Gonna Eat Worms

Feeling old... Defensive walking...

2012-03-06T19:58:00.003-08:00

Age is a funny thing it's relative, personal, and it's tied to time which is such an elastic concept that there seems to be no rhyme or reason. The passage of time is completely esoteric. You certainly can't pin it down.

Yesterday The Best Friend had a birthday. She was treated to the dubious pleasure of TLOML and I singing Happy Birthday onto her answering machine. The Best Friend was one of the youngest women in our class at school. In June I will turn 50 and TLOML hits her half century in November. Strangely,The Chef, who was featured recently in a newspaper article has managed to only be 47.... Hmmm very interesting, cause I am almost certain that she was actually older than me! LOL. Oh well, we know that there are some things that can halt the passage of time and most of them have to do with wealth and fame. I don't blame The Chef really; after all, 50 is a VERY BIG number!

Jazz, my blogging fibro sister, has written a great blog about feeling older than she is and rather than repeat all the things I wanted to say that she has already said I will just link to her here (I'm sure she won't mind). It's a great blog. So often I have ideas fermenting in my brain getting close to becoming a blog and Jazz will jump in just before I am ready to write it and steal all my thunder! Sometimes we seem to be eerily in sync.

My take on this feeling older actually needs to be credited to a conversation I had with The Best Friend a couple of months ago. She pointed out the way elderly people negotiate their way through a crowd. Many/most/perhaps all seniors move near other people with a visible hyper-vigilance. This isn't "defensive driving", it's "defensive walking". Keeping a very close eye on anyone else who is moving nearby and testing the ground before putting all weight on the leading foot has become a way of life for me. I get it, I really get how elderly people feel out in the world. I know what it's like to fear an accidental bump with a stranger - I know because it hurts! It hurts like (insert expletive of your choice) when I get jostled in a stupidmarket queue or when someone laughing unexpectedly steps back into me and it triggers a series of painful spasms that radiate from either the site of impact or from the part of me that moves unexpectedly to save myself. I now travel the world with the wary, skepticism of a bona fide Methuselah!

When I was a kid I never took a staircase at less than two steps at a time; almost every time I ran down steps I would jump down the last five or six. I touched a banister only to vault out of the stairs or down to the next flight. There were two speeds, flat out and stopped. Those days are gone. Now I traverse the globe with care, caution, and a desperate desire to anticipate the movements of any other things that move!

Last night I knocked over a glass of water. Startled myself which hurt my back. Dropped to my knees to wipe up the spillage which caused stabbing pains to explode from both knees. Reached under the bed with the bathmat and seriously popped some kind of tendon in my right shoulder. Then stood up and collapsed on the bed groaning in pain.... see what happens when I am surprised? Thank goodness TLOML was there to take over and clean up my mess. The knees and shoulder have yet to relent. So do I feel older than I am - damn straight I do. Do I move like someone older than I am - pretty much all the time (unless I forget or react and do something like I did with wiping up the spill last night). Do I have that suspicious hyper-vigilance about how other people are moving? Yep, I do.

So to all my geriatric followers (of whom I have none) I get it! I know you are careful and that the cranky look on your face is actually fear. I, like you, fear the unexpected. I don't need to bungee jump for thrills - walking through a crowd is about as much excitement as I can stand!

Roman blinds, a busy week and avoidant behaviour...

2012-03-01T17:41:00.000-08:00

I guess writing this blog is part of my avoidant behaviour... I'm hiding from the readings I should be doing for my university course... If it weren't for the last minute I would never get anything done!

We have had a really busy week! I needed some recovery time after the weekend spent at university and I took a little on Monday before swinging into action and cooking the 'Aromadorable Gunk' (thank you Carinthia!) in an enormous quantity. Tuesday was to be my introduction to TLOML's "extended, blended, family diner". So on Monday I cooked the sauce and that evening TLOML and I worked our way through my mum's "no fail Pavlova recipe" because TLOML's younger son turned 15 on Tuesday and he had requested a Pavlova for dessert instead of a cake!

The last time (the only time) I made a Pavlova was with mum coaching me through it in the kitchen of my duplex in St Paul Minnesota on the eve of my 44th birthday (2006). Anyone who reads my blog with any frequency will know how often I talk about my mum and what a huge part she plays in my life even now when she has been gone for three and a half years. So it was a lovely and bittersweet occasion to be making the Pav here in my new environment. I was more than a little sad that The Boy (my son) was not here to share the evening (and the Pav) too. I am missing him horribly.

The extended blended family is a very special group who are linked by shared children... it might best be described by an equation, which would necessitate an understanding of maths (which I do not possess) - but I will try...

TLOML and her ex (P) are the parents of the birthday boy (B)
P is now with D and she has two sons (T & F)
T & F's father, A, is now with M and they have two daughters (b & a)

This group generally gathers for "family dinner" to celebrate anyone's birthday or for other special events and on Tuesday night we hosted the entire clan (which now, including me, totals 11). We had a lovely night, the Aromadorable Gunk went over well and the Pavlova was gobbled up quickly. P and D hung out for a while later in the evening after A & M had to get the little girls home to bed. It was really good having a chance to get to know them better. I have some of social anxiety and P had been gently inclusive throughout the evening, especially noting that it was my first "family dinner" and I was grateful for his efforts though I still found the bigger group a bit overwhelming. The after dinner cuppa with P & D was more my style and I was much more relaxed. They both have really nice energy and it was great to let the anxiety go. It's a real credit to ALL of these people that they have such good relationships with their ex's and that the lives of the kids can include this bigger circle of love and support. If it takes a village to raise a child then this group is getting it right. On a personal note P said to me, (in front of TLOML) "I'm just glad you are making her happy" and I think it is the second time he has expressed that sentiment to me. It's wonderful to be with someone who has such a caring and civilized relationship with their ex.

Wednesday saw us gathering with the extended, blended family and a host of their other friends for the Syrian dinner which went really well. I did adjourn to the couch earlier than most but managed to handle the cushion on the floor while we ate. I lost much of yesterday to anti-histamine induced sleep following more itchy and scratchy and here I am today casually writing a blog!

I have been working up to a Roman blind repair project. I have investigated the mechanisms, purchased the cord, bought new split rings to replace the really cruddy ones that are on the blinds and made inquiries about getting a hot glue gun so that I can shorten them. This project is providing a nice distraction from the pile of readings I should be doing for my current course at Uni. Unfortunately I think the pulley mechanism at the end of the blind is dead so I might need to figure out how to replace that or jerry-rig up some kind of replacement. I will walk around this problem for a while longer before actually tackling it. There are (at least) three of them here that need repair. (An excellent avoidance technique.)

Almost every day, while she is at work, I send TLOML a text in which I tell her "I adore you" in a different language, today was Latin (Ego adorabunt te), though I have done languages from Afrikaans to Welsh. It's part of my job description as Officer in Charge of Adoration. TLOML finishes work early this afternoon... I think we should have lunch out and then maybe hit one of the waterfalls on the creek... Whatever we do will be fine though. We both seem to be pretty happy as long as we are reasonably close and not apart for too long. TLOML says she feels so safe with me that she can be a brat, she is too! But it just makes me smile. We are relaxed with each other in the way of couples who have been together for a long time. This has to be the lowest anxiety relationship I have ever been in! With no fights or arguments we have weathered an externally generated problem undamaged and perhaps even more closely bonded. Less than 4 months ago my life was very dark and I couldn't see much in the way of a positive future. My how things can change!

See? I have managed to absorb an hour and a half without picking up a text book!

Claude Raines has nothing on me!

2012-02-28T19:25:00.001-08:00

First I must admit that EVEN I am not old enough to remember Claude Raines performance in The Invisible Man... I guess I could be a bit more "trendy and current" by referring to the invisibility cloak in the Harry Potter books... either way you get my drift!

I am writing this blog for a brand new blog carnival that is specifically focused on Understanding Invisible Illness (UII to those on the inside!). This first call for blog submissions has asked for successful procedures or treatments that make life better. Unfortunately I haven't got a story that is exactly of that ilk but I certainly can wax lyrical, at length, about the influences in my life that have made my (mostly) invisible illness easier to bear.

First though I want to talk a little about what this invisible illness means to me. Way back when I first started Gonna Eat Worms I wrote a blog about invisible illness and in it I drew a parallel between having an invisible condition and being a gay or lesbian person who looks "straight". The interesting part of this is that I experience my life as a lesbian primarily as someone whose orientation is quite obvious and yet I experience life as a person with a chronic disabling condition as "able to pass". Any keen observer, or any person specifically interested in me would realize that I have limitations, they would probably notice that I am in pain even when I choose not to mention it; but the fact is that there are very few keen observers in this world and most people are far more interested in other things (like themselves) than they are in me. So by and large I can muddle along and remain in the disabled "closet" if that is where I want to be.

Concealing your real identity and hiding your condition, both come at a price. Never having served in India with the British Raj I have not fully perfected my "stiff upper lip" and hiding my pain and not utilizing aids (like my walking stick/cane) makes everything worse. It makes things hurt more and for longer, it makes my recovery time longer and more painful, and it sets up a plethora of future situations where people who don't know I have a problem will ask me to do things that I just can't do. In spite of this substantial weight of evidence I still want to hide sometimes and I can't loudly and proudly declare my condition. Yes, I can pass and yes, I sometimes choose that option. There are times when it is advantageous to conceal my weakness and because my condition is fundamentally invisible I have that choice!

So although I have no treatments or procedures that have helped me I do have a couple of HUGE positives that make my life a LOT easier. I have found doctors who believe me and who don't treat me like I am a malingering bludger... This is NOT the experience of all my Fibro Sisters. I have a partner (TLOML) who is always considerate of my situation, she checks in with me and gets my personal weather report regularly. She also runs interference for me with other people, at times "outing" me at a point when I would perhaps have remained closeted, but though in those cases I was pushed rather than jumping I really am glad because it makes life easier when people know and understand.

Tonight we are going to a February 29th party where people will be sitting on the floor to share a Syrian style banquet. TLOML has been onto it already warning our hosts that sitting on the floor is probably not workable for me and making sure that alternative seating will be available. I get a little embarrassed when people make a fuss but the longer term benefits of not exacerbating my problems far outweighs the few moments of awkwardness.

Invisibility; a curse and a blessing. It gives me freedom but also causes me to be the recipient of considerable disrespect at times. I guess the real problem, personally, is that it compromises my reality and taints my authenticity. I have been out and proud as a lesbian for nearly thirty years, I have supported my fellow travelers and defended the rights of all people to live their personal truths. So now I think it's time to summon Gloria Gaynor and blast "I am what I am, I don't want praise, I don't want pity!" Not just for me but for everyone who lives with disabilities and chronic illness, the more we all speak up, accept and declare ourselves, the sooner we will defeat the stigma of difference.

If I wasn't lying down I could sing "I'm still standing"!

2012-02-26T20:22:00.001-08:00

I have just participated in and pretty much successfully survived a three day university workshop. I'd like to say I blitzed this weekend but in truth I was severely challenged by the physical demands. Even now I am slightly exaggerating because the weekend comprised a three hour session on Friday night and then two seven hour sessions on Saturday and Sunday. Part of the difficulty for me was that with ferry, and car, trips each way a seven hour day becomes a ten hour day and all I can do when I get home is lie down and whine and thank Herbert that TLOML is here to make sure my collapse doesn't cause me to starve or rot.

The workshop was a real trial. It's expensive for one thing - catching the ferry and then paying to borrow a car on the mainland. It's draining and physically taxing. The chairs are not very comfortable and they don't face directly forward so I have to turn my head. Accessibility services offered me the use of a more fully adjustable chair but I didn't want to make a fuss so I refused. As I am doing all this again the weekend after next I might have to rethink that position... As regards the content of the course there were moments when I felt like I was reading/listening to a completely alien language, I seriously started to wonder if perhaps I had totally lost my ability to assimilate and understand new information. But somehow the understanding swam to the top and forced its way through the pond slime of my awareness. It seems I have not allowed my brain to vegetate completely. I can't speak so encouragingly about the body...

I'm quite concerned that I might not be able to manage all these workshops. I have three of the next five weekends committed to workshops if I proceed with the program in which I am currently enrolled. I'm tempted to convert one of the subjects to an external subject so that I don't have to attend. The trouble with this is that I actually learn very well in a classroom situation and it is by far the easiest and most successful way for me to grasp and fully comprehend the information...sigh...My intrapersonal conflict perpetuates! (see how clever I am becoming with my new studies!)

I need some help...

2012-02-21T16:48:00.000-08:00

I guess this post is about acceptance except in this case it is not acceptance of a physical or a health problem it is acceptance of an emotional problem. I wish I could have a counseling session with Deepak Chopra and learn to "Let it go!" or perhaps a consultation with Steven Covey so that I could more easily accept the shift of a problem from my circle of control to my circle of influence.

Please accept the following as undisputed facts. There is a situation in which I have been wronged by someone but I am forced (this is not under debate) to rely on an intermediary to deal with the situation. The intermediary is quite fair but is not without their own set of needs, wishes, and demands as regards this issue. They are an intermediary not an advocate. I think it would be reasonable to say that this intermediary is trying to finesse the situation so there is a minimal amount of damage done to any of the parties - but the damage has already been done to me.

I'm finding myself very frustrated, hurt and angry about some of the intermediary's choices, particularly by the fact that my issue and my agenda has been shelved, for the moment, while other issues are taking precedence. I can see that this is a reasonable course of action but that doesn't stop my feelings of frustration and abandonment coming to the fore. I know that my actions and reactions are causing damage. So I have reached a place where my intellectual self knows that I need to control the only things that are within my sphere of control... these are of course, myself and my own actions and reactions.

So how can I divorce myself from the emotional response I am having?

I am responding to the original transgression in which I was a collateral casualty - this arouses fear, feelings of helplessness and also hopelessness... it triggers memories of other situations in which I was forced to be the passive recipient of abuse, it is perhaps triggering stress responses that were implanted in me 40 years ago.

I am also responding to the fact that the intermediary is not acting as my advocate. They have, at times, advocated strongly on my behalf but they remain firmly in the role of intermediary and at the moment they are not focused on their advocacy of me, and I do intellectually understand, if not fully agree with, why it is being handled this way. However, this is triggering feelings of abandonment, galloping insecurity, fears for the future, and a terrifying sense of my alone-ness in this world. Again issues from my past- BIG issues.

So I'm hurting a lot and I have no means of changing the source of that hurt... I can't change my past... I can't change the events of this issue... I can't change the way this issue is being handled... I can ONLY change my response!

Listen everyone, I know this is something that could only be fully achieved through years of therapy but I can't afford to spend years or even months rolling around in this cesspool of semi-polished turds. I need the Reader's Digest version and I need it NOW!

I need to accept that this has happened and release it...
I need to accept that the intermediary knows best and is doing their best for everyone...
I need to accept that my feelings about abuse and fears of being abandoned are actually unreasonably exaggerated by events from my past...
I need to accept that the best chance I have for making a decent future for all parties in this action is for me to become more relaxed and easy-going about the outcome and the process...
I need to accept that my current responses are damaging and that not causing further damage is actually my highest priority...

So help me please... I don't know how to magically sweep my soul clean of all these twisted emotions... I'm hoping that writing about it will help, sometimes it does... I can't "get it off my chest" or anything like that to the other party but I can write as if it is for them to read.

Any ideas, thoughts and suggestions would be very gratefully received!

Should... Who says?

2012-02-20T20:27:00.000-08:00

On Friday evening I have to go to my first University workshop session. This is followed by full days on both Saturday and Sunday. I'm scared. Yesterday I had a really lousy day and my body was wracked with one intense breakthrough pain after another. It was bad enough that I broke my own rule and took Codeine in the middle of the day. I should have been doing some of the pre-reading for my course. I should be doing that right now. Yesterday I lay around in bed whining (to myself and the dog) and played Words With Friends with my close online friend who lives in England. We chatted and played and I whined to her a bit too.

When I picked up TLOML I confessed that I had not achieved anything useful during the day and told her that "I should have..." (fill in any of the myriad of jobs and tasks that are waiting for my attention.) She's so wonderful, she chastised me with the words "No shoulds!" We had a lovely evening... quiet and warm... easy. We watched some TV, had dinner, talked through some things we are each dealing with, it was really very close to perfect. At one point I had my arm around her shoulder and she was holding my hand and I realized that we were holding hands with both of our hands, my right draped over her shoulder in her right, and our left hands resting on my knee.

I don't recall ever being with someone before where we hold both hands. TLOML and I seem to naturally (and without either of us noticing it) assume the same kind of hand hold they used to teach us in primary school or all those progressive barn dances. It's surprising how often we find ourselves in one of these positions. We both like being close... at least most of the time.

Yesterday when I picked TLOML up from work she was in a grumpy and frustrated mood (yes she is human in spite of demonstrating the distinctly super-human skill of putting up with me). I reached for her hand and she withdrew and made grouchy comments about being too annoyed to hold hands... that's fine... we all become obstreperous from time to time. She vented for a while then we settled down to our nice peaceful evening. I was still in pain but fortunately not as much.

Today was better than yesterday but far from great. I spent some time helping TLOML's cousin, who is visually impaired, do an online grocery order and I've been slacking off a bit since then. Working on our shopping - making some government agency inquiries (that have been hanging over my head for a while). Generally just hanging around with the dog. I'm still itchy and still sore and I feel significantly discombobulated as to rationalize my lazy day.

Tick Tick Tick - Friday evening grows ever closer!

My itchy bitchy heart...

2012-02-16T17:50:00.000-08:00

I should begin with an apology - To anyone who goes on to spend some amount of time with Billy Ray occupying your brain... I sincerely apologize (kind of)!

TLOML and I have finally had a cross word, she simply failed to understand the way it works when I cook something. When I cook - anyone who is going to consume the output simply MUST contribute to the chorus of angles singing "Hallelujah"; they MUST prearrange a Standing Ovation! Then upon tasting the gold encrusted output they MUST collapse in paroxysms of rapturous delight! It is simply NOT acceptable to stay on the phone and suggest that this ambrosia can be reheated later. Needless to say I got snippy, one might even say pissy... or if one was not very favourably disposed towards me one might say shitty... I didn't yell or scream, I didn't do back-flips of uncouth gestures, I think I kind of hurumphed off with words that were vaguely aligned with the much maligned and totally attitudinous "Whatever".

Interestingly enough the day after this moody 'tudey outburst I began doing the prereading for my soon to begin Master of Conflict and Dispute Resolution (yes the irony is not lost on me). One of the first things I learned is that the ability to simultaneously comprehend and understand multiple diverse points of view is a sign of having a highly developed ability to manage conflict. In effect I can recognize that my expectations with regard to the award presentation that needs to take place every time I come within a foot of the stove are unreasonable, and perhaps even a little childish, while simultaneously feeling angry and disrespected that those expectations have not been met. I have learned that when I feel these conflicting feelings (or perhaps when my inner adult is not doing a good enough job of giving my inner child a time out) I am engaging in intrapersonal conflict. I actually do quite a lot of that I think!

Now here is not the place to sound off about anyone else's contribution to a dispute so I will simply say that there are some aspects of my personality that might be just a touch anal and that I am not always my best and most grown up self when other people are a bit more loosey goosey with plans and targets than I am. Interestingly I gave the appearance of being hard and TLOML found that off-putting. I'm not hard, I'm never hard... that audible clang which sounds so hard is actually my shell crashing closed over my wounded, wimpy innards. I am a good representative subject of my star sign - Cancer. Under threat (real or imagined) this super-sensitive little crab hunkers down inside her shell with her pincers raised in defense.

In view of the fact that TLOML and I have been going through quite a stressful, and very frustrating, external situation I really think we are doing pretty well. It hasn't been easy for either of us and we have both proved ourselves to be capable of empathizing with the other and gently trying to find solutions that minimize the damage to us as a couple. As in all things communication is the absolute key and I know that I really shouldn't get cranky about not getting my standing ovation when I haven't fully explained the imperative need of said standing ovation (and the chorus of angels and paroxysms of rapture). We have talked it out, and moved on, feeling more loving and stronger and hopefully a little more aware of our individual needs.

OK so much for the bitchy part... now to the itchy... eeep!!! I now don't know if the stings are real or imagined. This place is crawling with a staggering bio-diversity of stinging and biting things! Over the last few days I have been almost constantly scratching. My skin is on the move with real, and brain induced false, sensations of being stung or bitten. I spend so much time slapping myself that I should get a pair of lederhosen and take up German folk dancing. I also overdid it a few days ago when I replaced the decking boards on the landing and I've been paying with constant muscle pain and roving spasms. Oh well at least I achieved something, I could have had the same pain and spasm while doing nothing. I'd like to launch into a big whinge right now about how irritated I am re hurting all the time but I'd rather close by suggesting that all stove manufacturers consider installing a special feature - when you turn the dial to OFF, the stove should play a soundtrack of a crowd giving a rousing round of applause, cheering and yelling "BRAVO!!!"

Valentines, war and musings

2012-02-14T15:51:00.000-08:00

Yessterday

Today is Valentines Day and I must confess that I am not too big on celebrating the merchant's holidays, it's all a bit of a scam I think... (I know... "Bah humbug") I can't completely ignore it being that I am so very in love with TLOML.

The visit to the doctor yesterday went quite well except that he wants me off the sleeping pills that have been working so well for me over the last month... sigh... I had a restless night as a result... sigh... It was kind of hard as I had a rather painful afternoon and evening yesterday and had to take a pass on a stroll along the beach with TLOML, The Nurse, and the dogs. I just couldn't muster any more energy to overcome the persistent aches and pains.

Today

This is the 70th anniversary of the fall of Singapore. Effectively this is the 70th anniversary of the shift in allegiance for Australia from England to the United States. The Prime Minister at the time (John Curtin) clearly saw the desperate situation Australia was in if we were to rely on England to protect us; a scant two months earlier Curtin had joined Franklin Roosevelt in declaring war on Japan after the attack on Pearl Harbor - a controversial move as he acted for Australia independently of the British Commonwealth. Curtin knew that left to England we would have been quickly conquered by Japan.

The fall of Singapore is deeply personal for me - I almost feel like I was there. My mother was there and her stories and her passionate and personal telling of those stories are indelibly imprinted within me. This day 70 years ago she was jammed, with many other women and children, onto a tiny World War One mine sweeper and began a long and hazardous journey through the war torn South Pacific. Her husband (her first husband, not my father) was imprisoned in Changi. She was just 24 and never shed a tear until arriving at Sydney Central Station and receiving a bear hug from her father. What times her generation lived through! Born during World War One, she was nearly twelve when The Depression began and at twenty-two she watched her brothers, friends and suitors enlist to fight in World War Two. All the way from horses and carts to space shuttles.

Australia has an interesting relationship with the United States, it's a bit like being a younger sibling with a very impressive and quite bossy older sibling. You know you love them, you even admire them, they make you feel safer, but you slightly resent having to comply with their decisions. Since the American Civil War the United States has never gone to war or been involved in a foreign conflict without Australians by their sides. We have been complicit in both the travesties and the noble conflicts. This relationship was fully cemented by the fall of Singapore.

Enough history and politics. Today I am sore and a bit flat (in case you can't tell). I worked too hard yesterday and my body is furious at me. So I am going to veg out and try to recuperate. I really need to do some stuff about getting organized for University and I have no excuse because I can take care of it online, but I am still feeling lethargic and avoidant. Oh well, this too will pass.

Perceptions of ability within disability...

2012-02-12T16:41:00.000-08:00

Today I am going to see a new GP. Anyone who has read this blog from the beginning (I really don't think you exist) will remember my trepidation and then my joy at my first visit to Dr McLovely, whom I am missing quite a lot! I have been here nearly a month and I MUST get some prescription renewals. I'm dreading it. I have to take my copy of 'War and Peace' (my medical file from Dr McLovely).

I now live in a VERY small community, TLOML works at the local medical center part-time, The Nurse is there full-time, I socialize with some of the doctors and most of the nurses and admin staff... Of course The Nurse and TLOML see me enough to see both my good days and my bad. They know that when I go out to a social function I am sucking it up and soldiering on; they know that I often have to pay the next day for the efforts of the previous day; they know that the times of activity only happen because of the 18 - 20 hours I spend per day in bed. Others don't.

On Saturday TLOML and I went on the ferry to the bigger city on the mainland. Foolishly I had overdone it quite badly on Thursday and Friday and I was (and still am) in the high range with both my constant pain and my breakthrough pain. In anticipation I took my cane. I think it is the first time I have used the cane on the island. Here the stupidmarkets are tiny, the parking for everything is close, TLOML is almost always there to help me balance, and basically I have been able to get by without it. Naturally we knew people on the ferry, (TLOML knows almost everyone everywhere)and though I caught a quick glance at the said walking stick in my left hand nothing was said. Once in the city I used it to walk off the ferry to the car, then didn't pull it out again until we were at the SUPER mall. I have to be really honest here, there just aren't all that many things I miss about the US; I miss drive through banking; I miss the low cost of things there; ummmm... I miss the Interstates... But there is one thing that I miss above all, one thing that stands out from the others like a hippy at a GOP convention... I miss with passion the courtesy motorized carts that were available even at my local stupidmarket.

Using one of the courtesy scooters was a VERY hard thing to do the first time. I remember gazing enviously at those carts for a long time before a day came when I was just SO SORE and Sam's Club was SO BIG that I simply could no longer resist. I was never a constant user, it always depended on my pain and fatigue levels, the potential length and complexity of the shopping experience, and if I was alone or if I had someone who could manage for me if I needed to get off my feet. Saturday I longed for one of those courtesy scooters. At first I was leaning on the trolley but then we bought the rather heavy punching bag (a birthday gift to TLOML's sweetheart younger son) and the trolley became too heavy, so I went back to the cane and handed the trolley over to TLOML. I couldn't take waiting in the queue at Target so I waited on the kangaroo on the kiddie coin-op carousel. I really wish Australia would catch up with the US as regards things like courtesy scooters, I would have been so relieved to have had one then and there!

So here I am going to yet another doctor, I'm worried that the invisibility of my condition might work against me, the usual worry. It's an old problem and one that all of us with invisible conditions experience. In Sydney when I went to the doctor I always used my cane. It was necessary to walk alone from the parking which was quite distant but it was also a concrete and tangible symbol of the disability that is otherwise invisible. I was also suffering a LOT of vertigo at that time and had the balance of a two-legged stool! Now the vertigo has eased off somewhat and the parking is right outside the door, but I do need this doctor to understand.

It seems a lot to ask of a stranger, that they can understand something that I really don't understand myself. I don't know why I can do almost anything for a short period of time, I don't know why I can carry a punching bag off the ferry and then have to go home and lie down to recover, I don't know why sometimes I can't make myself stand up straight when I get up out of bed, I don't know why sometimes I fall over for no real reason when I am trying so hard not to fall, I don't know why the urge to be horizontal is like an addiction or a craving, I just don't know... Most days I can suck it up for a couple of hours and go out to a social event and only the most observant of people would ever know I was in pain - some days that would be impossible.

So do I walk in to the doctors office with my walking stick in hand and say hello to the receptionist who I last saw when we shared a bottle of bubbles at a fabulous pool party?

The things I can write..

2012-02-06T20:16:00.000-08:00

Well, here's the story - I'd like to write but I can't really talk about the thing that is dominating my thoughts at the moment. Perhaps I can best use this forum to talk about the things that are going well.

TLOML and I are wonderful together. Even though we have been going through some really very difficult stuff we have supported each other pretty much seamlessly. I could not have imagined that we would work together so well, so caringly (I know that isn't a word), when going through a crisis situation. Our precious new relationship has faced an external assault and has proved resilient and solid. I am astounded by her grace under pressure and by the sensitive awareness she manages to maintain even in the heat of the moment.
I have been doing reasonably well, health wise lately. A few days of quite bad pain here and there, some weird things (like the whack-a-mole phenomena mentioned in my last blog), and a general weakness, but mostly I would say that life in the tropics is working well for me. This is particularly good in view of the stress of the last few days. I know that I can have an almost immediate physical reaction to stress and fortunately it hasn't been too bad this time. (Not long before leaving Sydney I was in a stressful situation and even while it was still happening I began to experience very acute pain in multiple areas.)
The day before yesterday (Sunday), as part of a deliberate plan to try and relax a bit, TLOML and I went for a swim in one of the pools formed in a creek. There has been a lot of rain lately and as a result all the creeks and waterfalls are flowing. We slowly and carefully trekked a couple of hundred yards to an oasis of beauty. On the way in, someone leaving pointed out a koala sitting quite low in a tree. I have not seen a koala in the wild since I was a small child. This young fellow was hanging out in the fork of the tree watching us. It was very exciting. We arrived at the pool at about the same time as a young family that was climbing up the creek bed but they didn't stay long and soon we had this natural haven blessedly to ourselves. At one point I lay back and floated, totally relaxed (for the first time in ages!), I looked up though the gum trees to a spectacular blue sky with puffy white clouds. If it sounds idyllic it is only because it is. About the time we were ready to leave another group arrived.... they could not have been more different from us, they had cigarettes, beers in hand, a bull dog, a boom box, and were yelling to each other. It takes all kinds...
Today in about an hour I will pick up TLOML from work and we are going to take the dog and explore another creek that runs into one of the bays here. Being a weekday, and getting a fairly early start, I'm hoping we will be alone. TLOML never hurries me or becomes irritated with me when I am slow or unsteady; she's always ready to give me a hand or a shoulder to hang onto. About the dog - TLOML has a wonderful dog and we've become pretty close, she hangs out with me all day and then she and I share the highlight of both of our days when we go together to pick up TLOML from work. Four bright loving eyes are waiting in the car for her which must feel pretty good!
I feel so very fortunate to be here, to be Australian, to live in a country with boundless natural beauty, and abundance. We did an online shopping order and bought a "Fruit Box" which is a selection of the fruit that is good at the moment. It was a bit of a mistake and we ended up with all kinds of things we would not normally order (green apples, strawberries, cherries, red grapes etc) but it has been lovely eating my way through all the stone fruit - peaches, nectarines, apricots and plums and I even feel like I am performing a service by eating them before they go off! The fridge is full of wonderful food, there is beauty at every turn, and I feel loved; how much better does it get than that?

I am missing The Boy, though we talk often on the phone and occasionally on skype, and I'm missing The Best Friend whose warmth and good humour saw me through all those strange and dark days. I talked to her on the phone yesterday for quite a long time and it soothed me. She is taking care of my boy and nurturing him for me.

TLOML has an amazing best friend too and I really need to mention her here... I think I will call her The Nurse. Throughout this stressful situation The Nurse has been an unfailing voice of reason and sense, she has provided direct guidance and constant support, not only of TLOML but also of me. I can barely scratch the surface in expressing my gratitude and appreciation to her for her validation and insight. She has welcomed me unequivocally and I value her in a multitude of ways.

So there you have it... we are taking the rough with the smooth; we are holding together and being kind to each other. So, for someone who couldn't talk about the big issues, I seem to have managed to have plenty to say!

Rump pain and pain rump (Unsafe for vegetarians)

2012-02-01T22:06:00.000-08:00

The other day TLOML and I walked into the bigger of the two tiny stupidmarkets on the island and I noticed an incredible deal in the meat department... Whole rump was for sale for only $5 a kilogram (this equates to roughly $2.27 per pound for my imperialist readers). We are both pretty determined bargain hunters and we both believe in stocking up when things are on sale. I went through all the vacuum sealed rumps and chose what looked to be the nicest one, fortunately, or unfortunately depending on your perspective, it was also one of the largest weighing in at well over 8 kg (roughly 18 lbs).

When I last lived in Australia back in the 1990's I lived in an area on the NSW Mid North Coast that, aside from being spectacularly beautiful, had a thriving beef industry. Our town of 10,000 people had no less than 8 butcher shops in the early 90's. Back in those days, when I was settled in a long term relationship with the woman who is The Boy's other parent, we often bought things like whole rump or a side of lamb. We would carry it home and I would spend however long it took to slice and freeze the spoils of our shopping trip.

I actually come from a long line of butchers. My dad was a doctor (pun intended) and his mother was the daughter, granddaughter, great-granddaughter, and great-great-granddaughter of butchers. I am seriously not kidding. My first Australian ancestor was a convict who arrived at the colony in 1792 and almost immediately established a butcher business where he employed/was allocated other convicts as labourers. That butcher shop was in George St Sydney opposite the Town Hall. While I understand that some may find this abhorrent I have actually always quite enjoyed handling meat

Now I know that others may want to hit me upside the head with a brick for being so thick, but yet again... yes I know this is a recurrent problem... I failed to realize that I am not in fact the same healthy, fit person I was fifteen years ago.

First I spent about two days looking at this massive package that was dominating one shelf in the fridge. Then I began a familiarization process with TLOML's set of knives that were sharp like sledgehammers. I'm not sure if I have mentioned it here lately but ever since the night of the Shabbat dinner (where I spent a while washing dishes) I have had a lingering case of 'Wimpy Arms Syndrome'(WAS). I'm not actually as weak as I feel, I can do stuff with my arms but afterwards I always feel like my arms are in an anaerobic state - sometimes for days. In a knife attack of a different kind I attacked the knives with the steel. That wore me out and exacerbated the 'WAS'.

Finally on Monday I copped a total rush and after dropping TLOML off to work I set about butchering the rump. Wow what a mammoth undertaking! This was clearly made more mammoth by my fixation on trimming ALL the fat from anything other than steaks. I would cut off the fatty bits and then cut the meat left on the fatty bits off them for the dog... I don't want to clog her arteries any more than I want to clog my own! I got half way through and had to have a rest for a while. Not only was the 'WAS' playing up but standing was making the rest of my body rebel and the rump was becoming quite a pain in the butt!

I resumed after a couple of hours horizontal. I ended up with;

two huge steaks
five normal sized steaks
six thin BBQ or sandwich steaks
one about 1.5kg chunk for roasting
roughly three kg of trimmed sliced stir fry meat (completely fat free)

I froze all of it except half the stir fry meat that I cooked up into my mother's famous steak diane for dinner. I don't know what has come over me. Here I am cooking twice in a week when in 2010 I probably only cooked twice in the whole year! I am developing a terror that TLOML now has these outrageous expectations of my performance as a "Domestic Goddess". Over and over I am telling her that I really can't cook and I only have three dishes (yes there is one still to come)... She doesn't believe me. I hate cooking. Oy Vey!

So just in case my cooking is exciting any interest in you, my long suffering reader, I will tell you how I made the steak diane.

Start with a nice quality cut of meat in my case rump (duh)... I have tried with blade which wasn't nearly as nice. Slice it very thinly and cut into pieces about 1.5 inches by 1 inch (it doesn't really matter as long as it is cut VERY thinly). Trim all fat and gristle from the meat. The closer to completely lean the better. The next thing I did was marinate the steak in a mixture of 3 parts red wine to 1 part Worcestershire Sauce, about a quarter of a cup of minced garlic (maybe a heaped tablespoon), and a VERY generous sprinkle of black pepper (I also threw in about fifteen whole black peppercorns). Just to give you some idea of proportions this was marinating in a tupperware container about 9 inches by 6 and was about 3 inches deep. I tossed that in the fridge and had another lie down that was urgently needed. The next thing I did was put the whole mix into a large saucepan on medium heat. I brought it to the boil stirring regularly and then turned it down and allowed it to simmer for a long time... maybe an hour? Well until it was reduced to about an inch less moisture in the pan than there was to begin. Then I poured in 600ml of thickened cream (just when you were thinking this might actually be good for you LOL), stirred constantly until it returned to a slow simmer. Then you just let it keep cooking with regular stirring until the meat is in a medium runny sauce... somewhere between a thin goulash and a thick soup. As you can tell by these instructions I have no idea about cooking descriptions, quantities, temps, or timing. To top it off I almost never taste what I am cooking and I cook by smell. If it looks and smells alright then it will taste ok too. It should be very strongly flavoured with the garlic and the pepper well represented. I made enough to feed the two of us for two nights.

OK TLOML was in the throes of ecstasy over the steak diane (I'm sure more than half the ecstasy comes from her not having to think about dinner for two nights in a row). So I have gone and given the wrong impression completely! She seems to think I'm pretty terrific and I hate the idea of the fall I am going to suffer when she sees how hopeless I really am. Now you know why I haven't been blogging as much lately... it's hard work being terrific!

Who has the voodoo doll of me?

2012-01-31T19:54:00.000-08:00

Ok time to fess up... I am not perfect... in fact I have made a few enemies in my time (I'm not really sure how but that is another story).

Last night I had an experience that clearly confirmed that someone, one of my American exes I suspect, has acquired a voodoo doll in my image.

Sitting on the couch with TLOML (who is wonderful/incredible/fabulous/and even better than I imagined etc) watching the teev suddenly my left butt/hip starts to hurt with a deep ache... a moment later my right ankle develops a stabbing pain for no reason, I hadn't even moved it! The ankle hurts enough to take my mind off my butt (oooh that was a weird image), but not for long because a moment or two later it's my right shoulder, then there is something stinging me at the back of my right knee, oh hang on -- nothing really there... no actual sting. Then it's my right side of my butt with a deep throbbing ache. If it didn't hurt it would have been amusing.

I started to describe this to TLOML (who is terrific/adorable/fabulous/and actually cares about my aches and pains etc) and while we are talking these blocks of pain continue to move around my body. Mostly they were aches but, just so I don't get too bored, there were a few sharp stinging pains and some weird skin sensations... wandering imaginary insects, huge patches of burning skin etc.

Now any of my pals out there who are unfortunate enough to share this bloody rotten condition with me may have experienced feelings like this... Actually wandering random pains are not all that unusual. What was really odd last night was the speed of the changes. I could hardly keep up with what was hurting most while trying to describe it to TLOML (who is gorgeous/amazing/fabulous and genuinely seems to be in love with me too for some insane reason etc). I was announcing a new location about every ten seconds.

As a rational and well grounded, sensible woman, I can, of course, only come to one conclusion; someone is playing roughly with a voodoo doll - an effigy of me. I don't think they were doing the stereotypical sticking in of pins, mostly I think they were squeezing or pinching parts of me with an occasional little pin prick. Perhaps they have acquired one like these ones pictured below (available at Voodoo Authentica)

All I can say is that I hope they misplace my effigy as soon as possible because I felt like I was playing some strange twisted version of "Whack-A-Mole" that would have been more appropriately called "Rub-A-Sore Spot"... I couldn't keep up and failed miserably.

Fortunately this episode petered out eventually and I was able to enjoy Tablet Time with TLOML (who is excellent/awesome/fabulous and who I love more every day etc). Courtesy of Dr McLovely I have been getting some sleep which IS interrupted by pain but IS NOT interrupted by the jumbo jet that is landing in the bedroom every ten minutes or so (aka the air conditioner). I have even been dreaming a LOT lately. If lack of sleep is really the culprit in the FMS mystery I should be feeling better... I'm sad to report that "better" is not the Word of the Year so far for me. "Happier" has taken what appears to be an unbeatable lead in the Word of the Year stakes! That might be courtesy of TLOML (who is enchanting/amusing/fabulous and who has plastered a huge smile on my dial etc).

Herbert, would you please make the villain stop playing with the doll?

Domestic Goddess....um...well...um...?

2012-01-24T18:07:00.000-08:00

Ok here it is in black and white, the truth, the whole truth, and nothing but the truth... (As best as I can relate it through the twisted lens of my perceptions.)

I've never been much good at cooking nor any of the other domestic arts.

I can get by, but only just. My idea of cooking is to get take-out or to go to a restaurant. My idea of cleaning is to not make a mess. I am pretty good at staying on top of the washing, at least that way I get to play with water, and I do like to wear clean clothes. Ironing is one of those things I can do but I avoid. Suffice it to say that I have spent my adult life taking a minimalistic approach to domesticity.

In my defense I will say that I am handy. Fixing things is generally fun, a bit of a puzzle and then a tremendously satisfying outcome that pours positive strokes into my instant gratification pleasure centre. A couple of days ago I fixed TLOML's sliding screen door. It took $12 and about five minutes (including diagnosis and then installation of the new rollers). I have been living large on the praise I got for that! Apparently it had been a giant pain in the arse for about five years. I'm working on procuring some decking board and I will be doing a little verandah repair in the next few days too... that ought to put a shine on my halo!

Anyway, yesterday, because TLOML had not had enough sleep, had gone to work and stayed late for a meeting, and was heading out in the evening for an exercise class, I decided to demonstrate my rusty dusty domestic skills and save TLOML a few worries. So after dropping TLOML off to work in the morning I went to the smaller of the two tiny supermarkets we have here on the island. (Note the use of the word "we" clearly I am beginning to identify as a resident!) I bought, pasta, broccoli, mushrooms, onions, zucchini, beautiful tomatoes with the vine still attached, and cheese. Then I headed home and stripped the bed and put on a load of washing (this involved a couple of trips up and down the quite long flight of stairs to ground level where the laundry and the clothes line are located).

Then I took another run down the street to the liquor store (the bottle shop) to get some cheap red wine for cooking. Finally it was time to start the masterpiece. If I may digress for a moment and correct a few misapprehensions... although I choose not to cook and I'm not very good at the timing and coordination of meal preparation (having had so little practice) I actually can cook. I'm reasonably creative (one day you should ask The Boy about the White Gumbo) and not bad at combining flavours (though the White Gumbo might belie that point).

It began with the rinds and the fat of 5 rashers of bacon cooked to a crisp and then removed, this leaves a small amount of bacon dripping which is far and away the most indulgently delicious fat for any cooking project! Then I sliced three big brown onions and tossed them in with two heaped teaspoons of garlic, one of ginger, and one level teaspoon of chilli. I had to drop in some butter as there wasn't enough bacon fat. Then I sliced and added about ten medium sized mushrooms. In went seven vine ripened tomatoes - sliced, the rest of the bacon thinly sliced, and about a cup of tomato paste and two cups of cheap red wine. Simmer and stir regularly. Meanwhile back at the ranch the washing came in from the line, unfortunately it needed my help and refused to spontaneously fold and stack itself. Then I sliced the zucchini and tossed it in, cut up the broccoli (even the stalk) and added it too. Another slosh of wine and turn it down to simmer and reduce. This concoction can be made with any veggies you happen to have on hand, any meat or it can be vegetarian, the only really standard requirements are the onions, tomatoes, and the wine. The rest is completely flexible. You can serve it on pasta or rice, or over meat or even on toast. TLOML and her son were both suitably impressed (I did warn them that they will need to wait for the next blue moon to see this or anything else cooked by me).

The only problem with my stint as a Domestic Goddess is that I overdid it a bit and I have been paying since about 4pm yesterday afternoon. Roving muscle spasms and some fairly cruel baseline pain have sidelined me today. I have even broken my rule about taking drugs that make me drowsy during the day. I caved in and took a valium a little while ago. I'm hoping that it will help with the spasms but so far not so good unfortunately. So yesterday's Goddess is today's giant slug lying down. I still think it was worth it!

All the while I was cooking I was trying to think of a suitable name for my creation. Heretofore it has always been just called "gunk" but I think it is deserving of a more elegant and sophisticated title. I considered calling it "Henry VIII Sauce" as I beheaded the zucchini... I would love to hear some suggestions?

Tropical thunderstorms and whacky weather...

2012-01-23T18:37:00.000-08:00

Last night there was the most amazing storm! Thunder, lightning and torrential rain. We were all awakened and the poor dog quivered and shuddered between TLOML and me.

My darling lost more sleep from an already shortened night. I did too, but I have such low expectations regarding sleep that if it wasn't the storm waking me it would be an aching shoulder or a stabbing pain in the hip. This was much more exciting and more fun. I actually like storms. If I had my druthers I would probably have been outside on the verandah watching nature's fireworks, but the dogger was scared and the g/f really needed to get as much sleep as possible.

The weather is different in Australia than it was in the US. There seem to be so many more drastic weather events in North America.

I lived in Minnesota and the whole idea of a place where you are sweltering in summer (temps over 100F sometimes and quite humid (probably from all those 10,000 lakes)) and then dealing with temps well into the negatives in winter is beyond imagination in Oz. The freezing rain, snow, and the days when it is too damn cold to snow, make winter a real endurance sport in MN. I strongly suspect that it is unfit for human habitation but that those Scanderhoovians are too damn stubborn to admit it.

Then my stint in Oklahoma was interesting. In that wonderful English film "Shirley Valentine' Shirley talked to her wall, "hello wall"... in Oklahoma it is "hello wall cloud". I know where Frank Baum got some of his inspiration for The Wizard of Oz. There are few things more alarming than to see the sky turn green with banks of clouds that appear impenetrable! If I had experienced the storm we saw last night while in Oklahoma there would have been tornadoes for sure! It was a definite "super cell" and yet for some reason it is very rare for these huge storms here in Australia to create funnels. Another thing about a storm like that in Oklahoma there would have definitely been downed trees and power lines and thousands of people without power etc etc.

Northern California is really beautiful and as I managed to avoid any earthquakes I have no complaints... but... it is kind of interesting in some weather ways... Mid summer The Boy and I were dying in the 104 degree heat in Willits when only 30 odd miles away, as the crow flies, at Fort Bragg where we went to have a swim, everyone was wearing jackets! On top of that when we did try to go in for a swim the water was SO COLD that I, literally, lost all feeling in my lower legs. Then on another day driving from Cloverdale on Hwy 101, where we were being broiled alive (sans butter and garlic), to San Francisco we crossed the Golden Gate Bridge to find wisps of fog against the hills of SFO. There is of course that wonderful quote, often erroneously attributed to Mark Twain, "The coldest winter I ever spent was a summer in San Francisco." We certainly experiences the truth of the saying no matter who actually said it first!

Then I did some time in Houston, Texas. Here the fixation on those incredibly destructive hurricanes that spin through the Gulf of Mexico and then tear up some unfortunate area of shoreline is really quite justified. A trip through Galveston, about 45 minutes from Houston, still reveals the destruction of the 2008 hurricane "Ike" which at one point was over 600 miles in diameter and caused damage from the Florida Panhandle to Corpus Christie.

Now Australia isn't completely devoid of weather we do get cyclones (hurricanes by another name) and they have been known to damage this beautiful island on which I live. TLOML's shade cloth over the pool is still sporting some substantial rips from the most recent cyclone. There have been some very nasty cyclones in the past but most of them affect areas of quite low population. Cyclone Tracy that decimated Darwin on Christmas Day in 1974 was especially significant as it did wreak havoc on a major city.

I have no idea why storms like last night don't drop twisters. It might have something to do with the ocean. Maybe if Australia had more population in the middle there might be more reports of tornado like phenomena. We Aussies cling to the coast like born-again lemmings refusing to either jump or move inland.

It seems to me that when I was a child in Sydney you could pretty much set your watch by the "southerly buster" that would roll in to cool us all down around 3.00pm. Sydney has been doing a fine impersonation of San Francisco this summer quite cold and damp. It is really giving all those anti-global warming wowsers good ammunition for their argument.

It's just all different. Nothing is the same as it was and no two places are alike. The only constant is change. Thank goodness I subscribe to the "Variety is the spice of life" philosophy!

Paradise and love can only go so far...

2012-01-21T22:17:00.000-08:00

The last few days have been a bit of a trial for me. I appear to have contracted some generic flu/cold bug of some sort that started as a sinus issue with increases in pain and fatigue. Now it has moved to my upper respiratory tract giving me a gravelly voice and a phlegmy cough. The problem with this is that so many of the symptoms are actually just an increase of those that already contribute to my average day.

There have been times when I have used the analogy of how one feels when one has the flu to describe the nature of the constant low level pain and fatigue that are just part of the baseline for me. When an ordinary (read "healthy") person comes down with a bug they feel sore and tired. They like to rest more and lie down more but they can force themselves to do a strenuous activity if they really must. Welcome to my normal.

So here I am, happier than I have ever been in my life, enjoying paradise with fabulous food, wonderful company, and virtually no stress and feeling really quite crappy. Yesterday was the worst day for the flu'ish feeling. Today just feels like a quite unpleasant flare with the added pleasure of a very sore throat.

There are a lot of bugs in the tropics, ones with multiple legs, not just bacteria and viruses! I know that seems rather obvious but when you have weird skin sensations where you feel like you are being bitten or stung for no good reason, or when you feel things walking on your skin that really aren't there, the added factor of the presence of "actual" bugs makes for a weird mindset. I'm slapping myself too often, getting sudden stabbing pains in a tiny spot and then searching for something that caused it. People could be forgiven for thinking my condition was psychological instead of physiological or neurological (the verdict is still out on that one re Fibromyalgia though the current theory is blaming the central nervous system) when they see me scrounging around looking for imaginary ants, spiders and beetles.

Sooooo... I just took some pain killers and I'm getting my poop in a group for another social engagement this evening. I have been out more since I arrived here last Tuesday than I was in four months in Sydney! It seems that a highly social two thousand can outdo an insular five million hands down. Of course TLOML is very social and involved in all kinds of things and in Sydney I was verging on reclusive. The good thing is that most things are very close to home here. TLOML and I haven't really got the "I need to go home now" signal down yet. I don't like a big fuss and would like to be able to just slip quietly away if I'm getting too tired or sore to party on. We are working on it. Certainly this evening I might come home quite early (unless a couple of glasses of wine does what pain killers can't do) and I have no problem with TLOML staying on especially as we will only be a couple of blocks from home!

I have had a remarkably good run. I managed to avoid colds and flu for well over a year including time spent on two different continents! So I'm going to try and suck it up and have a good evening in spite of having a nasty dose of crud!

Sweating it out

2012-01-19T18:15:00.000-08:00

Phew - I know all my friends up in the Northern Hemisphere are suffering through their winter and I know I have been gloating somewhat about their negative temps. I believe I have earned the right to gloat by spending 7 years in Minnesota and particularly by going skiing one day in jeans and long johns when the temp was minus 10 Fahrenheit (about -23 Celsius). Karma being what it is I suspect my gloating is coming back to haunt me.

It's warm today, really quite warm, one might go so far as to say it is too warm... you might even say hot. Right now it is a very humid 86 F with a "feels like" rating of 95 F... I'm most definitely "all of a glow" and the languid rotation of the ceiling fan is providing scant relief. It's more than partially my fault that I am now glowing (I guess rivulets might count as more than glowing?).

One of the things I failed to mention in my account of the road trip was that the front right turn light assembly (take note of my new and improved lingo acquired while searching online!) fell off the car somewhere on the first day. It appears that the previous owner had failed to clip it back in properly after a minor front end repair. Now Shermie (short for Sherman Tank), my car, is a Volvo, an older model but not showing her age too badly, so parts are quite an expensive proposition. I went downstairs to check exactly what the part looked like and warmed up considerably. The genuine part is just over $300. There is an auto wrecker who "might" be able to get me one for $80, and online - in the US of A I could buy one for $25. It's hard to believe that something performing the same function could range so vastly in price. The dude at Volvo needed the Vin number to be able to search, so with him still holding on the phone I went downstairs again to get the Vin. The second trip down and then up the stairs really kicked in the glow glands!

So I'm off for a tepid shower. Mum always said that to cool down the shower must be tepid because either a hot one or a cold one stimulates blood flow and heats you up. TLOML will be finishing work shortly and I'm looking forward to spending some time with her this afternoon. It's an adjustment, TLOML going back to work, but I think it will be fine. I will have more time to blog, more time to read, and now that I have finally worked out the enrollment system at the University (is that a secret test to see if we are smart enough to go to University?) I will soon be starting school.

I'll be interested to see if the FMS gets better or worse in the heat so far it seems to be much of a muchness but I am dutifully keeping my pain diary (if catching up the last two weeks could be called dutiful...) so if there are any significant changes it should be evident. I do know, for me, that being cold makes everything hurt more. I get more muscle spasms and more joint pain specifically. I'm wondering if the heat might have a bad effect on my fatigue levels... Oh well I'll know soon enough. Any thoughts?

Constant amazement and the super road trip

2012-01-18T17:35:00.000-08:00

TLOML and I just sat down to watch some TV this evening and by complete happenstance stumbled across an interview with The Chef, with whom we went to school. I was in school with her from years 9 - 12 and TLOML was with her from Kindergarten to 8 and then 11 to 12 (the final two years of school saw us all at the same school). We, the two Displaceds, were stunned to see The Chef on TV as neither of us had ever seen her on TV before but more to the point we wondered what she would think if she could see the two of us, laying back on the couch in our underwear, holding hands, and watching TV. I think it would be a reasonably safe bet that we are the only two women named Displaced that The Chef has ever met. I wrote about The Chef once before in a blog I called "Thoughts on vulnerability". I don't suppose any of this is all that interesting aside from the fact that I am so constantly (literally) amazed by the turn my life has taken. Suddenly I have been transformed from someone on a long run of misfortune to The Luckiest Woman In The World!

The week in Sydney was very hectic, TLOML and I had to debate a little and juggle the competing priorities of each of our friends and families. On top of those moments of friction (that were all handled amicably and with ease) my body was freaking out a bit and was giving me a few very painful days. Last Friday, the 13th LOL, I had my last appointment with Dr McLovely and aside from filling up with petrol she was our last stop in Sydney. TLOML and I began our journey north. She had said so many times "I hate long car rides!", "I need to stop AT LEAST every two hours". I just shook my head because I not only LOVE long road trips but I am very goal focused so I push on and delay stops as long as possible. She had told me that she liked to relax in the morning and then head off after a leisurely layabout morning... I had told her that I need to get the work of driving done before I will relax and do anything "leisurely". It all looked quite foreboding! We had five days to travel 2400km. It seemed almost a certainty that this journey would be the cause of our first fight.

The first night was spent with my brother and his partner and that took us only about 450km out of Sydney. The plan was to try to get up the coast in the morning so that we would have time for a swim in the surf before going to my brother's. There are few places in the world with beaches more beautiful than the Mid North Coast of NSW. Seemingly endless tracts of white sand and the glorious South Pacific sending in wave after wave makes it a very appealing place to anyone who enjoys body-surfing. Everything went pretty much according to plan with one rest room stop en route and plenty of snacks that were cleverly packed by TLOML. By mid afternoon we were swimming alone on a beautiful beach. TLOML is particularly keen to swim where there are waves because her tropical island home is inside the Great Barrier Reef and is therefore inadequate in the wave department. I love the surf and always have but I can't really trust myself any more. I used to be a very strong swimmer but I have to dial it way back now and make sure that I pace myself. The last thing I need is a big exercise induced flare while I am trying to drive up the coast! The night with my brother was great. We had a delicious dinner with super tender steak and vegetables. Time slipped away far too quickly.

I woke early in the morning and found a few extra corners of space in Shermie (my car) to jam in some of my old tools that my brother's partner had been minding for me (for 12 years LOL). I will be needing them if I am going to make myself useful around the place here. We headed off in fairly good time. The second night was also planned. We needed to travel about another 450km to The Gold Coast where we were staying with TLOML's step-mother for the evening. TLOML was pretty keen to get another swim and we were shooting for a stop at Byron Bay. Unbeknownst to either of us Byron has been bypassed by the highway and I completely missed the turn off. It was such an unobtrusive sign! I was sure there would be another exit but after about 10 minutes still heading north it became apparent that there wasn't one! Oh well Brunswick Heads would have to do. TLOML pouted a little about missing Byron but we were in agreement that going back was too much of an inconvenience so she picked up the lip and we made for the gorgeous surf beach at Brunswick. We had a lovely swim, the waves were a little too choppy for body surfing but it was still refreshing and invigorating. We arrived in Surfer's Paradise with time to spare. We had a terrific evening with TLOML's step-mum, including beautiful accommodation on the 37th floor AND dinner at a seafood buffet where I managed to consume about 100 oysters. (I know I sound like a terrible piggy but there was a challenge involved!!!)

The third day we were planning to have an early swim in the surf and be on the road by 10am. TLOML was having such a nice time with her step-mum that we decided to skip the swim and leave a bit later. Still not a single cross word between us! Step-mum (who is lovely!!!) made us the most beautiful gourmet sandwiches for the road - smoked salmon, ricotta cheese, multi-grain bread, avocado - absolutely scrumptious! We had vaguely planned to head to the most northern surf beach in Queensland but unfortunately on this day we hit quite a lot of rain. I was not making great time but skipping the swim allowed us to reach Rockhampton for the night. This night was spent in a strange motel. My Minnesotan friends would call it "different". For a start the woman at the desk seemed so incredibly depressed that she looked like something from 'Night of the Living Dead'. The entire outside of the motel was tiled in big pseudo travertine tiles. When we managed to get inside the room we found that everything but the ceiling was tiled too!!! There was a single bedside table with the name of the motel written on the top AND on the drawers in permanent marker, the jug and the bar fridge were similarly labeled. Still the sheets were clean, TV worked and we were together!

Day four was trying because of some quite heavy rain and the almost complete lack of overtaking lanes on the two lane "highway". The day before had featured occasional signs saying "overtaking lane in 5 km" presumably to prevent us taking big risks overtaking but on day four no such signs appeared. I guess one saying "overtaking lane in 347 km" might not have been as effective. We actually could have made our destination on day four with just a little more endurance but we decided to stop about an hour south. We stayed in a nice motel and ordered food from the restaurant, none of the furniture or appliances were labeled with the motel's name so this motel appeared to have a higher standard of clientele.

Right on schedule we arrived in the morning on Day Five and were home by early afternoon. We even unloaded the car, though doing that nearly finished me off. I gratefully collapsed and was lovingly cared for by TLOML.

So here we are. Still not a single argument nor a cross word. Every decision has been reached by consensus. It's almost freaky how well we relate and how easily we get along. We are both quite emotional and sensitive women yet we seem to be able to help each other get through and over things more easily. It occurred to me that we defuse each other. Somehow we give or say the right thing at the right time. It is almost like between us we have a self-leveling mechanism that settles and resolves the issues that each of us has sometimes struggled with alone. It feels like we have always been together in the way that we manage to interact with virtually no anxiety. I can truly say that I have never had any relationship, in any capacity, even in work or in friendship, that was so harmonious. She is slender and beautiful with sparkling blue eyes that make me melt from any distance and I am completely, head over heels, besotted with her. I'm my own flawed and dilapidated self and yet she loves me, I mean, she really loves me and constantly demonstrates it with care and affection. Between us there is an easy flow of loving words and acts that completely back up and support the words. Doing not just saying. I am quite sure that we should be handing out nausea pills to anyone who has to spend time with us together.

We sometimes wonder what might have happened if a fortune teller had shown us a picture of this time and place when we were schoolgirls together 32 years ago. We both think we would have said "Why wait?" The interesting thing is that the answer to the question "Why wait?" was only revealed by the waiting. We have each learned some hard lessons and seen some dark days; enough to know that something as beautiful as this needs to be cherished and protected; enough to know that, as perfect as it feels right now, there will be obstacles and difficulties we need to face together as time moves on; enough to know just how much we should appreciate each other - we know how lucky we are.

So what would The Chef think?

I hope she would be happy for us both!

A New Life Begins...

2012-01-17T03:05:00.000-08:00

I can't believe that it is nearly two weeks since I wrote a blog...

Believe me it has been an amazing ride!

This afternoon, my car was loaded on a barge and set sail into a brisk north easterly breeze. Poor Shermie (my car) was jam packed to the roof with all (well nearly all) of my possessions. It was the last leg of our 2400 km journey. We are here. We are "we". We are astounded, excited, and frequently delirious with delight. I am now ensconced on the couch at TLOML's house which is now, as of today, our home.

Tomorrow, I will try to write the real story, I'm just too tired and happy to do more than write this note.

Thank you Herbert.

On the move again!

2012-01-04T04:22:00.000-08:00

Oy Vey!

Tomorrow I am returning from the tropics to glorious Sydney. TLOML and I are being picked up at the airport by The Best Friend, which is wonderful. Then back to her house to see The Boy and home to The Horsewoman's house to pack up my things and get ready to move... (again)...

I think I have moved seven times in the two years that ended on Christmas Eve. It has been far far too often. This coming move will be my eighth in twenty-five months. The last move was the hardest... Culling twelve years of accumulation into six checked bags across the Pacific was exhausting, heartbreaking and expensive. I was ruthless and I am still looking for things I left behind. I had this stupid outfit of girl clothes... white pants, a mauve tank top, and a crinkled floral over-shirt of white with mauve flowers... I have the bloody ugly shirt that I never liked, and the tank top that goes with nothing else I own, but can I find the damn white pants (the only useful part of the outfit) anywhere? *big frustrated sigh* I just have to console myself that I made the best decisions I could at the time, as TLOML so often says "We are all just doing our best".

Part of me is dreading the return to Sydney because it is going to be incredibly hectic. We both have people we love who we want and need to see. In the four months since I returned to Australia I have reached out over and over to my old friends, my friends from school and university, my friends from my crazy early jobs and even my ex-girlfriends and without exception they have welcomed me into their lives in spite of my pathetic attempts to maintain contact over the decades. I can't just jump in my car with TLOML and smile and wave and yell "So long and thanks for all the fish!" I love and appreciate my old friends and I really want to get a chance to see them again this trip and thank them. I will be leaving The Boy and although I know he is an adult now he will always be my baby, for that matter he is also one of my best friends and is a trustworthy confidant and a thoughtful adviser. I have really enjoyed being as close to him as we have been the last couple of months.

Of course there will be other trips to Sydney but this move is really significant. I am packing up and piling my junk in the car and heading 2400 km (about 1500 miles) north with every expectation of staying there forever.

TLOML and I have had a busy and quite stressful couple of days tying to get ready for the return to Sydney and struggling to coordinate the competing priorities of the people in Sydney, and even to some extent, the people up here. Still we have not had a cross word or a moments disagreement, if anything we have both been a calming influence on each other. We are well aware that "real life" will not be the same as either the lazy days or the frantic preparation this "holiday time" has provided but I'm pretty certain we will be fine. I will be studying and she will be back at work and I think we will eagerly anticipate our time together.

So here I go again another giant leap of a move but somehow this one just feels different, it feels right and it feels relaxed in spite of the chaos of the time in Sydney. I do feel anxiety about getting everything done and seeing everyone we really want to see but I have not had even one moments anxiety about if this is the right decision or if TLOML is the right person. I named her TLOML and that continues to be the most apt and accurate description.

We will be fine because we will be together.

2012 Might be the end of the Mayan calendar...

2012-01-01T18:52:00.000-08:00

It might be the end of the world but it is the beginning for me...

I don't care if the world ends in 2012 as long as we all go together.

Eleven is my lucky number - I was born on the 29th day of the month. When I choose numbers for anything I choose ones that add up to eleven... 47, 56, 83, 29 etc... If I go to an auction I choose a bidding number that adds to eleven... 155, 128, 173, 92 etc... I had great hopes for 2011.

Throughout most of the year (2011) it was appearing NOT to be all that wonderful. I was sick, I was unloved, I felt unlovable. Those of you who have read my early posts pretty much know how dark 2011 was for me. That is until the 11th month.

At 11.11am on the 11th of the 11th of the 11th I wrote a wish list. Since the day after I wrote that list my world has been as different as ice is from fire. My life has taken a 180 degree turn (should I say a 182 degree turn?).

The first and most substantial change that will occur in 2012 is that I will be relocating from Sydney to a tropical island on the Great Barrier Reef. I will be living with TLOML who is without doubt the most beautiful woman, inside and out, I have ever had the privilege to love.

Soon I will commence study for my Masters which will give me a focus and an opportunity to succeed. Most importantly it will give me a viable intellectual activity that I can do while lying down... I still need to spend a generous part of my day horizontal.

2012 appears before me as the happiest and most fulfilling year of my life and I AM READY!

I am ready to be happy, ready to be loved, ready to love, ready to study, ready to accept my health, ready to succeed, ready to be fulfilled.

If the Mayan's are right that is just fine with me. If they just ran out of room on the stone well that is fabulous too!

Laughter and being talkative...

2011-12-29T21:06:00.000-08:00

I don't think I have ever laughed more than I have laughed in the last couple of weeks.

Most of the things TLOML and I laugh about are too silly to describe... I could say "you had to be there" but even that was not enough for the poor girl sharing the row with us on the plane. Last night, taking my nightly meds, we were giggling, as we so often do, when TLOML pointed out that I was laughing too much to take my antidepressants! If laughter is the best medicine I can probably cease all other treatment!

One of the really strange things that has happened to me, since this wonderful falling in love experience began, is that I have become incredibly talkative... a real chatterbox. Anyone who knew me as a kid will not be at all surprised because I was quite hyper-communicative as a kid... I laughed a LOT, smiled a LOT and got the gabbles with monotonous regularity. My mouth was constantly struggling to keep up with my brain.

I wrote in a blog a few months ago that vim and vigour had vamoosed and that being in pain and somewhat fatigued all the time had removed my "live wire" personality. Well no sooner do I write the words than this miracle comes into my life and makes me a liar! Suddenly I am animated again, enthusiastic and effervescent; suddenly I am busting to talk about everything and to tell my stories... I have again developed verbal diarrhea! Just like the old days!

TLOML and I are quite alike in many ways (aside from sharing the same unusual name) we are both lively and excitable, talkative and giggly, thank Herbert we both love those qualities in each other as well. Back when we were at school together (over three decades ago) we used to get into trouble for talking and giggling together and not much has changed.

But everything had changed... I had lost that zest for life, that certain joie de vivre that had been such a hallmark of my childhood and early adulthood. I think I had become grumpy and even at times perhaps ... morose... (eep that is hard to admit). I'm trying not to be too hard on myself about this because it really was situational... I have been through some very difficult times and suffered some gut-wrenching losses. On top of that my vitality, which was such a part of my very identity, had flickered to a barely discernible glimmer.

My mother (my oft quoted mother whose death was one of those gut-wrenching losses) always said it was "darkest before the dawn". In this case she was so SO right. Things were pretty grim.

Well not any more!

I am still hurting. I still NEED to be horizontal. I still get tired far too quickly. My balance is still crappy. But things have changed in so many ways and for the better. When I'm hurting TLOML asks me what I need and how she can help. When I need to be horizontal I often have company and laughter. When I am tired I am soothed and spoiled and brought cups of tea and loved and cared for. When I stumble or lose my balance TLOML is there to hold my hand and steady me.

There is no doubt in my mind that I am the luckiest woman on earth, not only for the love and care I receive, but for the laughter and chatter that fill our days and envelop us in a giant bubble of happiness.

In spite of this nasty condition my old talkative self is back with a vengeance!

Christmas in the tropics

2011-12-26T00:28:00.000-08:00

I must apologize in advance that my brain has turned to mush and I have lost any pretense of incisive wit or erudite commentary on the world at large.

Yesterday, on Christmas day, TLOML and I rose very early and headed to the airport (her lovely and dutiful brother gave us a ride), we set out on less than four hours sleep. I think we could both have been forgiven for being crabby, overtired and short tempered. Two flights, an hour waiting, twice, in two different airports, I think grumpy is understandable. On the first flight someone had put their bag in the overhead locker over me and their water (I hope it was water) had dripped through the side of the bulkhead and poured down on my shoulder. At the airport mid way, we both, in turn, waited through long rest room queues.

Well, I have to admit that I am playing with you, dear reader... We were unfazed by any obstacle. Never has flying time or waiting time gone by more quickly. Any thoughts of naps on the plane fell by the wayside in paroxysms of giggles and almost uncontrollable laughter. The flight attendant was so delighted with our laughter over the dripping locker that he gave us a bottle of wine. On the second flight we happily played hangman for over an hour and laughed so much that the man in the seat ahead of us was giving us dirty looks. Laughter is very disruptive.

TLOML has some really wonderful friends here. We were picked up from the dock and dropped to her house and then we dropped by to her best friend's house where we hung out in the pool and ate delicious Christmas leftovers. In the evening we went to another of her friend's houses to a party that was full of really terrific people who were good fun, welcoming, and easy going. Lots more laughter and lots more yummy food (including a home made rocky road that was absolutely sinfully decadent!!!).

Today has been outrageously slothful including eleven (yes count them, eleven) hours sleep overnight AND a mid afternoon nap of over two hours! One of my best friends from the US, and her girlfriend, called on skype and the four of us chatted. TLOML went to make a cup of tea and I told my friends how incredible all this is... There has not been a single thing that has been obstructive or difficult, every potential obstacle resolves itself before we reach it, I told my fellow ex-Minnesotan friends that it feels like driving behind the snowplow! Every step we take seems to have been cleared in advance of our arrival. Falling in love has never been so easy nor has it ever seemed so natural and perfect before. The unbelievable fact that this amazing and beautiful woman loves me too is just the most incredibly fantastic and awesome event in my life! (Have I included enough superlatives in that sentence?)

Right now I am lying naked in her bed while a balmy breeze blows through the window, the sun is setting and I have a view of tree covered hills, palm trees, and (just so I don't forget I am in Australia) there are gum trees moving in the breeze. TLOML is making dinner (which has just started to smell delicious), she has popped outside to put her chooks (chickens) away for the evening, a kookaburra is laughing in the distance... It is idyllic.

Can you blame me for letting my brain turn to mush?

I survived

2011-12-24T05:15:00.000-08:00

Actually I survived and perhaps even prospered.

It is midnight and Christmas just began with a kiss...

In four and a half hours we have to get up and go to the airport from whenc. we shall jet away to TLOML's island home.

The family do today was very nice and went quite well. I think we were all being rather careful to stay on our best behaviour but it was successful. My step-sister really rose to the occasion and kept the conversation light, bubbly and inclusive, my nephews were terrific and my straight brother and I exchanged phone numbers and even shared a chuckle or two. The Boy was charming but a little distant and I am glad he had the opportunity to spend some time with his cousins. All in all not too bad!.

The evening was spent with TLOML's brother and his family and The Boy and I could not have felt more welcome. It was a lovely evening capped off by a call from TLOML's niece who is in Germany. She especially wanted to talk to TLOML and I which was really special and inclusive.

Things are going pretty damn well actually!

I need to talk about the physical stuff soon but I just don't have time for now... surviving on that front has been a bit more of a challenge but more on that later.

Gush, swoon, gush...melt...swoon

2011-12-20T21:23:00.000-08:00

I have been having a wonderful time with TLOML. We have spent time with her brother and his family and it has been really delightful to see people interacting with her and loving her. They are a loving family and clearly she brightens their world as she does mine.

There has not been even one thing that has not gone beautifully. I feel like I am living in a love story, I would say a romance novel but there has been no conflict or crossed wires to hang a plot upon... We are actually sickly sweet and swooningly into each other. She is very solicitous and thoughtful; in some ways more sensitive about my need to conserve energy and take it easy than I am. I'm loving being cared for and cared about but I do get a bit stubborn about wanting to contribute.

Today we did a massive shop because tonight we are having a dinner party. While up at the mall I took her in and introduced her to my little mate at the optometrists (he agreed with me that she is beautiful and was very happy for us). Mostly we have been spending time with her friends and family which is wonderful for me. I don't have to carry the conversations and I can sit back and watch her interacting with her people. Tonight we are having two other lesbian couples for dinner. The first couple are the people we stayed with when TLOML first arrived. Lovely women, her long time (childhood) friend and the friend's Irish partner. The other couple are friends of mine, my long LONG ago (early 80's) first serious girlfriend (actually the first person I was ever in love with) and her terrific current partner, who I have only met twice but who I really liked on sight. It should be a good evening.

I'm going to make some garlic prawns and scallops and serve them over French bread and then we are also going to have roast pork, apple sauce, and some baked potatoes and pumpkin with steamed green veggies too. It has been fun planning together and shopping for dinner. I'm lying here getting some horizontal time while TLOML makes us some lunch.

My Gay Brother has reached out to me which is fabulous and he and his partner will be down in Sydney on Friday evening in time for us all to go and have dinner. That will be the first and only introduction of TLOML to my family this Christmas... Well not including The Boy - he will be getting home tomorrow (Thursday) and I'm picking him up at the train station at sparrow's fart. I expect he will meet with TLOML some time tomorrow, maybe in the evening.

All the pieces just seem to keep falling into place for us, I can't believe how wonderful things are, how natural and perfect it all feels, how compatible we are. I am spending a LOT of time feeling incredibly grateful to Herbert. I was so low so recently that it is hard to believe this spectacular turn of events. Sometimes I just smile and shake my head and I can hardly believe that it is the other Displaced from school... Of all the people in the whole world WE have fallen in love with each other after 31 years apart. In all honesty I am having to downplay this for you or you would all have to be taking turns at throwing up!

EXTRA EXTRA Read all about it!

2011-12-18T01:39:00.000-08:00

Quick post... women in love don't have much time for writing...

Things are kicking arse and taking names here, going gang busters, awesome, wonderful, phantasmagorical even!!! Those of you who predicted that I would indeed find true love (here two months to the day ago) were RIGHT!!!

TLOML is everything I could have ever dreamed of ... words escape me... (clearly I have got it really bad!!!) In my wildest dreams I never imagined that I would have a woman as fabulous as she fall in love with me. I am totally smitten, overwhelmed by her humour, her beauty, her kindness, her loving approach to life, and quite frankly everything about her! I'm like the cat who got the canary and I am spending part of every day saying... "pinch me is this real?"

Christmas is looming... We spent time with her family today and I know now that after enduring, and hopefully surviving, our Christmas-family-stress-out The Boy and I will both be welcome to join their family for the evening. We will get to see people being loving towards each other (for a change)...

TLOML is busy telling me that I should not put her on a pedestal and that she is far from perfect... I know, I know... I'm not unrealistic I just know, and acknowledge, a good thing when I see one!!!

Dear Mum, Happy Birthday.

2011-12-15T22:26:00.000-08:00

Dear Mum,

today is your birthday and you wouldhave been turning 94. Every year since you died I have written aboutyou and told my friends what a wonderful woman you were and how muchyou will always live on in my heart. Yet every year since you died Ihave not been able to speak clearly of my own life because I haveknown that you would have been worried for me and perhapsdisappointed.

When I went back to the US after yourdeath I seemed to draw some strength from you and I found my spineand almost immediately extricated myself from the terriblerelationship I was in at that time. I just knew that you would neverhave wanted me to be abused and manipulated as I had been.

Finally, three years after your death,I have things happening in my life that I know would make you happy. I've been living in the Eastern Suburbs of Sydney, in your oldstomping ground, and the memories of you, my aunts and uncles and mycousins, are very strong nearly every day. You are omnipresent in mymind.

I know you often thought my partnersdidn't treat me well enough. I always knew the bias of your love andthe way you so selflessly cared for the boys and me. I knew thatyour standard was virtually unobtainable. But Mum, I think I'vefound the one you would have loved. She is everything the otherslacked, soft and good humoured, ready to laugh, kind, caring and ohso very loving.

I sometimes wonder if you would perhapsremember her, or at least remember my speaking of her. She doesn'trecall ever meeting you but your steel trap of a mind would rememberher if you had met when she and I were at school. I wish you werehere to see how she loves me, I think you would approve. It's a bitlike the one really good relationship I had, only better. I'm moreready now, Mum. I couldn't stay still before; I was stagnating.

All of my life you only ever wanted tosee me happy and yet the last ten years of your life you saw me inalmost every condition but happy. I'm happy now. Mum. For once Ireally think I am with someone you would have loved.

I'm sorry the boys and I have not stucktogether, I know that was your dying wish, I will try – I will seethem both at Christmas and I will forgive and be open to closenesswith them. The Boy will see his cousins and I will take it all infor you.

Happy Birthday. I love you.

Old friends, New friends and friends becoming ???

2011-12-14T03:25:00.000-08:00

What an interesting day it has been!

Today I went out to Parramatta and met up with The Boy and then we were joined by The Lioness and her lovely daughter for lunch. The "kids" discovered a shared love of the TV series "Charmed" (I can't believe how into it they both were... discussing costumes worn in particular scenes!!! I asked The Lioness if she could name the clothes worn by her favourite characters on MASH - Green Uniforms Of Course!!! Life was simpler when we were kids LOL).

The Lioness is one of those people who I have loved since the day we met. I remember well our meeting. I had been cast in a student production of the play Woyzeck (A torturous painful story) and The Lioness was to design the costumes and the set. I went back to her house for a cuppa that day and we have been friends ever since. At times we have been disconnected by time and distance but I have never felt anything short of love for her. Now here we are, each with a child who just finished school, all lunching together. It was lovely and too brief but the love was strong and it always will be.

After lunch we popped in to visit some new friends. I met her at the hospital on Eileen's birthday... the last time I saw Eileen. The Boy and I became closer to her and her family at the funeral. It was a lovely but brief visit. Such warmth and kindness from new friends. I have been giving her some business advice from my marketing days... I should have thought to take her a copy of my book... Sometimes I don't have the bright idea until too late. Oh well - Next time!

Tonight is the last night before TLOML arrives in Sydney tomorrow afternoon. For some reason I seem to have reached a place of calm certainty. Suddenly I'm not as nervous as I was. I'm not as excited as I was. I'm not as wound up by it all. I just feel very calm and steady. I feel very warm and comfortable and loving - not nearly so frenetic as my energy has been in the lead up. Almost fatalistic. In truth what can we be but fatalistic? It will be what it will be and I will always treasure this time, this phase; it has its own merit and value. It's too late to start trying to make myself beautiful - that project should have been commissioned twenty years ago!

In my life I have only ever met two women who bear my name. One was a sales assistant in a department store when I was a kid... a stranger in a black dress who said "that's my name too". The other was TLOML... When I try to imagine how many people I have met in my life time it is inestimable. The shared name is freaky weird but our relationship isn't freaky or weird in any way. It just seems natural. Whatever happens I know these things, we are both sensitive and kind people, we are both honest, there will be nothing harsh or unfeeling.

And who knows... this could be it... this could be forever... maybe we really are living in a love story! It sure feels like it!

Thoughts on vulnerability...

2011-12-12T21:12:00.000-08:00

I was raised by the ultimate stoic.

"Never let them see they've hurt you."
"Never let the bastards get you down."
"Don't give them a victory by letting them see you are upset."

I'm a pretty obedient person in most ways and I took these messages to heart. I worked on trying to always hide any hurt I felt. I can't begin to tell you how much time I spent crying in the bathroom on my visits to my father's house as a kid. It felt like I was always suppressing tears, always trying to recompose my face so that I could get out of the bathroom and face people.

School was similar. I remember countless times trying to hide my pain or trying to hide the effects of tears. I was bullied and teased. One might call it harassment It peaked in 9th grade. That was the time when the "wild girls" were really wild! They were vicious, cutting and relentless. I went to a private girl's school in Sydney and teenage girls can be completely heartless.

There was a moment in year 10, I think, but it might have been year 11, when I accidentally overheard something that changed the way I think about the face you show to others. I was at school with a girl who is now very successful and quite well known in the UK and here in Australia too, I will call her The Chef. In year 9 The Chef was one of the cool girls, she was rather mean and was definitely a wild girl but with the passage of time we became friends. We used to have a double free period between recess and lunch in year 12 and she and I would to jump in her car and go out to Watson's Bay and sit on the pier eating fish and chips. We played hooky together and contemplated life, the universe, and everything, Back to year 10... The Chef and I were in our transition from enemy to friend. On day I was in the bathroom shut in a cubical. I heard the door crash open and the sound of someone crying, within moments the door crashed open again and I heard one of the teachers speaking to The Chef. The teacher was making consoling noises, trying to calm her down. I didn't quite know what to do. I was accidentally privy to a very private moment. I remained silent. Then I heard The Chef say something that really impacted my attitude to vulnerability. With a tear-stained voice she said, "Why can't I be more like Displaced? None of these people ever upset her."

I was STUNNED! Totally gobsmacked. I was stunned for a number of reasons... Firstly I was surprised that my act had worked - I had completely fooled this person who had been one of my tormentors. Secondly I was stunned to find that she actually thought I wasn't hurt. I was also really surprised to hear HER say something positive about me, as if SHE admired me. At that moment I began to wonder if maybe my mother's methods were not the ideal methods for me. Perhaps if I were to show my pain more people would realize they are hurting me and back off. Perhaps it wasn't all about victory and winning. Since that day I have always been more cognizant of my feelings and of how much I repress them. I have worked on becoming more open and honest about my vulnerability.

Today I saw my Psychologist. I was talking about the forthcoming Christmas affair. The subject rolled around to how I handle my condition, my disability, with them. Instantly I knew that I would suck it up and fake it until I couldn't stand it any more. I have tried to talk to some members of my family about my condition but they just don't seem to get it. I get a lot of comments like "yeah getting older sucks" and "oh me too I get a bit of arthritis in my knee now" They just don't seem to get that I am in constant pain and that I am immobilized by breakthrough pain. They don't hear me when I say I am having terrible fatigue. I share the responsibility for this. I have a really hard time letting people I don't completely trust know my soft spots. There is not a lot of trust here. I am loath to show my weakness. This is really adding to my stress level as regards the Christmas gathering.

Between seeing the Psychologist and starting to write this blog I received a couple of really nice messages from my nephew.... "Hello Aunty"... I haven't seen him since he was about 4, he is a little younger than The Boy. This is the first time we have messaged on Facebook, though I do keep an eye on his posts and occasionally I comment. He is really excited about everyone being together for Christmas... Maybe it will be okay.

Vulnerability has gotten me in trouble many times. I have revealed something personal to the wrong person and had them use that information against me. Betrayal has been a painful recurring factor of my life. Yet I open my heart and mind through this blog every day. Why is that different? How come I can trust the stranger who is reading this *waving* and not my own family? I strive to be as open and as vulnerable as possible in this fledgling relationship; I don't want to start a new life on a false or brittle foundation. I know I can survive almost anything. I know because I have been to the depths of despair and I have lived. Trust is a precious and fragile thing, no amount of superglue can put it back together once it has been shattered. How many layers of positive and caring interaction does it take to cover the cracks of broken trust? Too many.

Yesterday I was sent a link about 30 things to STOP doing to yourself ... I found it pretty interesting. The first one is to stop spending time with people who suck the happiness out of you... Hmmm... It has been very thought provoking. We'll see.

Health/Love Update - Counting down!

2011-12-12T02:27:00.000-08:00

Today I had my last visit for the year to Professor McCool.

He, like everyone who sees me, couldn't help but notice the elevation in my mood and energy level. It was an uneventful visit comprised of reports on a series of negatives. They say you can't prove a negative and I suspect that is the problem with rotten old Fibromyalgia. Until they can find some specific physiological symbol we are just a bunch of people with a range of similar symptoms who aren't testing positive to any of the things that could be causing our problems.

Good news was that the MRI was totally clear and my brain (and I resent this comment) "is perfectly normal". Aside from the slight against my exceptionalism it really was very good news.

I don't have any of the odd things he was looking for. There are still some irregular markers of an auto-immune condition in my blood but whatever it is has decided to remain anonymous. He did tell me to go ahead and take the Lyrica prescribed by the Pain Clinic, but he was concerned that it would need to be increased and the Pain Clinic doc had not allowed for that in the script. I was on Lyrica for a while in the US (before I ran out of health insurance) and it had no effect but who knows? It's worth a try.

I have been feeling pretty good lately. Fatigue levels are quite low, baseline pain is manageable and breakthrough pain is nasty but at least it isn't constant. It might not surprise you that this growing thing with TLOML is keeping me pretty excited and upbeat. We are down to counting hours (being inside 3 days). In the last few days we have progressed to talking on Skype.

It's interesting but this relationship has moved through these stages of growth in such a way as to remind me of when The Boy was young. Those of you who are parents will probably identify with this metaphor. You have a baby and it stays whereever you put it then it starts to roll over and sit up and you LOVE the new stage but a part of your mourns the old one... Then the baby starts to walk or crawl and becomes mobile and you LOVE the new phase but you mourn the one that has passed... Then they become fully fledged toddlers and you LOVE etc etc... Then you have a school child and you LOVE etc etc and so on through to adulthood. I distinctly remember the pain of knowing that my baby wasn't a baby any more, my little kid was a teenager, my teenager is a man... I have felt this way during the growth of this relationship... we started with instant messages... moved to texts... to phone calls... to skype... in less than three days we will be together. Each phase has its joys and leaving each stage has been a little bit scary, a little bit sad, and a big bit exciting!

I saw a documentary a while back (I have tried to find information on it unsuccessfully) in which scientists identified scent profiles and who would likely be attracted to them. Then set a bunch of hetero people loose in a cocktail party kind of environment with instructions to sniff the necks of the people of the opposite sex. They then compared the participants statements of how attracted they were to the various opposite sex participants. The interesting thing was that there was a strong correlation with the chemical analyses prediction and the anecdotal reports. Their conclusion was that we are pre-programmed, chemically, to be attracted to certain scents. It appears TLOML and I have only the scratch and sniff component of this relationship to confirm. We are wondering if the scent profile for people who like each other as friends is the same or different... Mostly because we already liked each other all those years ago when we were nearly blank slates.

Between you and me (and the giant internet stranger who might be reading this) I think the pheromone check is almost a formality *Smile*... I just hope I can live up to her expectations.

Stay tuned for more news ... same bat channel... same bat station!

Women Do Something (Continuing the conversation)

2011-12-11T00:59:00.001-08:00

A couple of weeks ago I attended an event called Women Say Something and, naturally because I tell you guys almost everything, I blogged about it. Thanks to that first event and the wonders of Facebook I am now hooked in to some super cool active women, the kind of women who get off their arses and make an event like this happen. It seemed natural that I would go to the follow up event, after all it was free and I am broke, it's about feminist issues and I'm a feminist. Best of all the event was attended by the fabulous Kimberly Dark.

Kimberly is a sociologist and a story teller. She uses humour, irony and anecdote to open our eyes to the strange and interesting diversity of thought and perspective in our world. I feel privileged to have had the opportunity to attend and to enjoy her work.

Me under the star with the star of the show, Kimberly Dark.

Lots of very interesting topics were raised and discussed by the group. Many would be worthy of exploration and commentary. The thing that resonated with me most intensely was the need to hold to our beliefs and represent our points of view every day in as many situations as we encounter. One articulate young woman pointed out that thirty or forty years ago there was a huge gap in equality, it was blatant and gaping. It was easy to see the cause, to know what was needed in the fight for Women's Liberation, for the Women's Movement, for Feminism. So many things have changed and so many barriers have been broken down that it is more difficult than it was back then to simplistically categorize the target. Yet inequity still exists in every arena. As the young woman put it, "there are many small gaps rather than one large one".

I can't remember a time in my life when I did not believe that we influence the world one person at a time. Mostly, on a day to day basis, I just try to make people smile in the hopes that they too will make someone else smile. Long before that disgusting schmaltzy movie "Pay It Forward" claimed the high ground I believed in the difference small interactions can make. As a lesbian I have always been "Out and Proud" in virtually every situation I have lived through. This is how you combat homophobia. You keep showing people that gay people are just normal everyday people like them, they/we are their friends, co-workers, family etc. I don't think anyone has ever said this better than Hilary Clinton did recently at the Human Rights Day in Geneva, here courtesy of the Huffington Post is a transcript of her brilliant speech.. I digress...

Feminist is (as Girlwiththecane said in a comment on the last blog) still a dirty word.. But I don't really care what we call it (though it would be convenient to have a title that symbolically represented basically the same thing to everyone) but I do care about women and equality. I believe we need to not shirk the day to day responsibility of having the courage of our convictions. The courage to clearly state what we believe and why it matters to us. I believe that we need to be Out and Proud as women and as feminists (regardless of the title). We are 51% of the population, the world over, and we own less than 1% of the world's property.

Courtesy of Girl's Guide to Taking Over The World

This fight has not been won.

This struggle is not over.

This complacency is killing us.

Every day in every interaction, we, the ordinary people not just the high profile organizers and activists, WE need to take this debate to our friends, our co-workers, and our families...

Stand up and be counted or stand down and be trodden on.

(As an aside some of the women were kicking on for a drink at my old stomping ground The Imperial but unfortunately I was starting to get that urge to be horizontal so I gave it a miss... maybe next time!)

What a difference a month makes...

2011-12-10T18:24:00.001-08:00

One month ago I posted a blog

11/11/11

In that blog I made a series of wishes. Strange events have been afoot since I broadcast my wish list into The Universe (aka Herbert). Many of my wishes were for the planet and for all people and it's hard to tell if they are coming true. Six of the wishes were specifically for me. At the time that I wrote the blog times were pretty tough for me. I was seriously flaring and in a lot of pain and I was dragged down by tremendous fatigue. I had other basic personal issues that were causing me a great deal of anxiety too. I felt unloved and unlovable.

The 11th of November was a Friday. I was born on a Friday. "Friday's child is loving and giving".

The 12th of November just happened to be the birthday of one of my old friends from high school. We were connected on Facebook and you know how you get the birthday notification? Well I left her a brief happy birthday message. Later that afternoon I saw, for the first time, that she was online. I umm'd and ahhh'd about sending her a chat message; I didn't want to intrude. Finally I decided to say "hi" and ask if her birthday was going well. My entire world has changed because of that message. I know that seems a little drastic but it is completely true. My old school friend is TLOML. We started talking and we have not stopped. She is everything I never dared to dream of in a partner and for some strange cosmic reason she seems to adore me too.

On the 14th of November I had my first appointment with the Immunologist Professor McCool. He has taken an aggressive approach to trying to identify all the various issues that are plaguing me. He has also put me on an anti-depressant for pain. I have been doing better since I started to see him and I feel a real sense of security as his patient.

Since the day I made those wishes I can honestly say that each of the six wishes, that was personal in nature, has been positively impacted.

I am more healthy - not perfect but substantially improved
I am loving and I am loved in return
I have the hope of a safe and comfortable environment in which to live
I do not have as many things that are worrying me
I have laughed more in the last month than in the 12 months before combined
I have been spending a lot of time with interesting, caring, socially conscious people and there is the a promise of much more to come in that area

So there you have it. It has been quite the turnaround. In the last month I have fallen in love with someone I have liked and respected for over 30 years. I have gone from quite a dark and depressing situation to one of great hope. I feel easily twice as good as I felt then. Maybe I am just high on that drug money can't buy or maybe ... just maybe ... Herbert has decided it's my turn to have some of my dreams come true.

Makes me wonder if maybe I should have wished for buckets of money too... oh well... money is nice but it can't hold your hand when you are feeling crappy, it can't make your heart leap and your eyes glow, it can't open your mind and enlighten your conscience, it can't make a beautiful woman swoon (well not the kind of woman I would ever be interested in).

The more I talk with TLOML the more it seems that we were kind of destined to be close. We share strange things. Other than our time at school together there have been numerous times we were in the same places, frequenting the same haunts. Here is a little list of some of the odd coincidences.

We have the same unusual name
Our Dads were both doctors
Our Dads left our mothers when we were the same age (6)
We both have older brothers (her one me two)
We are both the youngest child
We both had step-mother issues
Though I come from completely the other side of town my step-mother took me shopping as an 8 yr old in her neighbourhood (she and my Dad lived there when they were first married)
She knew my first cousin before she ever met me
We swam at the same harbourside beach as kids - we might have even played together who knows?
Then we were at school together and sat side by side in Geography and Home Room

Although we have not seen each other since school....

We attended the same University, and took the same subject, in the same year
We share several mutual acquaintances
We both lived in the same rural region during the 1990's
She worked at a place that I have been to many times

Now to the present

Her nephew is in the same class at school as The Horsewoman's daughter (which is why I got a weird facebook friend suggestion for the lad - we had two mutual friends)
The Horsewoman sat next to TLOML's brother and sister-in-law at a school function recently
We are both single
We are both 49
We are both ready to make a relationship that buries forever the dysfunction of our previous relationships
We are both crazy about each other!!!

Now I understand that Australia is not as heavily populated as the US but Sydney is a city of over five million people. These kinds of things don't happen every day. You talk about five degrees of separation.... try heaps of versions of one and two degrees of separation? It feels like all roads lead to TLOML and I might have been a moron not to get the message any sooner!!!

In reality it is the right time and the right place... I think we are both ready to be happy and I am enjoying every second and valuing it as a gift from Herbert!

Batting out a quick blog!

2011-12-10T03:04:00.001-08:00

Well I have had a really lovely day today. Sydney was looking sparkly and bright, not too hot and not too cold... beautiful one moment and perfect the next! (to steal the old Queensland advertising slogan).

First I got to have a wonderful long talk on the phone with TLOML and everything is copacetic and blissful in that direction. (Only 5 days until she is here!!!) Then I went over to visit with my friend The Actress and her delightful hubby The Percussionist, I got to gush over these developments in my personal life and bored them silly I am sure. We went to see one of the houses on their street go up for auction, which was very interesting. I spent a few years working as a Realtor back in Minnesota so I found that quite educational.

Then I wandered off to visit with The Best Friend and her wonderful hubby The Optimist and they were having seafood night! Yahoo!! I brought the wine and we enjoyed fabulous garlic prawns and then fresh crabs (that were sweet and succulent and totally delicious). Then we had a beautiful fruit salad with banana, mango, and peaches - to die for I swear! The Boy was there and it was great to spend some time with him. He was getting ready to go out with friends, hitting the town on Saturday night. Had a cuppa with The Best Friend after dinner and bored her silly too. My friends are so patient with me.

My fatigue level was really low which is wonderful and the baseline pain was totally manageable. I have to say if every day was as good as today I think I could rule the world.... Not that megalomania runs very strongly in my veins.

Now here I am. Showered and clean , and sans all the crabby mess I acquired eating dinner and very shortly, probably the moment I post this blog, I will be settling in for a good night conversation with TLOML. To put it bluntly... How much better does it get than this???

The Universe (aka Herbert) was shining on me today!

Shopping... ugh...

2011-12-08T18:46:00.001-08:00

The other day while I was waiting in the pain clinic I saw an advertisement on TV for some shoes. I need some new shoes. When I came home from the US I was RUTHLESS, I tell you, I was completely devoid of all RUTH! Any shoes that were uncomfortable, worn, of just plain ugly were unceremoniously consigned to the Goodwill. Any jeans or shorts that were too tight, same destiny. (I still ended up with so much excess baggage to cost me nearly $1000 in baggage fees AND my carry-on bag was over 50 lbs and I couldn't lift it into the over-head locker without some help!)

Unfortunately among the rejects were some very nice semi dressy sandals that had a little heel (maybe an inch and a half), I used to wear them but the leather was a bit hard over my toes and they cut into my feet if I was in them for to long. I also ditched my crocs (making The Boy happy because he thinks they are the ugliest shoes in the world) and my 'go to' comfy heels. So anyway, the shoes advertised were very reasonably priced and I thought I might find something suitable there. There was only one problem... None of their stores are anywhere near where I live.

So today, after a pitiful night's (I say euphemistically) sleep I decided to head out to the factory outlet stores in the western burbs of Sydney. In spite of the fact that I arrived only fifteen minutes after the centre opened there was no handy parking, and there were definitely no disabled parking slots. I'm not sure why but it seems here in Australia there are more "people with babies in prams" parking spots than disabled ones... I'm not sure why, but if I ever figure it out you will definitely hear from me. I eventually found a parking spot and made my way into the stores. The shoe outlet definitely did have lots of potentially suitable shoes but they only had a couple of chairs to sit in while trying on the shoes and working one-handed (as my other hand was busy with my portable banister) I juggled several pairs to try on. I chose a nice pair of sandals with about a two inch heel and for good measure (and to annoy The Boy) I popped for the $5 for a pair of navy blue imitation Crocs too. There is a reason I, a butchish lesbian, wear heels... I know it seems a little incongruous but I have bilateral partial ruptures of my Achilles tendons and flat shoes cause all kinds of pain in that area (unfortunately heels cause all kinds of pain in other areas far to often). A glance towards the two open registers showed lines of at least ten people each, so seeing as I was already there I decided to check out the jeans. The good news is that I have lost about three inches around my waist! (Never fear there is still plenty of me to go around, or should I say to be gone around?) Anyway I did choose a pair of French blue jeans that I think look a little more flattering than the super baggy over-sized jeans I have been wearing lately.

Queues are NOT my friends. Not only am I forced to be on my feet for much longer than is actually comfortable but I also have some issues about having strangers in my personal space and so I get a little anxious when I am in any kind of a "crush" of people. I generally have to practice some self meditation to endure a queue, I picture golden sands, soft breezes, palm trees etc... I waited, for the most part with good grace, I did get a woman behind to hold my place for a moment while I grabbed a shirt for The Boy's Christmas present. I finally paid and escaped and had a collapse for a few minutes on one of the couches in the middle of the passageway. I did make one other purchase of a Christmas present from a cooking shop but by the time I was out of there I was seriously dragging my arse (which is ironically the antithesis of "hauling ass"). I was moving very slowly. Normally my left side is much more painful than my right, for some reason, so I have become accustomed to holding my cane in my right hand but typically today, when I am also carrying shopping bags, my right knee decided to demand my attention. It was very odd trying to coordinate with my cane in my left hand... it felt wrong.

When I got back to the car I was so relieved to flop into the seat that I just sat there for a while before pulling out, to the irritation of the people waiting for my spot. I'm very happy to be home and horizontal again. What an ordeal!

On a lighter note, today it is only six days until TLOML arrives for her first visit. Things have been progressing very nicely on that front. I still feel a little strange using her name and I'm not sure how comfortable I will be whispering "Displaced" to her in a tender moment, the idea of beginning a relationship with someone who has my name is kind of odd. My friend The Mathematician calculated the odds of two people with our specific name becoming a couple and it came out to around one in a billion (based on name stats and population of the US, and a presumption of % of lesbians, and the eye of a frog and the hair of a stegosaurus, add water and stir). It is entirely possible that we may actually be the ONLY couple in the world who share our particular name, which is really pretty cool I think!

It's no secret I am besotted! I must say I have been getting a little anxious about our first meeting, the idea of my mental image of her combining with my memories of her from school and amalgamating into the reality of her live and in person sitting in my passenger seat is VERY exciting and a little frightening too! Still, this experience is the best thing that has swum into my ken (to borrow from Keats) in many long and miserable years and win, lose, or draw I am grateful for every moment.

Rest assured - I will keep you posted!

Pain Clinic Update

2011-12-06T22:08:00.001-08:00

Well, today was the day... I couldn't sleep and woke very early after probably 4 hours of broken sleep. I was very early to the appointment but it did mean I got a great parking spot! (I always say I will never win the lottery because I use up all my luck on finding parking spots!) The hospital is huge and it was still a very long walk through to the clinic (I wonder why they don't have moving footways like the airport?).

First I saw a psychologist and answered about 4,672, no hang on it was 4,676, questions. Next I was meant to see a physiotherapist but the physio was off sick so I ended up with a wait of about an hour and a half before seeing the doctor. I didn't have to exaggerate the pain today, though it was still a pretty good day by and large, all the sitting around was really starting to take a toll by the time I got in to see the doctor.

The doctor was young and very muscular, he was also very understanding and quite irritated by his pager that went off at least 6 times in the hour I spent with him. He was very sweet doing a trigger point examination; he apologized each time I squealed and had to be scraped off the ceiling. He diagnosed me with... wait for it... I hope you are on the edge of your seats...

Fibromyalgia!

Well that was a huge surprise, not the diagnosis I have known that for ages - a medical facility where they believe in FMS!

He has decided to put me back on Lyrica, which did nothing for me in the four and a half months I took it in the US. Who knows, though, the dose might be different, I might respond differently. He is also putting in an order for me to go into hydrotherapy which I think might be terrific except that there is not going to be an opening until next year and ... well... with the developments in my personal life I may well be in a completely different part of the country by the time they get me scheduled in.

The Lyrica is not covered by the government pharmaceutical benefits program but because I got the script filled at the hospital they only charged me the benefits rate which is pretty cool! It also means that I will have to get to the hospital pharmacy at least once a month which is rather inconvenient. Not that I mind if the damn thing is helping!!! I did get the script filled but I have decided not to start taking it until I see Professor McCool on Monday. I just feel like I trust him more to make sure there are not any harmful interactions with the other stuff he has me taking.

By the time I got back to the car I was really dragging pretty badly and I was in a lot of pain. Straight home to the blissful relief of being horizontal. I even had a nap - something I almost never do in the day time. I'm still feeling exhausted and pretty sore but that's it for appointments for this week. Back on the treadmill again with McCool on Monday and McLovely on Tuesday.

Where's the catch?

2011-12-04T21:41:00.001-08:00

Ok... hang on... let me check...

This is strange... I'm not sure how to respond to this... I don't know what to say...

I can't see anything about to slam into me at the moment...

Sssshhhhh... Keep this under your hat

Things are actually going well. (Pause for explosion.)

Ok before I float away on a cloud of euphoria I need to remember to grab my parachute.

Ten days until TLOML arrives from her tropical paradise, jetting into Sydney specially to see MOI!!! My mother always chastised me for wishing my life away when I said things like "I can't WAIT until she gets here!" But it feels like an eternity. Today I didn't have any appointments or any demands or plans so I have just hung out and done some reading and had a long bath.

On the health front I am actually feeling pretty good. My arms are still a little weak and the vertigo is still hanging around so I'm wobbly but pain is the most manageable it has been for a good few months.

You know how when you take your car to the mechanic and say "It makes a grinding sound every time I turn left" and the mechanic does a test drive and it won't make the noise? I suspect that might be going to happen to me on Wednesday. I will be off to the pain clinic with less pain than I have experienced in MONTHS!

Why can't they give people pills full of endorphins? Well I guess it is just a form of self created morphine. I'm sure that's what is making the difference. Talk about a drug of choice! It's interesting in all of the fitness training I did when I was younger (including going all the way through the boot camp at the Police Academy for 4 and 1/2 months) I NEVER once had an endorphin high! I have read that people with Fibromyalgia don't experience that, or was it the bloke in the video, the one from Stanford? Oh well somewhere in the last week or so I have read that FMS endurers don't get the "runners high"... THANK the Goddess/Universe/Herbert that I can get an endorphin high from falling in love!!!

I can't say I feel strong but I am experiencing less pain. I'm toying with the idea of doing something to sabotage myself before Wednesday so that I turn up there feeling as crappy as I normally do. Maybe a game of golf tomorrow if the weather clears? That knocked me out for a week last time I tried it! Ok I'm half kidding. I really am very grateful that I'm feeling OK at the moment. I've lost about 10 lbs in the last three weeks though it feels like more. When I moved back to Oz from the US I didn't bring all the smaller sized jeans that didn't fit me, I figured it was silly carrying things I couldn't wear. Now I really wish I had brought them 'cause I am stuck with all my big jeans. I think a little shopping expedition might be in order tomorrow though I would have to get a great deal cause I am trying not to spend money too. So many competing priorities, as per usual.

Please address all correspondence care of Cloud 9.

The Marriage Equality Rally

2011-12-02T19:49:00.001-08:00

You guys are going to start thinking I am a professional protester!

I got the most wonderful parking spot, on the edge of Hyde Park, only maybe 100 metres from the rally stage. I was alone. Well alone with about five thousand people. This is the first time I have been to Hyde Park since I moved back to Oz three months ago and it was a beautiful day. I couldn't resist taking a few pics.

This is the Archibald Fountain and St Mary's Cathedral I just liked the way it was framed.

For some reason Apollo pointing at the spires of the cathedral appealed to my sense of the irreverent being that I was at a marriage equality rally.

The speakers were a little difficult to hear at times but the crowd was wonderful. I listened to a conversation between a mother and her little boy who looked to be under 3.

Boy "Why are all these people here?"

Mother "For a rally darling"

Boy "What's a rally?"

Mother "It's a way for people to gather and show everyone what they think"

Boy "What do these people think?"

Mother "The want everyone to be able to marry whoever they love."

Boy "I don't want to get married"

Mother "Well maybe one day you will and you might want to marry a man or you might want to marry a lady and these people want you to be able to choose."

I caught the mother's eye accidentally and we exchanged a smile.

The entire time I was there the thing I heard more than anything was people on their mobile phones trying to direct other people to where they were.

"I see you - keep walking and then turn right."....

"Are you walking towards the fountain or away from it?"....

"I'm to the north side of the stage"...

On and on this went. These people (most of whom were quite young) will never know the anxiety and irritation of searching for your friend in a big crowd, nor for that matter the excitement and pleasure of finding them! Technology giveth and taketh away.

The speakers led the crowd in a selection of chants that would be used during the march.

"Gay straight black white - marriage is a civil right"

"Julia Gillard ALP - we demand equality"

It wasn't too long, maybe an hour, before the crowd headed off down Market St on the way to Darling Harbour to where the Australian Labor Party was having it's National Conference. I decided not to walk along, I was a bit wobbly and it seemed a little far for me, I also would have had to come back to the car. This is one of those times when it would be handy to have a scooter. I followed in the car for a while taking note that all four of the mounted police were women (not the horsemen of the Apocalypse SotA girls!)

The four mounted police women at the back of the march.

I kind of tried to get down to Darling Harbour to meet the march at the end point but it turned out to be virtually impossible with the terrible traffic and the lack of parking. By then I was feeling a bit pooped too so I headed for home.

I really wish TLOML had been here to go with me. It would have been a lot more fun if I was sharing it. This blog will have to suffice.

Marriage Equality...

2011-12-02T01:15:00.001-08:00

There is a lot going on in Australia at the moment around the issues of same sex marriages and civil unions.

This rally is taking place tomorrow and I am considering attending (depending on how I feel and what else comes up between now and then). The Queensland Premier, Anna Bligh, has weighed into the fray and is pushing for endorsement at the Australian Labor Party National Conference (where the march ends tomorrow). Ms Bligh and her party enjoyed a success on Wednesday when Queensland passed a civil unions bill. The Prime Minister, Julia Gillard, clearly supported homosexual rights at some point as this image from her university days proves.

Personally, I don't know if I am really the marrying type but it does get me to thinking of how my life might be different if same sex marriages were legal and binding a couple of decades ago. Now remember I have been an out and proud lesbian for close to thirty years. So which of my partners would I have married? How many divorces would I have under my belt by now? Will I ever want to take advantage of this step towards equality in the future?

I'm pretty certain that I would have married at least once and possibly twice previously. I might have married my long term partner, the one with whom I had The Boy but I'm not sure of that one... we were both pretty laid back and neither of us seemed to feel the need of a formal commitment. I would definitely have married her if she had a strong desire to do so. We were together for ten years. On the issue of lesbians marrying and raising children I wanted to draw your attention to this wonderful video. The articulate young man in this video would be a credit to any family.

Young Man Petitions Iowa

The person I would definitely have married is my disastrous first American partner, I will call her Lucrezia (Borgia). Possibly the worst relationship in my life, and definitely the most destructive and damaging, I can remember clearly a desperate desire to cement that union. My life would have been very different if we had been permitted to marry. The formal process of "Divorce" would have protected me from much of the damage caused by our separation. That's a really long story that I am not going to tell, but believe me I was royally screwed by the US Court system exactly because there was only civil litigation, and no divorce procedure, to resolve the dissolution of our partnership.

So I guess it is feasible that I would by now be twice divorced - that is not a pretty thought.

The only time I ever did have any kind of commitment ceremony was not with either of these women. It was with my lover before either of these and it was a terrific party! Her friend, dressed as the Pope, pronounced us wife and wife "by the authority of the lady at the fancy dress shop". We were genuinely expressing our love for each other but we were also looking for a good excuse for a party. If it had been a real marriage, legal and binding, I actually don't think we would have done it.

TLOML and I have already talked about marriage. It started with a text from me saying, "If we get married I am NOT going to take your name. I'm sorry but I draw the line at that." (Remember we both have the same rather unusual christian name.) She quickly replied, "That's ok because I am more than happy to take yours". I went on to suggest that it would be very difficult to sort the mail and she parried that we could hyphenate in reverse order. Clearly we are kidding around... at least mostly...

So here in this age of acceptance, this day of imminent same sex nuptials, I find that as much as I support the cause, as much as I believe in the principle and the necessity of complete equality, I personally am unlikely to take that step. I don't need a piece of paper to validate my love and commitment. I don't need external acknowledgement. In some ways I would really rather keep the government out of my personal life as much as possible. That said, if TLOML really wants it - count me in!

Why I write

2011-11-30T16:48:00.001-08:00

This blog is being written for the PFAM Blog Carnival hosted this month at Bed, Body and Beyond.

Writers write.

I don't always refer to myself as a writer because I have had long periods in my life when I was not writing. At the moment I am most definitely a writer.

When I think back over the times I have identified as a writer a few moments stand out. Back in the early 1990's I was reading a bunch of lesbian detective novels, read toss, read toss, read toss... I was burning through them. Then one day I just thought, "I could write a better book than this!" So I sat down and wrote a novel. It was never published, I didn't really try, the act of completing it was the reward. Then I went back to school and got a degree in Administrative Leadership and one of my professors chose to publish two of my academic papers in his course books for the following two years. I clearly remember sitting in the heat dressed in cap and gown and the young man beside me saying he had read my papers and he said "How do you make it all make sense? Are you a writer or something?" His question brought me up short and made me think.

Am I a writer? I had taken for granted, up til then, the ability I have to express cohesively in this written word form. That was the beginning of my awakening as regards writing. That was the moment when I began to realize that not everyone can do this. Since that time I have written millions of words. Another novel (unpublished by choice), a business book (published), hundreds of short articles for various outlets, countless presentations, seminars, speeches, and masses of marketing materials (I rather like alliteration!). Gradually I have come to realize just how fortunate I am to have this gift. I take praise of my writing with grace but also with rebuttal as I really think it is a gift and I have only made a minuscule effort to refine it. I'm just lucky. I can write anything (except songs which always turn out so corny that I embarrass myself!), technical writing, creative writing, short, long, fact, fiction, academic, irreverent, poetry, prose -- pretty much anything I want to do. I'm just very lucky.

So why do I write? I write because I can. I write because it helps me to clarify my thoughts. I am a verbal processor. My ideas and thoughts coalesce as I express them and for me writing is a verbal communication in that I write the way I talk. People who know me who have read any of my books tell me that they feel I am sitting beside them reading aloud - my voice is very evident.

I write to process, I write to share, I write to soothe myself, I write to make myself smile, I write to show my love, I write to reveal my heart, I write to enlighten, I write to pass the time, I write to analyze. Most of all I write because I can, because I was given a gift that I have not earned and I think it would be neglectful of me to squander it.

Gonna Eat Worms hits the big 50

2011-11-29T22:54:00.001-08:00

Well well well... my 50th post. How things have changed in the short time I have been writing this blog... and then how they haven't...

I have had a weird day today with some very strange sensations going on. My arms are still feeling very weak from the exertion last Friday night which is a little worrisome, I feel like I need something to support my wrists and to be honest if the keyboard became difficult for me I would totally freak out!!! The fatigue has eased a little in general and it was quite a good day pain wise too but OMG the damn vertigo has picked up.

The Boy and I went to lunch together and then wandered slowly through a department store trying to find an inexpensive (but very classy) gift for his boy friend. My poor darling I was having regular head spins and he had to keep waiting for me or worse yet I would put my hand on his shoulder for balance! "Why do you keep touching me?" he grumbled (as only an 18 year old can), though he shouldn't be surprised I have been using his shoulder for balance up and down stairs for years! I'm a bit scared of stairs.

Today I have had strange skin sensations all day. This morning there were invisible bugs walking all over my legs. I kept slapping at them but I knew they weren't there. I feel like I have the DTs except that I haven't had a drink in over a week! Not that I drink much ever really. So the imaginary bugs were replaced by patches of burning skin and then in interesting combination of creepy crawlies and burning patches. Shit, this stuff is fun! Something new and different nearly every day... well mum always said "Variety is the spice of life".

Gonna Eat Worms has turned out to be a variety laced blog, everything from philosophy, to family dysfunction, to medical news, to politics, to developments in my love life! I find this act of clarifying my thoughts into readable bite sized pieces very therapeutic. I also have really benefited from the comments people make here. My little band of followers has grown from just two personal friends to 18 in total and perhaps a few more who read but don't follow. I'm very grateful to you guys who bother to read this and I am amazed by the warmth and compassion I have been shown. I really feel that this little open diary has given me new friends and the broadest of global horizons.

Thank you to everyone who reads this.

The Universe at work...

2011-11-28T15:40:00.001-08:00

It's a strange thing this Universe... You can call it God or Allah or Buddha or Herbert for all I care... I tend to call anything that seems to have greater power than we mere mortals "The Universe". Back in mid October I wrote about the kind of pessimistic optimist I can be and then showing my inconsistency only a few days later I sent some wishes out into The Universe . I was wishing for the woman of my dreams to come into my life. Again on 11/11/11 I posted a blog with a wish list which included the wish "to love and to be loved in return".

There have been some times in my life when I have been 100% certain that forces were at work that were bigger and more powerful than anything a human can cause. Once this was a "Universe" bitch slap designed to make me pay attention, another time it was a serendipitous moment of stark perfection. To be honest I often think I am getting messages and that I am too dumb to acknowledge them until it becomes REALLY obvious and then I think "Duh. Of course!"

For quite some time there have been things going on that have brought someone I used to know into the front of my mind. I have been calling her The New Connection in this blog for a while now, but I think I need to change her tagline... More on that later though...

I'm not sure how I came to find her on facebook about a year ago but she accepted my friend request. We didn't message or anything... maybe I said hi on her wall... I NEVER saw her online and I am online a LOT. Then I moved home to Australia and started reconnecting with old friends including The Best Friend who of course knew The New Connection from when we were all in high school together... so naturally her name came up... Then a somewhat strange thing happened when I got a facebook friend suggestion for a young boy who shares her last name and it said we had two mutual friends, her nephew is in the same school class as The Horsewoman's daughter (who I live with). She just seemed to be "front of mind" far more than at any other time.

I'm sure you know that facebook tells you when people have a birthday and I received notification of hers. So I left a birthday message on her wall. Later that day, for the first time ever, I saw her come online. I vacillated between wanting to say hello and not wanting to intrude. I even started writing and stopped before starting again... Then I thought "Oh what the hell I'll just say a quick happy birthday". This was the day after I wrote my 11/11/11 wish list.

Things suddenly stopped being normal. I am really quite certain that at that moment something enormous dropped into place. Giant gears in the machinery of my life meshed. Jigsaw puzzle pieces fell into place. The erratic became calm. The poles were reversed. Life changed.

When I look back over my adult life, all the time that The New Connection and I were not connected, I can see that I have had two really good chances at finding/making happiness. The first was my first serious love, a really wonderful woman with whom I was incredibly compatible, but I was very young and too damn scattered and stupid to know a good thing when I saw it and I screwed it up. About seven years after that I began a relationship that was to last almost ten years. That relationship was very comfortable but it stagnated and we grew in different directions, I had wild oats to sow and adventures that still needed to take place. I loved and still love both of these beautiful women and I have had the pleasure of seeing them both since I came home.

As little as three weeks ago I genuinely believed that I would never have another chance to find that kind of relationship. Then IT happened. We started talking and we haven't stopped. First on chat, then text, and then on the phone. At other times in my life when I have had relationships develop online I have always had that niggling doubt, that wondering if ... well if she has two heads, if she is a lunatic (she often was), if she has more than one personality and I'm only seeing Dr Jekyll while Ms Hyde lurks in the shadows waiting to take over as soon as I have made some kind of commitment! There are no niggling doubts this time. I know her, even though we have not seen each other since we were girls, I still know her.

It's interesting, I think, that when you are just emerging from school into your adult life you are in some ways a clean slate. I know that most of us carry some scars from our childhoods but I kind of mean that we are our real selves. Then we embark on life and the battles and experiences we have shape us in a variety of ways. Yet somehow when you reach a certain point in your life you stop playing other people's games and you begin to shed the elements of your personality that were assumed or adopted to please others. You distill down to a more raw version of yourself with an attitude of "here I am - like it or lump it". In some strange way I think we are again more truly living as our authentic selves than we have since childhood.

So here it is, The New Connection. We are both happy alone and neither of us needs another person to complete us - and yet we are irresistibly drawn towards each other. We both have an overwhelming sense that this is "right" that we "belong together". Against the caution of our friends, and ourselves for that matter, we have both decided to just enjoy this experience and let it play out however it is meant to play out. We have agreed that the worst that can come of this is a really lovely friendship. We have agreed to take the responsibility for our own emotions in the event that something causes this to take a different path. We have agreed that regardless of what happens we will love each other for this time if for nothing else. We're big girls all grown up and able to handle it if something goes amiss. We're big girls falling in love.

Soooo... From now on The New Connection is going to be known as TLOML. My mother always said (in reference to trying to achieve something) "Punt high and follow on!" (I think it is a football metaphor LOL) So here is my high punt. The New Connection - The Love of My Life. (And if I turn out to be wrong you can all tell me I'm a hopeless romantic and, as Rodgers and Hammerstein would say, a cockeyed optimist.)

And now over to Displaced on the Health Check Desk

2011-11-28T01:47:00.001-08:00

Well it was a beautiful day in Sydney to visit the Immunologist Professor McCool. Good news on most fronts with several nasty conditions being ruled out. Prediabetes was confirmed with findings of both high glucose and high insulin so dietary changes are in the cards for Displaced. Hashimoto's reconfirmed (but with lower levels of antibodies which is interesting). I also tested positive for Gastric Parietal Antibodies which can be associated with atrophic gastritis and with a B 12 deficiency (but my B 12 levels were ok). (I thought there were only two Bananas in Pajamas, B1 and B2, -- who the hell knew they were up to twelve!!!)

Unfortunately the radiographers had not yet made the MRI report available but Cool McCool had a glance through the hard copies of the scans and said he couldn't see anything that wasn't meant to be there. The thing in my brain that looked like a bobby pin was pronounced to be a flaw in the film not a miracle worthy of a Lifetime movie.

Off I staggered to the pathology department to have more bloods taken, only seven vials this time, among the things that are being tested for is Myasthenia Gravis (an auto immune condition meaning muscle weakness) and heaven only knows what else he is looking for.

I'm feeling ok about the results except for the prediabetes. The best thing I can do for that is to exercise more but my muscles are so badly reactive to exercise at the moment I don't know how I am going to do that. I got a pretty severe lecture from The Horsewoman about starting to change my diet and my activity level. I'm still experiencing muscle weakness and pain on use from my activity on Friday night. My arms are still super sore. Otherwise a pretty good day!

Emotion cocktail

2011-11-27T05:36:00.001-08:00

Two shots of apprehension
One shot of exhaustion
Combine with three shots of wowee!

= Displaced ... shaken not stirred!

Tomorrow is now today and I see McCool for the results... I'm feeling good and hopeful I don't think he is going to find anything super scary and maybe he will find nothing at all.

My arms are still paying me back for helping on Friday night at the Shabbat Dinner (which was to raise money for the campaign to stop violence against women which I consider a VERY worthy cause)

The New Connection is growing and thrilling me with hope and potential. I am surfing on a wave or amazement that a woman as lovely as she could possibly be interested in moi! It's getting quite serious quite quickly (if you can call hours of laughter on the phone serious and knowing each other for 33 years quick). If you recall I have been making my wish for her on these pages for a while now... This might just be THE ONE.

Well done Universe!!! Good Job!

Inspiration

2011-11-26T03:23:00.001-08:00

I am writing this for the November Disability Blog Carnival and the question posed relates to inspiration...

"Inspiration" and worse yet "inspirational" are annoying trigger words for me especially when used in the media. It always makes me feel that it is in some way belittling those of us who are not climbing Everest or running across Europe.

Many years ago, long before I had any inkling of myself as a person with a disability, I was doing some research into spinal cord injuries and I read and learned an enormous amount. In the course of these inquiries I came to meet two women with SCI's. One fit the complete definition of "Inspirational" she had quite a high level of injury and yet was an Olympic athlete. She juggled a high-powered career with public appearances and published writing. Yet when I spoke with her and interviewed her I found her comments a bit snarky, I might go so far as to say that she had tickets on herself and she made rather derogatory comments about the second woman I met. Comments to the effect of "If I had her level of injury I would be doing so much more than she is!" The second woman was gentle and kind. She was open about dealing with the breakup of her marriage, she worked in a capacity that enabled her to help others who were newly paralyzed. Her quiet determination to rebuild her life and her empathetic kindness touched me very deeply.

So who was inspiring?

NOT the achievement driven superstar, that's for sure!

Inspiration is a factor that is completely subjective. The media may well attempt to dictate to us who is and who is not inspirational but the fact of the matter is that nothing is inspirational unless it actually causes an effective change in the way of thinking or the actions of the person who is inspired... ergo one must be inspired to DO or to THINK something as a result of your contact with the source of inspiration.

I find that I am most inspired by those who quietly get on with their lives, who make the best of bad situations, who give what they have to give regardless of how much or how little it may be. These people are rarely found in two page spreads in magazines or in the "human interest" segments of "news" programs, some of them may never leave their bedrooms but they are reaching out and giving in the ways they can, with love and warmth and humour.

I am inspired by many of my blogging friends, their quiet determination, their humour in adversity - most especially those who continue to give to others and to agitate for our rights as disabled people and as humans while still battling with their own problems.

"Inspiration" - overworked, overused, inappropriately applied far too often, bandied about with abandon and yet... the underlying meaning is still so significant and important. I find the quiet dignity of ordinary people who are dealing gracefully with extraordinary difficulties to be my inspiration.

Is you is, or is you ain't depressed?

2011-11-24T20:47:00.001-08:00

Yesterday I had a bit of an argument with the psychologist I have been seeing,

She thinks that I'm depressed and I don't think that I am any more depressed than any intelligent person would be in my situation. There's a lot of stuff going on in my life at the moment that is cause for concern. Problems with housing, money, the government, oh and let's not forget the stress and uncertainty associated with my health. There would be something wrong with me if I were vivacious, bright, bubbly and effervescent all the time! Quite frankly, if you take your car to the mechanic and you tell him what is wrong with it, is he or she very likely to turn around and tell you you sound like you hate your car? Of course when I am at the psychologist I talk about the things that are bothering me! I have been depressed, I've been down in the blackest parts of my soul. Hell, I've hung out down there and had a good look around; stirred up the demons. I know what depression feels like and this isn't it!

Perhaps I should be aiming to give a more fair and balanced account of my state of mind? Maybe then people would stop asking me if I am thinking about hurting myself? (This was asked at least 5 times last week which I must confess was a rather low week for me.) More to the point I am concerned that if the medical professionals who are handling my case start to focus on the idea that I am depressed the next thing they will be saying is that the pain and fatigue (and all their nasty little friends) are all caused by depression and THAT is quite simply NOT the, case. This pain has followed me, to a greater or lesser extent, through all kinds of emotions, through great highs and horrible lows, through hopeful excitement and abject misery.

Sooooooooo in view of the fact that it has been Thanksgiving in the US, the first Thanksgiving I have missed in a dozen years I am going to talk about some of the things that I am hopeful and excited about.

I'm eagerly anticipating going back to University next year. I see it as an opportunity to retrain into an area where I might be able to get high paying part-time work that I could participate in regardless of the effect of fibromyalgia (or whatever the hell this is). I also see University as an opportunity for me to shine and to increase my pretty low self-esteem. I have always done well in the past and I hope to do well again. Furthermore it is an opportunity to meet bright, interesting people and to expand my social circle.
I have been spending time with The Boy who is now looking at staying in Sydney and perhaps not moving to the UK for a while. He makes me feel happy and proud and we are close and getting along well (complete with our usual bickering).
I have rediscovered many of my old friends and I have been spending time with them and I have been feeling appreciated and cared for. The Best Friend is like a shining beacon of warmth and support and makes me laugh hysterically every time we meet!
The Reader is angling to get me some copy writing work which would be something I could comfortably do while lying down (which I spend 80% of my life doing). This would help with my financial woes, and perhaps even my housing problems.
Then, out of the blue, there is The New Connection with an old friend that seems to be blossoming into something tender and beautiful. There is even a tiny little voice inside me that is asking ...? well... I'll pause that thought for now. However she is coming to visit Sydney soon and I am very much looking forward to spending time with her when she is here.
I have been seeing a really AWESOME group of doctors. Dr McLovely is caring. helpful, compassionate and kind and Professor McCool is uber cool and is leaving no stone unturned. While his investigations are hanging over me a bit at the moment I am definitely more hopeful than fearful.
Today I had a telephone interview for a part-time job. The good news is that it will not be until next year which gives me some time to resolve all the issues that are holding me back at the moment. Hopefully by then I will also be feeling better and stronger and I'll be able to work this around my University studies.

Yesterday I had an MRI (ordered by McCool) so no more calling me brainless, ok? I do have a brain I have a picture to prove it! I will be seeing McCool on Monday afternoon and although I am frightened of some of the possibilities (and of him finding nothing) I am also excited and hopeful that there might be something that can be treated. Naturally this is hanging over me to some extent... but I am honestly more hopeful than trepiditious.

Anxiety, I will cop to, I do have issues with anxiety and stress is a huge trigger for me, but depression? Not at the moment!

Women Say Something

2011-11-23T04:45:00.001-08:00

Tonight I attended an event.

Long ago, back before cell phones and personal computers, before MASH stopped running, before I even knew what the words meant, I referred to myself as a Marxist Feminist Lesbian - at the time I was none of the three.

Time passed and I totally embraced one of the labels, held firm to the principles of another, and modified the third. I grew to become a Socialist Feminist Lesbian. I was never a separatist (though I have dear friends who were) but I understood where they were coming from and I marched for women's rights and listened to good solid lesbian lefty folk singers.

Somewhere in the late1980's and 1990's the wheels seem to have fallen off the women's movement, even the separatists mostly came down out of the hills and "played the game" and worked for "the man". Of course I was swept along just like everyone else... Settled down, had a baby, stuck at a real job, bought a house... But it was never far beneath the surface. Even when I moved to the US in 99/2000, even in the US, where when you say the word "socialist" lots of people hear the word "Stalin", I kept saying it.

Dammit I am a SOCIALIST and I am a FEMINIST and I am still (although not practicing LOL) a LESBIAN!

Sooooooooo by way of Twitter and Facebook I accidentally head about this event so I spent the afternoon resting and I went!

Oh my goodness - when did lesbians and feminists get so young? Yikes!

There were two panels, the first focused mainly on inclusion and talked a lot about bullying in schools. The second looked at feminism and (this is my takeaway so forgive me if it is not what anyone else got from the discussion) it talked about the future of feminism and if the word feminism can be revived/reclaimed/revitalized. A couple of times the word humanism was brought up as a possible replacement. At one point during the first discussion one of the panelists mentioned that dropping the words "Gay and Lesbian" from the front of the words Mardi Gras for the giant celebration held in Sydney ever Feb/March was an example of us (the queer community) showing the world that we are more inclusive than "they" are. I wonder if the word "humanism" were to be applied would it be considered the same way? Or have we become so inclusive that we no longer have an identity? Personally I think that if the feminist movement was no longer identified as relating to women it would have no validity and no reason to exist. One of the panelists insisted that she would always refer to herself as a feminist and that failing to do so would be disrespectful to all the women who have fought for the "equality" we have today (such as it is) and I agree.

There was an older woman on the second panel (one of the few people I saw who was most likely older than me!!!) and she suggested that we are bogged down in viewing the world from an economic (ie male dominated/goal focused/financial) point of view and that we need to move back to a focus on society. She said there needed to be a collective movement towards societal change. At this point one of the other panelists mentioned the Occupy movement and no one really pointed out that Occupy is totally an economic focused movement, its very core is an opposition to corporate greed and a desire for a more equitable distribution of wealth.

This evolved into a discussion of how factional in fighting and issue arguments are disrupting the ability of women/feminists to organize. One of the other panelists, a very interesting woman who is the secretary of a major trade union made a very interesting point... She said that no one has more in fighting than the unions but that when Australia was under the conservative Prime Minister John Howard they managed to put aside their differences and unite against the common enemy.

This to me is the crux of the issue.... The common enemy, the overarching goal, the fundamental principles - they must be grave enough and significant enough to unite us and to compel us to act.

On the way home I was singing this song to myself in the car...

Judy Small singing about the amazing Jessie Street.

Folksingers like Judy Small, Alix Dobkin, Cris Williamson, Maggie Kirkpatrick, and other lesbian artists like Robyn Archer taught us our women's history and reinforced our social consciences. Who are the young women of today learning from? I mean I really like Beyonce (The Boy would kill me if I said anything else) and Irreplaceable (to the left to the left) is a very empowering song but it's hardly educational.

God help us if it's Katy Perry!

Protecting me or protecting them?

2011-11-22T01:45:00.001-08:00

I'm wondering if it is just part of the human condition or if perhaps it is part of the Australian cultural identity or if maybe it is just me...

I just saw a facebook friend suggestion to connect with my first cousin once removed (my cousin's son) and it made me immediately think that I would really like to touch base with my cousin who I will call Sugar Plum (not because it describes her in any way but simply because it was part of a rhyme that my mother used to say in reference to her). When I first came home to Australia she was one of the first people I wanted to connect with but then my Gay Brother told me she was going for a month long trip overseas so I let it go... Now I know she would be back but for some reason I am hesitating to reach out to her. She was one of my mother's "girls", one of a handful of people my mother loved above all others.

Sugar Plum is about 9 or 10 years older than me (she was the oldest surviving grandchild and I the youngest) so when we were kids, although our families spent quite a lot of time together, she and I were not really in the same generation and had only passing interactions. I thought she was brilliant and glamourous and I think she thought I was hyper and annoying. By the time I grew into adulthood she had a husband and three rambunctious boys and I was off trying new things and spreading my wings.

The 1990's saw a string of horrible losses in her family. First her younger brother died of cancer and then her father, my beloved uncle (after whom I named The Boy) died and then her mother, my irrepressible aunt, died as much of a broken heart as of the colon cancer she had fought for so many years. My mother was by then the closest thing to a parent she had and I was happy to share her. Sugar Plum was the only person other than myself and my two brothers who we told when mum was dying in 2008. She made the trek up the coast to see mum one last time and on my way back to the US that trip, after mum died, I spent a night in her house and an evening laughing and crying together. It might have been the first and only time we were alone as two adult women.

I love my cousin, there's no doubt of that, but I don't want to burden her with my problems. I think it is human nature to want to solve the problems of others... As a side note I think that's why so many people are always making suggestions and recommendations to those of us who have chronic illnesses. I am wondering if my reluctance to get in touch is about trying to protect her from wanting to help me or if it is about protecting myself in some way. Time passes and it gets harder and harder to make that initial contact.

Back when I first got really sick with FMS, or whatever the hell they decide this condition is, I retreated. At that time I was living in the US and the people I withdrew from were my friends. I didn't want to talk about it, I didn't want to be a giant misery guts whining about how shitty I felt. I felt, in many ways as I feel today; I feel like I have nothing positive to offer, nothing to bring to the table. My health isn't my only problem at the moment (as if it wasn't enough), I'm really broke cause I can't work and I am living on a small government benefit. I can't go on staying where I am staying for much longer, and though my wonderful friend with whom I am staying won't throw me to the wolves I know that I am overstaying my welcome and that stresses me out. So back to the default setting I go - I retreat.

When I get really down and out, when reaching out to others would help, I do the opposite and pull away. I'm really lucky that there are a few people who listen and understand and don't seem to consider me to be too much of a burden so I'm not in complete retreat. I'm seeing The Best Friend several times a week and that's wonderful, and I had lunch yesterday with The Reader and that was great.... There are others who are there for me in wonderful ways, thank goodness. But I am feeling very uncomfortable about calling my cousin, I don't know if I am up to starting from scratch to explain all this to someone else and yet she is my closest living female relative and I am hers. We share a huge pool of people we have loved and lost and we are in many ways the only remnants of my mother's family.

So, should I call Sugar Plum?

Lost in Limbo...

2011-11-21T02:50:00.001-08:00

I am writing this for the PFAM which is hosted this month by FibroDAZE, Kathy over there is asking about how we cope with new diagnosis.

===

Right at the moment I am in a place of great uncertainty and I'm picking my way through a minefield of doctors appointments. One of the reasons why there is so much happening at the moment is that my health was sorely neglected when I was in the US. I didn't have any health insurance for my last year there and so I was just muddling on alone.

When I returned to Australia, where, thank the Goddess, we have universal health care I was able to begin to get some of my health issues taken care of (I hoped)... In actual fact so far, in the two and a half months since my return home, I have received a couple of different diagnoses.

Just a tiny bit of background - in 1994 I was incorrectly diagnosed with Osteoarthritis and basically told "welcome to middle age". Then followed several years of dancing with various anti-inflammatory drugs all of which caused strange and unpleasant events (like serious depression and hives) until the doctor finally became concerned that my allergy to NSAIDS was going to result in anaphylactic shock if I kept taking the NSAIDS with an anti-histamine chaser. I then resigned myself to living with constant pain with only over the counter paracetamol/acetaminophen to help. This went on, interrupted by occasional doses of Vicodin, Percoset and Lortab, until 2009 when I was finally diagnosed with Fibromyalgia.

Back here in Australia I have now started to nail down some of the more specific either parallel or contributing conditions. First the Rheumatologist (Professor McAwefullyCute) informed me that I have "An undampened stress response resulting in widespread chronic pain" That's all well and good but it doesn't account for all the other problems that plague me... Next came a brand new diagnosis of Hashimoto's Thyroiditis, diagnosed by the Endocrinologist, and the probability that there is another auto-immune disorder. So off to the Immunologist (Professor McCool) who took enough blood for testing to feed the entire cast of Twilight, and arranged for an MRI.

I feel very unstable about my diagnosis at the moment... I know that McCool is checking for some things that are very frightening like Paraneoplastic Syndrome - which could mean I have Cancer somewhere in my body that is undiagnosed. I have another week to wait before I hear the results of these tests. I know he's looking at Lupus, Addison's, MS, Sjogren's etc etc etc...

When you live with a diagnosis like Fibromyalgia it kind of places you in a difficult position, Because it is a diagnosis of exclusion and to be honest I don't think my doctors in the US really did enough testing to have positively excluded this range of other auto-immune conditions. This places me on the horns of a rather interesting dilemma...

Do I want these tests to find anything?

Anyone who has lived for a long time not knowing why they feel crappy all the time, why they hurt all the time, why they are so tired that shampooing their hair knocks them out for an hour, will know what I mean... There is a part of me that desperately wants to know what is causing all this pain! But I don't want to hear terrifying news that my own body is attacking my brain or that I have Cancer. I would love a new diagnosis if it was something that could be managed... hell I might even get better!

The Hashimoto's diagnosis was good news... something that can be managed reasonably well with non-invasive synthetic hormone pills... easy... I might even feel better than I feel at the moment when the thyroid pills start to take effect... On the down side I am very cognizant that one auto-immune condition frequently leads the way for one or more others.

I guess, in my roundabout way I am trying to say this... A new diagnosis can be a thing of beauty, it can take you from despair to hope in the blink of an eye! It can also be a frightening slap across the face with your mortality.

One week from today I will know much more - until then - welcome to my limbo land.

A Mahrvelous Pahrty!

2011-11-19T05:18:00.001-08:00

"Quite for no reason, I'm here for the season and high as a kite,
Living in error with Maude at Cap Ferat which couldn't be right
Everyone's here and frightfully gay, nobody cares what people say
Though the Riviera is really much queerer than Rome at its height
Yesterday night.... I went to a MAH-VEL-OUS party!" [Noel Coward]

It was tonight, it was not the Riviera, I don't think anyone was gay (except me) but it was a marvelous party!

This evening I attended a soiree at the home of The Actress and her husband The Percussionist. What a wonderful night. The Percussionist's band played - they are absolutely awesome and I am verging on being their groupie! One of the premier Australian female jazz singers of our time performed which was such a surprise and an honour. Fabulous people, excellent food and brilliant entertainment. I had a wonderful time!

I managed to catch up with The Scientist a bit, which was nice, and I had some fantastic conversations with a couple of other women I met there. The Boy was going to come but piked out on me fearing he would be the only person in his age group there... He was wrong there were lots of young people, in fact I think the guests ranged from about 2 to in their 70's.

I seem to be getting used to the new meds because my brain has kind of started to work again... I'm thinking about things again after a few days of feeling like the living dead. Today I spent most of the day in bed, still feeling groggy so I was well rested but I know I will pay tomorrow.

It was worth it!

Homeward bound, I wish I were...

2011-11-17T20:03:00.001-08:00

The new med I'm taking has made me even more exhausted than usual and perhaps it is also making me depressed... It wouldn't be the first time an anti-depressant had a depressing effect on me. Wellbutrin made me cry all the time... I'm at the point (having taken it 3 times) where I am wondering if I should tell Professor McCool that it is having a negative impact. Being 3pm on a Friday afternoon I really need to make my mind up.

Today I received two almost identical emails both with the heading "Hello" both somewhat unexpected. One from my gay brother and the other from my step-sister. Both were inquiring if I am going to make it to Christmas. It must have been Check On Displaced Day. Hmmm. I mentioned this to both of them and my step-sister insists that it is pure coincidence.

Well, I just put in a quick call to McCool and after being routed to the wrong number 4 times I actually got his office where he personally answered the phone! He says to persevere and that the tiredness will pass in a week or so. He asked if I was suicidal. I've probably been asked that about 5 times this week. I'm not suicidal. I would never do that to my son. I couldn't leave him with that legacy. Although to be honest, other than him I sometimes wonder, 'what's the point?'

I do have a purpose though, at least for now... Shortly I am going to drag my sorry arse out of bed and go and pick up The Boy from the train station. Then I'm taking him back to The Best Friend's house and I'm going to hang out there for a while. She will make me laugh.

An interesting thing has been going on lately. I have reconnected with an old school friend (not one mentioned before) and we have been chatting online late in the evenings. I don't want to make too much of this but it seems for some reason, that is yet to be revealed, this connection is important to both of us. I actually think about our interaction during the day and even, dare I say it, look forward to our talks.
I wonder if there are people who are like the human equivalent of "comfort food"?
I pose this theory;-
We have a great deal in common (socio-economic background, very similar education, daughters of divorced houses, we have the same unusual name (girls called Displaced are pretty unusual), we are both lesbians, we are both single)
We shared a brief period of time when we were girls/young women (we sat next to each other in class, we belonged to the same school clubs)
We were both kind girls at a time when girls were often so horrible to each other.
We both hated the same teacher... and she hated us!
I wonder if we are comforting to each other in some way, like the smell of baking bread or apple pie might be if your granny had been a baker. My self esteem is so low at the moment I can't imagine that anyone would be interested in me in any way other than as a friend, I have so little to offer, so little to bring to the table...

So now I need to express my gratitude... The Boy, The Best Friend, The New Connection, The Reader, The Horsewoman, Dr McLovely, Professor McCool, you are all helping me get through this low period in my life and I am grateful for you all. I am also grateful for my online friends/readers/fellow bloggers - in particular my Fibro Sisters Jazz and Kathy and the coolest advocate of all Sarah... and never to be forgotten My Pseudo!

Trudging through treacle...

2011-11-15T23:24:00.001-08:00

I am calling it treacle but I resent the fact that treacle is a substance of which I am rather fond...

It might be better called tar or mud which are both unpleasant but which don't quite capture just how hard it is to make my body move today.

Even typing is hard and keeping my eyes open is even harder...but I feel like I need to spit something out there.

I think where I used to have exhaustING days now I have exhaustED days... far too frequently. My body feels a bit like it used to feel after a 200 metre sprint, only there hasn't been a sprint. I tried to describe the feeling to Professor McCool the other day and missed this metaphor unfortunately... I wonder if it means something that my muscles feel like I am in an anaerobic state?

I'm off the juice diet, McCool said to stop and I'm glad I did cause I didn't have even a single day while I was on it when I felt strong or energetic. Mind you I feel crappy still so maybe it wasn't the diet's fault. My fingernails liked the diet they seem healthier.

So night after night I have been waking and not being able to go back to sleep, little snatches of sleep just can't sustain anyone. Last night I took one of the anti-depressants McCool prescribed and I slept all almost all night and was like a zombie all day... I hope they don't continue to knock me out that much. I hate taking meds.

I'm such a cheap drunk!

Back in the day...

2011-11-15T18:13:00.001-08:00

A long time ago when I was just a baby dyke there were no positive lesbian role models.

I'm talking about before even Martina Navratilova came out. Before k.d.lang, before Melissa Etheridge, before Rosie O'Donnell, before ELLEN! It was no surprise that Martina Navratilova was having a relationship with Rita Mae Brown because after all they were, after all, the ONLY two lesbians on Earth!

I just read this story, unfortunately I can't find the author's byline...

Dallas Voice story re death of Barbara Grier

The author makes the point more eloquently than I can, what a difference organizations like Naiad Press made to young lesbians around the world. Barbara Grier and her partners were instrumental in making lesbian literature accessible to all of us. It saddens me that such an institution faded away with the retirement of Ms Grier and her partner Donna McBride and yet it is really a credit to them that it did.

It seems that there is an aspect of planned obsolescence in a movement like the 'Lesbian Movement' or the 'Women's Movement' and even in things like the 'Civil Rights' movement. If such a movement succeeds in it's primary objective, which in it's simplest form is full acceptance/integration, then the movement which fought so hard and so long becomes redundant. It is paradoxical that success begets failure, if not failure certainly the reduction of purpose.

There was a time, in my lifetime, when a statement like "I kissed a girl and I liked it" would have landed you in at least therapy, perhaps aversion therapy and in the worst case maybe even in a mental hospital. Those of us who thirsted and hungered for lesbian role models were saved by organizations like Naiad Press and by pioneers like Barbara Grier.

To Ms Grier, and others like her, all lesbians of today owe a debt of gratitude.

I salute you.

The Sophie's Choice of Illness...

2011-11-14T02:23:00.001-08:00

I had an interesting conversation with the Immunologist today. We were discussing the possible use of steroids to alleviate my pain.

He was a REALLY cool guy and I totally appreciated his direct, human approach especially when he said, after listening to my description of how I feel, "So you feel like shit?"
"YES!" I responded with more animation than my energy level appreciated. I was just so, bloody, excited to have a specialist (a professor no less) really listen.

Anyway, the steroid discussion... Now remember by now we have a rapport and I think he is shooting straight with me...

"Would you take ten years pain free if it meant that you would develop diabetes and die prematurely?"
"Ooooh, I'm not sure about that. I only recently lost a close friend to complications from diabetes and it was not pretty."
"I would. But that's just my personal opinion, it's an individual choice."

This is a conversation I could never in my weirdest, most intoxicated, most bad-acid-tripping dreams have imagined being a party to.

Fortunately for the moment it is a pre-conversation and I don't have to make that decision right now.

Tomorrow more bloods, The pathology request form is literally so full of things he is testing for that he wrote in the margins and in the space above and then drew a big circle around it to make sure they knew they were all tests, He chased (I use the term loosely because a greyhound really doesn't have to chase a snail) me out to the reception to add a few extras that had just occurred to him. Some of the things he is testing for are pretty scary and for now I really don't want to get too freaked out about things like brain-eating antibodies and cancer-companion-inmuno-oddities, so we'll just have to wait and see. He did seem pretty interested in Sjogren's. The good thing is he is looking and it could be good news if he found something and it could be good news if he didn't and it could be terrifying if he found some other thing and depressing if he finds nothing... so win/win - lose/lose who knows?

He is also sending me for an MRI of my brain - which no one has bothered to do before, I know there is a brain in there, I have a picture to prove it, because I had an ear infection they thought was eating into my brain back in 2007 and they did a CAT scan then.

I think I will call him Professor McCool 'cause he was really a pretty cool dude, I might start calling him HOUSE if he figures this out!...He spent an hour and fifteen minutes with me and I think that is pretty amazing, all on the government health care system.

Any of my US friends who think that Universal Health Care would give you a lower standard of care than the system you have now is Captain Rats (sorry, you are certifiable). In the USA I NEVER, even with full medical insurance, received this level of care or this degree of genuine inquiry AND in spite of paying huge amounts of money for coverage every paycheck I was still co-payed to death!!! Health care is a business in the US and a service here... the whole mindset is different! Not that it is perfect here, nothing is. But a public patient nobody, like me, can still get in to see the best and brightest in the country and that is really quite impressive.

(PS Just Kidding about the acid trips)

The Juice Diet Day 5

2011-11-13T14:18:00.001-08:00

Ok here is the announcement... I am going to discontinue this diet after 7 days unless I start to feel substantially better. I feel like crap, I have felt like crap the whole time, and in addition to the normal crappy feeling I am having to do all this crappy stuff to make the juice (which is quite yummy usually once I get it done)

So here I am reporting on yesterday (Day 5) with only today and tomorrow to go.

I'm going to see the immunologist this afternoon - clearly I won't have to explain that today is a good day, though not quite the worst I ever feel it is a good example of a bad (not BAAAAD) day.

Quite frankly I'm over it!

	Edna Everage Day	DAY 5
Constant Pain	Constant dull aches	Headache's gone! Body pain is unrelenting.
Pain Rating	5	6
Stabbing or Shooting Pain	Intermittent but many times a day – hips, knees, shoulders, back, neck – the usual suspects	My hips, knees and right shoulder featured prominently with a rather nasty cameo by my back.
Energy	Like I used to feel when I had a cold or the flu.	Still lousy
Skin	Irritation and itchiness usually when I try to relax	Not too bad (Yay!)
Plumbing	Varies	Fine
Forgetfulness	Intermittent	Average
Depression	A bit down	A bit down
Anxiety	Fluctuating at times high	Average (a couple of spikes)
Sleep	Restless, broken, some insomnia	Slept very heavily (woke hurting) for about 4 hours and then couldn't go back to sleep.
Restlessness	Limited ability to be still	Not too bad
Fumbling & Stumbling	Drop things, bump into things, catch feet on uneven surfaces & stumble	Quite bad, even watching my fingers I lost hold of something I was holding delicately.
Balance & Vertigo	Varied equilibrium issues with occasional vertigo	Poor balance a couple of mild head spins (needed to sit)
Hunger	Not usually	Too tired to bother eating it was a real drudge
Cheating	N/A	Nuts, olives and avocado and whole fruit instead of juiced.

The line between acceptance and giving up.

2011-11-12T17:26:00.001-08:00

I really wish I had answers for this...

Wow there are so many things I want to talk about in this post that I don't know where to begin. Perhaps with a story...

I once had a friend who was functioning in society fairly well but clearly had some difficulty maintaining a consistent approach to her life. Then she received her diagnosis and suddenly everything became worse. She began to embody and experience all the worst symptoms of her illness. Her attempts to lead a normal life fell by the wayside as she quite tangibly embraced her diagnosis. I am not judging her. I know it had always been hard.

Back in 2009 I received a diagnosis of Fibromyalgia and in view of my friend's experience I decided not to research FMS and not to read any kind of list of symptoms. I was vehemently opposed to "embracing the diagnosis". So instead of reading the symptoms I listed the things I was experiencing and then investigated to see if they were FMS related.
Pain - Check
Fatigue - Check
Vertigo - Check
Poor balance - Check
Digestion issues - Check
Skin sensitivities - Check
Strange over the top startle/shock response - no check?
Trouble Swallowing - no check?
Clumsiness - Check
I just didn't want to subliminally convince myself to develop more problems than I already had. I think this was probably a stupid approach but I was quite determined at the time.

Of course time passes, and things started to get worse, and I began to have to accept that I really couldn't ignore these problems. This led to me wanting to find my community and wanting to relate to other people who really understood what was going on. Those of you who know me personally know that I am a curious person and that I process and assimilate information very easily and really without trying. So naturally the idea that I could not be educated about FMS became even more ridiculous when I reached out to others.

Still, as I have mentioned elsewhere, I had some strange delusion that coming home to Australia would make everything better... somewhere in my mind I saw myself here (in Oz) as the same person I was who left here in 1999. I'm not.

Please note that this blog is the product of a crappy, exhausted, painful day. It isn't always like this and I don't always feel this bad.

I think my twisted idea of not learning so as not to embrace etc was just one form of denial, the whole 'healthy when I come home' thing was another... I also think that my body is demanding that I accept what's going on and I think I am starting to do that. (All this blogging helps BTW). But there is a side effect of acceptance.

When I accept that I need help, in any form, I can relax a little from the constant battle to either hide my problems or "tough it out" and I now wonder if that was what I was seeing in my friend all those years ago. Which makes me wonder if it is a good thing at all?

This morning I drove The Boy to the train station (he is off back up the coast to go to his school formal (the prom for my North American friends)) and I got out of the car and yelped in pain as my back reacted very badly to the change from being seated to standing. I waited a few moments for the worst of the pain to pass and for the rest of my body to acclimate to standing. Then carefully and tentatively I started to walk using my walking stick. By now The Boy was 30 feet away from the car on the way into the train station. He stopped and waited a bit and teased me about looking like an old grandma (not that I don't have many friends younger than I who have grand children) and then he asked me an interesting question. He asked if I use the cane so that people don't bump into me. It made me think about all the reasons I use the cane... sometimes... and I don't always use it... but it also made me think of the visual message that using it sends to others and the fact that it does have a supplementary benefit of making people steer clear. I don't cope well with being bumped, my balance is terrible, every contact with my body hurts, if I fall it is excruciating (and I do fall too often), and I have anxiety about people, so I have a HUGE personal space. The walking stick gives me more room and that is a good thing. But it also allows me to let my weakness show and that is something I have avoided doing for my entire life. Remember I was raised by a super stoic...

I guess I have rambled on long enough in this blog but I could go on for a long time yet if I let myself... I guess I am just wondering how closely giving up or giving in is related to acceptance...

I read a really interesting little book last year by Richard Bach, the bloke who wrote Jonathan Livingstone Seagull, it was called 'Illusions: The Adventures of a Reluctant Messiah' and it was non religiously spiritual, full of really amazing messages about life the universe and everything... not the kind of thing I usually read but it had, LITERALLY, thrown itself into my path, it turned up in my car with no known source. The salient point here is that the book began with a long 'hand written' list about The Master and a parable that related to creatures that lived on the bottom of a crystal river and clung to the rocks as the raging current ran over them until one creature released his/her grip on the bottom and was swept on by the current. This creature met other creatures whose lives were different and experienced adventures and growth that clinging to the river bottom could never have provided... It was a great read which unfortunately I left behind in the US. I am that creature. I have thrown myself on the mercy of the current.

In spite of this I am still struggling with these issues... Is letting your pain show because you are becoming more accepting tantamount to giving up the fight? How much of the fight was really about maintaining my identity as a healthy vital person? How much of the fight was really about my ego and about what other people think? How much of the fight was really about trying to cling to the bottom like all the other creatures?

The Juice Diet Day 4

2011-11-12T17:12:00.001-08:00

I feel like shit which may or may not be the fault of the bloody juice diet... I am not really succeeding with it completely, having fallen off the juicer two days in a row (due to loving friends wonderful home cooking!!!)

On Day 4 I felt so shitty I just didn't have the energy to cut it all up, build the juicer, shove it all in there, clean the juicer and then drink the sludgy concoction that was by then starting to separate. I grabbed an apple and made do with that until in the late afternoon when I drove around the corner to see The Best Friend. She is becoming legendary in this blog and in my mind. This time she looked at me and said "sit down" (pulling out a chair at the table) then placed in front of me a steaming bowl of goulash and said "eat". Then she proceeded to make me laugh so hard I was out of breath! I was seriously having one of those 'I can hardly move' days and that half an hour of nurturing was like a lifetime in heaven. I forced myself to juice fruit in the evening and overdid the oranges for which I was rewarded with an attack of hives. *sigh*... I am wondering why I am bothering, though my pants are getting looser.

BTW The Best Friend doesn't want to be mentioned in my blog but I can't stop myself singing her praises and being so thankful that I have her.

	Edna Everage Day	DAY 4
Constant Pain	Constant dull aches	Very high level of constant pain and milder headache – got a bit better in the evening.
Pain Rating	5	7 then 6
Stabbing or Shooting Pain	Intermittent but many times a day – hips, knees, shoulders, back, neck – the usual suspects	Both my knees were plaguing me as well as a persistent cramp/spasm in my right calf.
Energy	Like I used to feel when I had a cold or the flu.	Dragging
Skin	Irritation and itchiness usually when I try to relax	Too much citrus has kicked my allergies into high gear and my skin was itchy all over
Plumbing	Varies	Fine
Forgetfulness	Intermittent	Better than average
Depression	A bit down	Fine
Anxiety	Fluctuating at times high	Average
Sleep	Restless, broken, some insomnia	Woke a few times but slept pretty well (with the assistance of meds)
Restlessness	Limited ability to be still	Too much pain for restlessness
Fumbling & Stumbling	Drop things, bump into things, catch feet on uneven surfaces & stumble	Average
Balance & Vertigo	Varied equilibrium issues with occasional vertigo	Poor balance when walking wobbling around like a drunk.
Hunger	Not usually	I felt too tired to do all the things I needed to eat.
Cheating	N/A	Had whole fruit instead of juicing it (see above). The Best Friend fed me some nice home made Goulash so I guess I have failed again... oops

How are you? Fine, if you don't ask for details.

2011-11-11T16:02:00.001-08:00

I've been practicing, in my head at least, a selection of different answers to the interminable question...

"How are you?" (and all it's relatives "How are you doing?" "How are you going?" etc)

My mother, who lived to the ripe age of 90 (nearly 91), always said "Fine, if you don't ask for details." This quote is attributed to Katherine Hepburn in a 60 Minutes interview in 1979 but to be honest I reckon Mum was saying it before then... still... It's a good, slightly humourous response, that acknowledges there are problems and rescues the inquirer from having to pursue this topic any further. There's only one problem - you can't say it day after day to the same person. It is kind of a like a condom, it's only good for one protection! (What would I know about condoms? The last time I fooled around with a bloke "Safe Sex" hadn't even been invented!) Ok, back on task...

I hate lying. It has a physiological effect on me. It significantly raises my anxiety level, which causes me to become tense, which causes muscle spasms, which increases PAIN, which is the whole reason why "Fine" is a LIE!!! Now, I don't feel this way with strangers, shop attendants, receptionists etc, I clearly know that these strangers are just saying what people say when they greet someone... they don't give a brown rat's arse how I am feeling and I don't give a Friar Tuck what they think of me. All's good on that front.

Friends are different.

Some of my friends are REALLY asking, they ACTUALLY want a truthful answer - I'll answer with some kind of assessment relative to how my day is for me. Like last night The Actress asked and I said, "It's been a pretty bad day but I'm feeling a little better now." That was a truthful response and I was comfortable enough, and felt cared about enough, to be honest. It didn't have to lead into a long discussion.

But what of my friends who are not really asking, the ones who say it as a matter of standard form? I have tried "Same old same old" but in some ways that is a lie because with a condition like Fibromyalgia there is no "same old" it is constantly fluctuating, constantly moving, constantly finding new and unusual ways to make me feel like a steaming mess of excretia!

I don't want to be someone who is perpetually mired in my chronic problems so I need a truthful, guilt free way to brush off these superficial inquiries. Sometimes the inquirer doesn't want an answer and sometimes I just don't feel like talking about it or thinking about it. Sometimes I just don't want to whine or whinge or to be perceived as a whinger (which is despised in Australia where we are raised to be perfect specimens with the silent suffering stoicism embodied by our diggers and bushman).

I've been trying on answers like, "Shitty, but let's not go there", or the existential response, "It is what it is", and on those very rare good days, "Better than usual." Sometimes I just avoid answering and bluster on to talk of them. But too often I find myself lapsing into just saying, "Fine" or "Not too bad." and to be quite frank they are lies. Even on my best of days I'm not fine. I find the insincerity of these inquiries and, more to the point, the insincerity of my responses quite disturbing, they start the anxiety cycle.

Maybe I should go over the top in the other direction... Perhaps something like "Great, it's only a car running over me not a bus!" or "Better than a dead roo on the side of the road!" or "Terrific, I just did 13 rounds with Mike Tyson and I still have two ears!" or "The third level of hell is much damper than the second." After all it's all in the delivery. Maybe I could write a song to the tune of "I've Been Everywhere"...

I hurt everywhere, man
I hurt everywhere,
I know it isn't fair, man
My knees hurt as a pair, man
Of pain I have my share, man
But I hurt everywhere. (Need I go on? You get the drift.)

On second thoughts I don't think that would go over very well to the huge crowds of one that I play to.

I struggle with this, it probably doesn't sound like much of a moral dilemma but it is to me. I'm an overly sincere, very serious, frequently humourless person!

Dear Abby,

I don't want to lie to my friends when they ask how I am but I don't want to tell them the truth either... Please help.

[Signed] Aching in Sydney

The Juice Diet Day 3

2011-11-11T15:17:00.001-08:00

The weekend is here and Day 3 was Friday. I have to confess that I have broken the diet on the evening of Day 3 cause I REALLY wanted to go and have dinner with my friend, The Actress, and her beautiful daughters. Then I REALLY wanted to go out to the pub to see her hubby The Percussionist play in his band.

Never being very well versed in the subtleties of self flagellation and deprivation I did what I REALLY wanted to do! I was not too bad though. I watched The Actress make the green chicken curry - all good fresh ingredients, drank water with dinner, and only had two little beers at the pub. (OK one big beer and one little beer).

Here it is for your reading pleasure... Day 3.

	Edna Everage Day	DAY 3
Constant Pain	Constant dull aches	Quite high level of constant pain and continuing headache – got a bit better in the evening.
Pain Rating	5	6 then 5
Stabbing or Shooting Pain	Intermittent but many times a day – hips, knees, shoulders, back, neck – the usual suspects	Left knee feels like it has fallen apart with my lower leg coming off from the top. Other more intense pain in the usual places too.
Energy	Like I used to feel when I had a cold or the flu.	Terrible... About as much bounce as a ball made of clay. Noticeably better in the evening.
Skin	Irritation and itchiness usually when I try to relax	The weird invisible things are walking on my skin today
Plumbing	Varies	Fine
Forgetfulness	Intermittent	Average
Depression	A bit down	Miserable Day/ Happier in the evening
Anxiety	Fluctuating at times high	Quite high for a while then less evident.
Sleep	Restless, broken, some insomnia	Woke many times but managed to go back to sleep relatively quickly. Probably about 6 hours broken.
Restlessness	Limited ability to be still	More tired than restless so getting sore before forcing the movement.
Fumbling & Stumbling	Drop things, bump into things, catch feet on uneven surfaces & stumble	Average, had a bit of trouble not catching my feet on raised surfaces.
Balance & Vertigo	Varied equilibrium issues with occasional vertigo	Average
Hunger	Not usually	I'm hungry and getting sick of this business. My body wants carbs and protein.
Cheating	N/A	OK Sue me – I went to my friend's (The Actress) house and had a Thai Chicken Curry – all home made bloody delicious and all fresh.

The Juice Fast Day 2

2011-11-10T16:15:00.001-08:00

Well it was a busy day starting with the 8.30 appt with the endocrinologist (who says this diet is ok)

I had a terrible headache again for most of the day and as days go it was a bit worse than usual (unless the usual standard needs to readjusted downwards...again...)

	Edna Everage Day	DAY 2
Constant Pain	Constant dull aches	Quite high level of constant pain and continuing headache
Pain Rating	5	6
Stabbing or Shooting Pain	Intermittent but many times a day – hips, knees, shoulders, back, neck – the usual suspects	Average (Regular intense pain but not constant)
Energy	Like I used to feel when I had a cold or the flu.	Worse than average – moving slowly – very tired/fatigued
Skin	Irritation and itchiness usually when I try to relax	Some strange sensations that creeping feeling – prolonged itching and burning of feet after taking off socks
Plumbing	Varies	Fine
Forgetfulness	Intermittent	Average
Depression	A bit down	Flat and thinking about acceptance
Anxiety	Fluctuating at times high	Less anxiety than average
Sleep	Restless, broken, some insomnia	Two blocks of a couple of hours each broken by a few hours restless in the night.
Restlessness	Limited ability to be still	Slightly less restless than average – but I was busy so was distracted too
Fumbling & Stumbling	Drop things, bump into things, catch feet on uneven surfaces & stumble	Dropped several things, my gait was rolling and a bit like I was drunk (which unfortunately I was not)
Balance & Vertigo	Varied equilibrium issues with occasional vertigo	Staggering but not tripping and no head spin
Hunger	Not usually	Kind of missed lunch so very hungry by late afternoon
Cheating	N/A	Had some humus and some olives with celery and some more avocado.

Sorry this is quite utilitarian as I feel kind of crappy today and I used my energy writing the 11/11/11 blog.

11.11.11 - War, Gough, Occupy, Cosmic Opportunism

2011-11-10T14:45:00.001-08:00

I don't support war with the sole exception of self-defense. World War 1, The Great War, was not our war as Australians and yet at the time our society was so culturally and legally tied to The British Empire that Australians felt it was their war. On this day 93 years ago the Armistice was signed and WW1 ended. This image I borrowed from Wikipedia depicts the cover of the NYT on Nov 11 1918.

One of my Grandfathers was a WW1 veteran. A country boy from Narrabri he was at Gallipoli (an honour that carries great kudos in Australia), actually he was there only very briefly. He had contracted a non-specific venereal disease in Cairo and was evacuated from Gallipoli to a hospital ship and sent home. An ignominious story that heavily contradicts the family legend. My other Grandfather was a trade union leader, Secretary of the Boiler Maker's Union, Member of the NSW Upper House in the famous Jack Lang Labor Government, in the Official Stand at the opening of the Sydney Harbour Bridge, and he was imprisoned during WW1 for actively protesting with his Unionists against conscription. (He was English by birth having grown up in the destitute suburbs of Leeds in Yorkshire.) Anyone hazard a guess whose legacy I want to carry?

On November the 11th 1975 the then Governer-General, Sir John Kerr, dismissed the Gough Whitlam Labor Government, creating the greatest controversy and the most dramatic event in Australian political history. Here I really wish I could insert a clip showing the incredible Robyn Archer singing her song "The Jubilee Cakewalk" but you are going to have to put up with my (probably inaccurate) 30 year old memory of the lyrics... My apologies to Robyn Archer for any errors, it has been a VERY long time since I heard anyone other than me sing the song.

Well the Queen is having a Jubilee and I don't begrudge her that.

But when I think of what her power did to my country I don't feel like raising my hat

When a white-haired old bugger name of Sir John Kerr

Sacked the Labor Government in the name of her

Old money bags Fraser refused supply and the Governor-General waved bye bye

To socialism, the Governor-General waved bye bye.

I've very fond memories of the Queen she's one of the few I've seen

As an antipodean child of nine I was taken to the race track made to stand in line

Now it was very hot and I had cause to faint

She's a benevolent monarch it's not her fault it ain't

But if our democracy is in the political shit she's not responsible for it

Or is she? She's not responsible for it.

Now she's given him a title, the Companion of Honour is he.

But anything of honour in the things that he did would be very difficult to see

I didn't set out to call the Queen a creep but you can tell a lady by the companions she keeps

And if our democracy is in the political shit she's not responsible for it

Or is she? She's not responsible for it.

Well I voted once and I voted twice but majority vote melted away like ice

Old money bags Fraser refused supply and the Governor-General waved bye bye

To socialism, the Governor-General waved bye bye he caused a schism

The Governor-General said exactly what I'd like to say to him

Bye bye Governor-General, Bye Bye.

I was only a kid when this happened... I still remember exactly where I was when I found out. I was on a bus outside the Registry Office between Hyde Park and St Mary's Cathedral and my friend Miranda told me the news.

Today has been declared an international worldwide Occupy the Streets day of demonstration but there doesn't seem to be much going on here in Sydney. There is an informal discussion this afternoon and I am considering attending (except I am saving my precious limited energy and endurance for going out later tonight and I don't think I can do both.)

Still in acknowledgment of my support of the Occupy movement I wrote the following comment on the Occupy Sydney Website.

How can we not support the Occupy Movement?
I believe there is a gross inequity in the distribution of wealth in our society. I watch the rich get richer and the poor get poorer and I know it is wrong.
The global recession has caused corporations to tighten their belts (read; get more work out of less people under lower standard working conditions) and yet the very top of the tree continues to reap huge profits. Government doesn’t help because their principle concern is always getting re-elected and the top of the tree has the power to heavily influence an election.
If I don’t stand up to be counted I have no right to complain and I think we should be complaining LOUD AND LONG!
How can we not support the Occupy movement? It is OUR movement after all.

Finally, a queenie little chap on TV told me that today is cosmically significant and so it is a good time to put out into the universe the positive wishes for what you want to attract so here is my wish list (in deference to Mildred Ratched I am wishing BIG)

I want the world to be happier, healthier, and wealthier (read - wealth shared more fairly)
I want war and religion to get off the center of the stage (Play John Lennon's Imagine to express my thoughts on this matter)
I want my health back
I want to love and to be loved in return
I want a safe comfortable environment in which to live long-term
I want to not have as many things to worry about
I want many varied opportunities for laughter
I want to spend time with interesting, caring, socially conscious people
I want you all to have your wishes come true too.

I am hoping to post this as close to the 11th hour on this the 11th day of the 11th month in the 11th year... I who was born on the 29th (11) for whom 11 has always been my favourite and most lucky number.

Happy elevenses to you and yours - may the magic be real!

Can't sleep

2011-11-10T08:49:00.001-08:00

Oh I can't sleep at night,
But just the same
I never weep at night
I call your name

hang on, whose name?

Dammit I need a girlfriend to annoy with my restless sleep and endless whinging!

I wake up and no one complains...

TOO weird!

Boring update

2011-11-10T03:11:00.000-08:00

Ok boring update - today I saw the endocrinologist and found that do in fact have Hashimoto's Disease but that managing it with a thyroid hormone supplement will not be the magic bullet that will solve all my other problems. It might help a bit with fatigue and perhaps weight loss, cholesterol etc but it won't alleviate the primary problems caused by the fibro ( duh that would be pain)...

She will have the report ready in time for me to see the immunologist on Monday which is good!

I also registered with the pain clinic (filled in their form which was like a "fill in the blanks" version of War and Peace). I hope they will see me quickly because the government is interested in their opinion of me... (of course their opinion will be that I am, "bright, vivacious, charming, intelligent and great company" just like my personals advert says I am!).

Too many ologists...

Oh well too tired to be interesting ... until the morrow!

The Juice Fast Day 1

2011-11-10T00:08:00.000-08:00

This was an easy day and boy did I need it to recover from the day before. The juice diet is not that hard at the moment. I had some avocado and almonds at lunch to take the edge of my desire for bulk. Dinner was a weird veggie concoction followed by a delicious mushy fruit juice with apple, pear and some mango.

Starting around lunch time and running through to bedtime I had a terrible splitting headache which my mate The Horsewoman says is natural when you are "detoxing".

Still it isn't too hard so far...

	Edna Everage Day	DAY 1
Constant Pain	Constant dull aches	Quite sore recovering from yesterday – Headache which is not usual
Pain Rating	5	6
Stabbing or Shooting Pain	Intermittent but many times a day – hips, knees, shoulders, back, neck – the usual suspects	Average (Regular intense pain but not constant)
Energy	Like I used to feel when I had a cold or the flu.	Average (Slow and tired)
Skin	Irritation and itchiness usually when I try to relax	Slightly irritated
Plumbing	Varies	Fine
Forgetfulness	Intermittent	A bit worse than average
Depression	A bit down	Quite Miserable
Anxiety	Fluctuating at times high	Average (Regular intense pain but not constant)
Sleep	Restless, broken, some insomnia	Slept 2.5 hours awake and restless 2.5 hours slept again 1.5 hours
Restlessness	Limited ability to be still	Average (Regular intense pain but not constant)
Fumbling & Stumbling	Drop things, bump into things, catch feet on uneven surfaces & stumble	Quite bad but not as bad a Day 0
Balance & Vertigo	Varied equilibrium issues with occasional vertigo	Stumbled a few times no head spins
Hunger	Not usually	Very hungry with lunch
Cheating	N/A	Had avocado and some almonds with lunch juice but that apparently isn't cheating

The Juice Fast - Day 0

2011-11-08T18:38:00.000-08:00

Ok here's the story...

My good friend, The Horsewoman (who is fit, fabulous and nearly fifty!) has talked me into going on a 10 day juice only fast.

I'm not at all sure it will do any good, in fact I was somewhat concerned that it might be harmful but Dr McLovely grimaced and said I would be starving but that it probably would do no harm.

Most people with chronic illnesses, in my experience, will get depressed and frazzled (or as my Mum would have said "I'm at my wit's end") with the relentless nature of their condition and will try the occasional fad or radical diet. This is mine. Being a rather analytical person by nature I thought it might be interesting to post here on the blog every day and give any poor sod who's reading this an update. So I thought I would put together a little spreadsheet (yes I confess analytical) and look at the things that bother me consistently and see if there are any noticeable changes. Now as stated elsewhere in this weighty tome yesterday was not a good day... actually it was a BAD day so it is not a very good yardstick against which to measure these subjective assessments of my condition. So in addition to starting with an assessment of yesterday I will include an assessment of my version of an average day, I'll call it the Edna Everage Day - Day 0 is yesterday and I started last night.

	Edna Everage Day	DAY 0
Constant Pain	Constant dull aches	Not quite “Shoot me now!” but a VERY achy day
Pain Rating	5	7
Stabbing or Shooting Pain	Intermittent but many times a day – hips, knees, shoulders, back, neck – the usual suspects	Always somewhere – shoulders, elbows, hips
Energy	Like I used to feel when I had a cold or the flu.	Moving very slowly but getting things done – Very tired/fatigued.
Skin	Irritation and itchiness usually when I try to relax	My clothes/shoes were hurting me – hypersensitive
Plumbing	Varies	Fine
Forgetfulness	Intermittent	Average
Depression	A bit down	A bit down
Anxiety	Fluctuating at times high	Fluctuating at times high
Sleep	Restless, broken, some insomnia	Broken about 6 hours in total
Restlessness	Limited ability to be still	Unable to be still at all.
Fumbling & Stumbling	Drop things, bump into things, catch feet on uneven surfaces & stumble	Bad. Dropped several things, tripped multiple times and nearly fell.
Balance & Vertigo	Varied equilibrium issues with occasional vertigo	Equilibrium was off, staggered several times, slight head spin.
Hunger	Not usually	Hungry at night after juice
Cheating	N/A	Not yet...

Dinner last night was an interesting concoction of carrots, spinach, celery, apple, ginger and tomato followed by a juice of apple, pear and celery (for dessert LOL).

Well stay tuned if you are interested otherwise my normal rambling blogs will still keep coming and you can skip these ones that will be headed as above.

Let it be said at the outset, I'm a skeptic and I don't think I will see any significant changes in my pain or fatigue levels, however, I would be DELIGHTED to be proven wrong!

Expectations are the root of all disappointment

2011-11-07T20:01:00.000-08:00

The title of this blog is my phrase - I coined it about thirty years ago and I have never heard anyone else saying it... It came to me in one of those fits of clarity when one of the pieces falls into place... It came to me when I had an awakening that my dad was never going to be like Gidget's dad. He was never going to be Mike Brady or the character Brian Keith played in A Family Affair; not Father Knows Best, not Ward Cleaver. There was a seminal moment when I realized that I was unhappy because I had expectations that were not being met.

Were they reasonable expectations? I'ts a good thing you asked that question! Is it ever reasonable to expect someone to give more than they want to give? Is it ever reasonable to expect someone to be someone they are not? Is it ever reasonable to think you should be welcome at your father's home?

I wrote a blog the other day about my disappointment in my brothers not attending Eileen's funeral and I took it down because I thought I had been too hard on them. Their reasons were valid and it is unreasonable for me to subject them to the standard of honour I apply to myself. Yesterday before the funeral Gay Brother called me to ask me to convey his regrets which was fine, but in the conversation I told him that I have a problem with my thyroid (among other things) and he casually said that Straight Brother has also. Straight Brother has a auto-immune disease that is strongly hereditary and Gay Brother had been tested but did not have it. At the time I was only mildly perturbed and the conversation moved on. Later when I was thinking about the conversation I started to be very concerned that no one had bothered to tell me. If the condition is hereditary and Gay Brother bothered to get checked out why did it not occur to either of my brothers to tell me so that I could be checked out? Why didn't anyone remember that I too carry the same genes and the same propensity to be affected by the same conditions? It's just another reminder that I am invisible, out of sight - out of mind I guess. It looks, from my blood results, like I have Hashimoto's Disease which manifests at hypothyroidism where my brother's condition manifests as hyperthyroidism. Still, I may have been further along the road to understanding my issues if someone (anyone) had bothered to mention this "hereditary" problem to me. Or is that just another unreasonable expectation?

Today has been physically a BAD day for me. The pain in my shoulder when I washed my hair this morning was so bad I had to sit down and sweat for a few minutes before I could move enough to dry myself, today is one of the days when my clothes are hurting me, when any movement can stimulate a stabbing pain, when everything aches. If I hadn't had an unavoidable appointment I would have spent the day recovering from the not very strenuous day yesterday. At that interview today with the government I was asked when I last had a good day and it made me realize that my definition of a good day is changing. I need to think about that some more. What I call a good day at the moment might well have been what I would have called a bad day 2 years ago. Are these just my expectations making natural adjustments to my situation?

If I could find a way to have no expectations would I always be delighted with what I was given? Would every day be a good day?

(Is this secretly just another point of view on the pessimistic optimist?)

Off to see Dr McLovely now after my urgent horizontal rest.

Too tired really - just a quick update.

2011-11-07T03:21:00.000-08:00

Today we said goodbye to Eileen, I cried so much I think I became dehydrated. I was almost embarrassed to be weeping so steadily. But I wasn't only grieving for Eileen, I was crying for my mother, my father, my aunt and uncles, my cousins, my friends who are gone, and for all of us who are left behind. I have decided that grief is cumulative. Another thought that occurs to me is that I want to cry so often and don't. I want to cry when it hurts so much I feel like it will never ease, I want to cry when I'm told to suck it up cause it isn't that bad, and I want to cry when the level of irritation my body is feeling makes real rest almost impossible. So I have a lot of repressed tears, well I did before filling several tissues today.

The Boy was wonderful and I am so very grateful to have him nearby again. The Best Friend deserves to have her halo polished (with the deluxe wax job!) for being so thoughtful and kind today. I arrived at her house (where the boy will be staying for the next couple of months) to find she had laid a sheet and a pillow on the couch so I would have somewhere nice and clean to lie down immediately. I wanted to worship at her shrine and of course (in an effort to make sure I left no tear duct even vaguely moist) I cried with relief to be horizontal, safe, and able to let go of the rigid determination to "soldier on" for at least a little while. (You will be proud of me to know I managed NOT to whimper!)

I have a huge day tomorrow again and I don't know how I am going to drag myself through it. Doctors, the Government, more doctors... But I will do it because I have waited weeks for these appointments.

I just want to finish by saying that there really are some phenomenal people out there... we lost one in Eileen but others remain. I feel a bit like the tarot card the 5 of swords... 3 are gone but 2 remain...

All is not lost.

A mighty Big day! Or a big Mighty day

2011-11-05T20:43:00.000-07:00

Well my body is feeling like shit and I'm not surprised! I really pushed myself yesterday and I had a HUGE day.

I rested all day on Friday in preparation for Saturday hoping like crazy that I would be feeling ok and as fit as possible so that I could attend the Occupy Sydney Rally. I TRULY believe that THIS is our chance to try to make a difference. Now is the time for moderate, ordinary people to stand up and be counted and damn-it I'm going to be one of them! In spite of the inconvenience, in spite of the pain, in spite of the cost, in spite of the small difference one person can make - I WENT.

My old friend from kindergarten, I'll call her The Reader couldn't make it, though I forgive her and fully understand why, but my other friend from high school, The Radical, was there which was excellent! I found a seat and listened to the speakers occasionally joining in the chanted responses... "whose streets? OUR STREETS" "whose world? OUR WORLD" and when the group took off like a herd of turtles up George St I ambled along, stick in hand. We didn't "march" (I use the word very loosely) far, only about 4 blocks. At one point I shortened my route by cutting through an upscale mall (the MLC Centre) and enjoyed the respite of the shade and the escalator capitalism offered me (LOL - the irony wasn't lost on me even as I hobbled past Gucci, Cartier and Louis Vuitton). I was pretty exhausted by the time we reached the assembly point so I didn't stay long there. However an interesting thing happened on my way up George St - I was interviewed by the nightly news people (not Murdoch or Packer LOL) and although they used my least coherent snippet I did make it into the newscast. Rats - I was going to put the link in and tell you where to find me but it directs to a more recent story now! ( The Best Friend managed to catch the story and said I should commiserate with Obama that they chose the wrong soundbite.) I think they approached me because of my grey hair and walking stick, little did they know, I launched freely with "I'm not against capitalism but I am against corporate greed, there is a gross inequity in the distribution of wealth in our society, the rich keep getting richer and the poor keep getting poorer and it's wrong..." I suspect I wasn't quite the dithering, benign woman they were expecting. The bit they chose to show was something like "there needs to be more sharing of the wealth"... oh well.

The need to be horizontal was becoming overwhelming, I'm like a drug addict needing a fix, so I had a lie down on the back seat of my car while I waited to pick another old friend up at the train station. She was delayed by the trains and as much as I was busting to see her I was really glad to have the extra time to rest.

I don't know where to begin to tell you about my wonderful evening! I literally laughed so much my sides are aching (and Felix the Cat was not present!). Thirty years ago, when I was a university student for the first time I met an incredible woman, let's call her The Lioness. We were working on a student theatre production together, I was acting and she was doing costume and set designing, and instantly we became friends forever. She is a person who exudes kindness, love and good humour. Well back in 1981 she took me back to her house where she lived in share accommodation with a tribe of people and there I met a woman who was to become another of my best "friends forever" friends, let's call her, The Actress. One of the housemates, who now lives in the US, is a close phone/internet friend still, and another, who I didn't know quite as well but whom I always enjoyed I shall call, The Scientist. Last night the four of us who are in Australia met for the evening.

I can't remember (not kidding here) the last time I had such a wonderful evening, the last time I laughed so much, the last time laughter and good company took most of my aches and pains away (probably aided by a few libations LOL). That amount of laughter is dangerous for middle-aged women who have given birth! Even now as I try to think of ways to convey the amusement I am laughing. The Lioness, who happens to be 5' 10" and slender, getting escorted to the ladies room (a novel experience) by a little Chinese waiter was one hilarious moment... on her return to the table upon inquiry about her escort it was explained that there is a code to get back in from the bathroom and he tried to show her but she "can't see and can't remember" so he just provided an escort instead. The Actress was wearing a pair of simply divine bright red high heels and so she became "Dorothy" for the evening followed by The Lioness (Lion), The Scientist, who is brilliant by any estimation, (she asked what the Scarecrow, wanted, to which I replied - "a brain!") and me, with my crunchy creaky body (Tin Man) and we followed the yellow brick road around Chinatown and eventually back to The Actress's house where we got to have dessert and a cuppa with her wonderful hubby, The Percussionist.

This period of my life has been quite unusual. I don't have any new friends at the moment (aside from my beloved mates on the other side of the computer screen!) I spend my time, when I do socialize with people I have known for ALL of my adult life and in some cases most of my entire life. Usually we have had long breaks in our contact, heaven knows I am a poor friend in that department, I leave it too long, get busy, feel like I have nothing of value to contribute, move to the other side of the planet, a million strange and twisted feelings prevent me from maintaining regular contact. Yet here they are, this collection of extraordinary women who I was fortunate enough to befriend in my youth, they are amazing, and beautiful, and funny, and loving, and quite frankly they are everything anyone would want in a friend. It makes me feel unworthy but still so damn lucky.

We are texting backwards and forwards today someone clever (The Scientist, quelle suprise!) seems to have figured out how to text everyone at once. The laughter and warmth survives despite the long time it has been between drinks. But it isn't just these three... It's The Reader, The Radical, The Best Friend, The Horsewoman, The Ex Girlfriend (X2 LOL), The Separatist, these are the incredible women I have rediscovered and I am going to do everything I can to never get so far away from them again.

When vim and vigour vamoose

2011-11-04T06:14:00.000-07:00

It sounded like a cute title and then I read the definitions and was struck by the degree of applicability!

(The following definitions are taken from Dictionary.com)

Vim (Noun) - lively or energetic spirit; enthusiasm; vitality
Vigour (Noun) - healthy physical or mental energy or power; vitality
Vamoose (Verb) - to leave hurriedly or quickly; decamp

Until the beginning of September this year I had not been a full time resident in Sydney for about 23 years. Although it is my home town, I was born and educated here, as were both my parents. I consider myself a "Sydneysider". Moving "home", and through the wonders of such tools as Facebook and Linked In, I have managed to reconnect with many of my old friends. Some I have maintained contact with throughout all my travels (perhaps infrequent but certainly reoccurrent), others I had thought were lost forever. At present I am staying with a friend who I met in 1983 when we were a couple of horse crazy girls driving horse-drawn vehicles full of tourists. The other week I went to Occupy Sydney and met up with an old school friend who I had known since 1975 and had not seen since 1981. I have reconnected with my dearest friend (another school mate) and we have a cup of tea (like a couple of old biddies) several times a week. Tomorrow I will catch up with two friends I met in 1981 when I was at University the first time, and on Wednesday of this week past I had lunch with a woman I went to Kindergarten with and had not seen since 1978.

My friend from Kindergarten/Primary School (Elementary for you North Americans) and I spent nearly three hours together talking and to be honest we never missed a beat. We ate, had a beer, I stretched and hobbled around as needed (and managed to resist the urge to lie down on my booth seat!) and we talked.

Ours was a bit of a funny story really. As kids we were thrust together to some extent cause our mother's were friends, we were in a small school together and to be honest neither of us really fit in with the "cool kids". We were both being raised by divorced women (no big deal today it was a different story in 1970!) We both had professional and relatively affluent fathers who had shit on our mothers in the divorces. We both read like wildfire and we both had a passion for the works of the wonderful Enid Blyton. Our closest times were spent playacting characters from these Enid Blyton books and running around the neighbourhood, and the mudflats on the Lane Cove River, pretending we were having the same kind of adventures as the Famous Five or the Secret Seven. In year 5, I was moved to a different school and things changed. Although she joined me at the new school from years 7 to 10 we never resumed the same level of close friendship. She was an intellectual bookworm (a genius I believe) who was quite a loner and I was a gregarious, athletic girl who was always participating in one activity or another. We remained friendly but we weren't really friends and our shared history slid away like so much other flotsam and jetsam bobbing in our wakes.

You must be wondering by now what this has to do with my title and the definitions in my introduction. Never fear! I won't leave you hanging - I'm on my way back to the point.

Of all of the old friends I have reconnected with no other has referenced so clearly who I was when I was young. She said, "You were fearless, You'd do anything!" She pointed to a palm tree that probably stood fifty feet tall, and said, "You would have been at the top of that." I would have too. I would have shimmied up that naked trunk, like a monkey, and hung upside down from the fronds at the top. She told me something I had never known; that she had envied me my fearless physicality. I was the living definition of vigour and enthusiasm. My barely controllable surplus of energy and my readiness to participate were a hindrance to me as a teenager. I didn't have Buckley's chance of even simulating the droll ennui of the "cool girls" the vitality, the vim, was sparking from me like electricity, in fact I was the very picture of a "live wire".

Until a few years ago I would have still described myself as very enthusiastic. One of the reasons I loved living in the US is that enthusiasm is appreciated there - it actually attracts people rather than making them look at you like you are embarrassingly energetic. I think mentally I am still capable of enthusiasm, I get enthusiastic about writing these blogs, I am enthusiastic to convey clearly what I think and feel. The outward signs of my mental passion have dimmed though... My body no longer permits me to move or respond quickly or forcefully, and the crisp and powerful gestures have been watered down to careful and restrained movements.

Twelve hours from now I am going to attend the Rally to Re-Occupy Sydney and I am hoping that my friend from kindergarten will be there. She doesn't like crowds, but she said she will try. My other friend has said she is coming too (the one I met up with at the other rally).

I don't like crowds either and I'll stay well clear of any mass of people, I'm not fearless any more, I don't want to be bumped or jostled - that shit hurts! I would go everywhere in a bubble of padding if I could. I guess the bottom line is that when vim and vigour vamoose you have no choice other than to take it very gently.

The Berlin Wall - Occupy... think about it!

2011-11-02T19:23:00.000-07:00

This just came into my facebook feed

CHASE BANK IN OAKLAND RIGHT NOW!!!
This is what a Bank Shut Down looks like
No Violence, No Robberies, Just NO BUSINESS
Retreat/IS NOT/an option MOVEMENT ACCELERATED

Wall Photos

CHASE BANK IN OAKLAND RIGHT NOW!!!!!!!!!!!!!!!!!!

Does anyone remember 22 years ago when we sat glued to our lounges and couches and watched the fall of the Berlin Wall?

Does anyone remember the feeling as those brothers and sisters - separated for nearly 30 years - partied on the wall and chipped away at it until it crumbled?

I do

It was tangible proof that individuals DO make a difference, that the movements for solidarity in Poland throughout the 80's HAD made a difference... That oppression can not perpetuate indefinitely.

The Berlin Wall holds particular significance to me because when I was 10 I was there. An Australian girl from a privileged and sheltered background, I will never forget staying at our hotel on the Unter den Linden in West Berlin and the sight of the wall truncating that beautiful avenue. We went through Checkpoint Charlie into East Berlin andsuddenly the everything seemed to be in black and white instead of in colour. The American guards at the checkpoint took our passports and gave us stern warnings "Be back before dark because we can't come in after you". Before dark! We barely lasted 20 minutes! West Berlin had more neon and flashing lights than I had ever seen in my not very long life and 100 yards away was the most depressing place I had encountered. I was only 10 but the impression it made will never leave me.

I am not suggesting there is a great parallel between the fall of communism and the Occupy Movement aside from the rising up of the people, of ordinary people, you and me (and even some Republicans (US) Liberal Voters (OZ)!!!) are saying "enough is enough".

I love this sign it states my position clearly,

I don't think this is about bringing down capitalism. it is just about sharing. In this world of abundance why do some (1%) have so much that they could never in their wildest dreams spend it all, when everyone else (99%) is struggling?

Please get behind this movement, make a supportive statement, attend if you can. The more of us who calmly say, "This just isn't right." the sooner someone somewhere will start taking notice.

I don't know what the symbol will be for this movement, I don't know what will be its BerlinWall, but I do know that when there is a change to corporate greed, and it will change, something will arise as our monument to massive social change and whatever that something is I will hold it sacred in my heart!

Saturday, Noon, Town Hall, Sydney - If you can make it, let me know to look for you!

People laughed in concentration camps

2011-11-02T18:54:00.000-07:00

Freud, that old clever clogs, referred to laughter under adversity as "gallows humour" and in my family "black" humour is welcome and perhaps even expected. When Mum was dying, an unbelievably devastating loss to me, we were still making jokes - We talked about renting a fishing boat so we could make her wish to be fed to the sharks come true... at the blackest moment after the doctor had left the room someone piped up "must be time to rent the boat". That was her humour too, she would have been laughing right beside us if a persistent bleed in the brain hadn't been stealing her away. When there is NO insecurity about how much you love someone, when everyone KNOWS and it is unquestionable, then everyone KNOWS that your heart is twisted in agony even though your wit is still snapping out quips and puns.

[WARNING SWEEPING GENERALIZATION TO FOLLOW]

I found, in my time in the US that many American's take things a bit more seriously than Australians do. Lots of my American friends have incredible senses of humour and make me laugh constantly, but the black humour thing... um... maybe not so much. So to my American mates just know that I am not really a sick and twisted individual I'm just an Aussie embracing irreverence and upholding my national identity! (A regular beer, an occasional meat pie, and a passionate love of the water covers most of the bases.)

Humour is a coping mechanism, a tool that helps us to escape for a moment, to release tension, to breathe more deeply and maybe to reset some of the mental roundabouts that our minds become caught upon. I think that living with a condition like Fibromyalgia makes it very easy to fall into a trap of downwardly spiraling mental thought processes... The name of my blog derives from just such an attempt to redirect mental processes into nonsense and silliness instead of gloom.

Nobody loves me

Everybody hates me

Think I'll go and eat worms

Big ones, small ones

Fat ones, thin ones

Worms that squiggle and squirm.

I'll (here the tempo increases) bite their heads off

Suck their guts out

Throw their skins away

Nobody knows how well I live on worms three times a day!

It's hard to explain to someone who doesn't have a chronic illness how you can be laughing and making jokes while still feeling like crap. But this isn't a case of food poisoning that brings you down for a little while, it isn't something where you can permit yourself a couple of days of wallowing in self-pity knowing it will all be better by the weekend. This condition is unrelenting and in spite of the pain and fatigue you still have to try to find ways to enjoy life and you must find ways to laugh. Just today someone, whom I love, told me "it's not that bad", "you're okay". I tried to explain how much I push myself for them, how much I hide the truth for them, how much I am at my very best when I am with them, and how much I pay later in private for those efforts. More to the point I need to explain that I can't go on doing it. That it's impossible to sustain a appearance of high energy and vitality now. I want this person I love to know that when I feel joy and when I find things funny it doesn't mean that I'm not in pain. You can't live your life in a morass of misery where your every thought is about how your body feels. It would be far too easy to sink into a very dark place if you did.

So like the bloke on the way to be executed who when offered a cigarette quipped back "no thanks, I'm trying to quit", I'm going to keep trying to find things to laugh about. It's Thursday and so tonight I am back to the Synagogue for another cooking lesson. I'm resting up today so I can really pay close attention and have the stamina to make it through two hours.

No silly, I'm not going to pay attention to the class, I'm going to pay attention to the people, and the ripely humourous moments that occur, so that I can remember them to tell you!

Unconditional Love and Loss

2011-11-01T05:09:00.000-07:00

When my mother died in late 2008, for me, unconditional love essentially died with her. But not quite.

Today, 1 November 2011 we lost one of the most wonderful people I have ever had the privilege to know. My mother's best friend, my last source of 'mother love' died today.

If I had suddenly turned into Smackwater Jack and shot down the congregation Eileen would have said that they must have deserved it and that I must have had a very good reason to do it. Her love and devotion to me, to her own two daughters, and to many many others should be the blueprint for all love; unconditional, it was full of warmth and humour.

When I was a very little girl, maybe two, my father hired a boat on the Hawkesbury and Eileen and the girls came up to visit with us for the day. At the end of the day we deposited them on a beach and motored off into the river and I, family legend has it, stood at the back of the boat wailing as loud as I could and crying out, "Eileen... Eileeeeeen... Eileeeeeeeeen" I was inconsolable until long after they were out of sight.

Another adventure, perhaps a little earlier in my life, was the day I tried to open her Grandfather clock and pulled the whole enormous thing over on top of myself. Someone somewhere was looking out for me that day as I ended up inside the clock body and unscathed... and crying out for... "Eileeeeeen"

When I returned to Sydney a couple of months ago the first person I wanted to see was Eileen but with her birthday coming up her daughter and I decided to surprise her on her birthday with my visit. I last saw her about a month ago on her 95th birthday. She was half blind, half deaf and clearly in failing health but still laughing, joking, flirting with the male nurses, and still more pleased to see me than anyone has been in several years. I was meant to see her tomorrow...

Not bad for 95!

She died in her sleep as she had always wanted - what more can you wish for someone you love? If there is a heaven she has an express pass and waiting to welcome her in are her long gone husband Noel and my Mum, no doubt with the kettle on and a cuppa ready to go.

I feel so very fortunate to have been special to someone as special as she!

I'm silent now but inside I'm still crying out...

"Eileen... Eileeeeeen... Eileeeeeeeeen"

When bad news is good

2011-10-31T04:15:00.000-07:00

Today I saw Dr McLovely again, I actually told her that I call her Dr McLovely in my blog and, living up to her name, she blushed!

She had all my test results back and there were some not so nice results.

Quincy MD I'm not, so my grasp of the significance of all these things is tenuous at best but here is the upshot...

Whatever indicates a possible auto-immune disease was elevated.

Something to do with my thyroid was wrong and she said my brain was having to work very hard (no news there) to try and get my thyroid to produce enough of whatever makes my metabolism metabolize. This makes perfect sense because I have always been what the old cow cockies (beef farmers) would call an "easy keeper". I don't eat very much but I don't lose weight either. I'm not the size of a barn or anything but I am generously proportioned.

The thingy (that is a technical term for those of you who are uninitiated) that indicates Celiac Disease was high. Potentially this could account for the fatigue and what I had presumed to be a touch of IBS.

My sugar levels were elevated on a fast test which could indicate diabetes. I told her about my weird sugar stuff from when I was pregnant. I used to go to my pre-natal checkups every month and every month my sugar levels were elevated on the pee test so dutifully I would trot across the road to the path lab for a blood test and every month my blood sugar was fine. Dr McLovely is an expert at that breeding stuff, pregnancy, family planning etc and she laughed when I told her this and informed me that I had had Gestational Diabetes which apparently makes a woman predisposed to develop real diabetes later in life.

There were few other odds and sods... apparently I have at some time had glandular fever (news to me!) Naughty cholesterol is high, nice cholesterol is too low (the bad guys are in the lead in the cholesterol Stupidbowl apparently).

NOW - a "normal" person might come out of the surgery reeling from news like this, they might be HORRIFIED or even TERRIFIED!!! But, as anyone who has dealt with Fibromyalgia symptoms knows - we are far from normal! When you live your life with a myriad of unpleasant problems that have no known cause and no known cure it does strange things to your mindset. It makes you sometimes almost wish that you had one of the trendy, clearly defined, conditions. Something that is easy to explain to other people; something that has a well publicized name; something that can be nailed down with a specific test; something that potentially can be CURED!

I'm not very keen on the idea of having diabetes; I lost a very close family friend (almost a sister) through complications of diabetes earlier this year at the tender age of 52. I'm not keen on having thyroid issues or Celiac Disease. I'm particularly not keen on having some kind of auto-immune disease (the idea of my white blood cells attacking some part of me is like a bad B Grade horror movie in my mind). Still, let's face it Fibromyalgia is not a pic-a-nic with Yogi and Boo Boo either.

In spite of blood tests up the wazoo over the last two years no one has ever seen these results before, maybe Dr McLovely ordered a more comprehensive series of tests, maybe Aussie path labs are better, maybe all these wonderful problems are all new... I don't know.

The possibility is that some of these things might explain some of the fibro symptoms and that some of these things might be manageable with diet or meds, some of them might even be curable... Of course I have been dancing with chronic pain for most of my life... long before Dr MingDynasty decided to call it Fibromyalgia so I don't really hold out much hope that these things are INSTEAD of the FMS. Most likely they are in addition to FMS... but still an explanation, however limited, is a welcome piece of news.

Wouldn't it be cool if they could up my thyroid dooverhickey (another technical term - look it up!) and increase my metabolism? Maybe I could become trim, taught and terrific and all the eligible lesbians in Sydney would suddenly be bashing down my door!

So back for more blood tests in the morning - glucose tolerance etc... I made an appointment with the Immunologist, I think it is for January 2031 (He is a VERY important person). They told me they process their cancellations every Friday morning so I have set an alarm to remind myself to annoy them weekly. They asked if I wanted to see him about chronic fatigue or allergies... I said I have fatigue and auto-immune irregularities and this stuff is ruining my life and that 2031 is just not soon enough! Hence the suggestion to call on Friday mornings (silly woman telling me that - she'll rue the day!)

Just a side note - anyone in Sydney or environs there is a rally to Re-Occupy Sydney at Noon this Sat at Town Hall and if I can drag my exhausted arse out of the house I will be there!

NB - My lovely American friends I was only kidding about the Path Labs
and
The immunologist appt is 2012... ok forgive me, so I exaggerated a little!

Why doesn't "Acceptance" mean getting presents?

2011-10-30T05:34:00.000-07:00

I've been going through some barriers lately... Delusion busting I guess....

I hope I'm not the only one who has successfully perpetrated a fraud against myself.

When I moved home to Australia in the beginning of September I was under some strange illusion that I would be fine when I got here. Without a magician in sight I had managed to convince myself that a reduction in stress and the sights and smells of my homeland would make everything better (well at least everything manageable). Maybe it was the high of surviving the packing and moving, I don't know, but for about a week I did feel pretty good. In pain, slow, tired but not too bad - perhaps I was just very distracted with excitement and with seeing all the changes that have taken place in my absence. I don't know. Then I overdid it and crashed - and crashed I have stayed.

For a person with a poor tolerance for stupidity I was really stupid. I KNOW that this happens, I KNOW that the windows of time when I can feign normal are further apart and shorter all the time, I KNOW that I have been getting steadily worse for several years. Of course none of that was front of mind when I was spinning my web of self delusion!

My self image is undergoing a redesign and the new decor is not very attractive, brown, grey and gloomy have never been my colours! (Yes I know gloomy is not a colour - but it should be). I've been thinking about acceptance.

I remember the first time I used a motorized chair. It was when I was living in the US and on one very pain filled day I just couldn't face the endless aisles of Walmart. What a relief it was to use the scooter. I know people stared at me with my robust appearance of strength and good health, but for once I did not waste my precious energy trying to persuade my friend that we needed to leave! For once I wasn't desperately looking for somewhere to sit down and eyeing off the changing rooms to see if they were clean enough to take a moment horizontally. I also remember the intensity of the emotions that surround the renegotiation of self image that using an aid arouses. In fact I have been dealing with this again lately as I find I need to use a walking stick pretty much any time I am walking anywhere. I think there is a possibility that I am deluding myself about this too cause I tell myself it is mostly about balance, and yes my balance is appalling, but I think I am also giving my legs a bit of a break and letting my arm and shoulders take some of the strain. I know people look at me differently when I am using the cane, they move differently around me. It is a visible sign of the ravages of my invisible condition. But there are gains too, it kind of explains my pitiful slowness and my twisted grimaces; it gives me permission to let the pain and fatigue show, and that is a relief. Hiding, faking, pushing, straining and acting are bloody tiring. Yes "FAKING the thing so many people say fibro diagnosed people are doing... Well naysayers, you are right, we are faking... we are faking that we are ok when we are NOT, we are faking that we are like everyone else when we are NOT! Faking being normal not faking FMS.

Tomorrow I am seeing Dr McLovely again. My test results and xrays will be back. I need to write myself a list of things I want to mention to her cause I can't trust myself to remember them. I've been having some trouble with my vision but I think I will leave that for another time if it doesn't resolve, it's really only in the mornings anyway, maybe like morning stiffness for my eyes where they seem to take a while to wake up and pull focus correctly.

Anyway time to sleep - I had a big day today - I changed the sheets!

Family

2011-10-29T05:32:00.000-07:00

Warning - down beat - woe is me - gonna eat worms blog to follow.

Stop reading now unless you take great interest in train wrecks and freeway accidents.

I'm warning you for the last time...

Somehow I have managed to become one of those people almost nobody cares about.

My son is an exception to this sad sack statement. I have a few good friends and I am not in any way belittling their love and kindness, I do feel it and I do appreciate it, but friends are not partners, and friends are not family. My friends have spouses and kids and busy busy lives and I am not integral to their existence.

It's Saturday night and I am sitting alone with my computer on my lap watching/listening to a terrible little TV, with a "rabbits ears" aerial. There is an Agatha Christie mystery showing (I think that is what it is) but there is so much snow that I can't really see the features of any of the actors. I don't care 'cause I don't want to watch it anyway although I the soundtrack in the background fills the void in my room somewhat. My knees are burning (they've been hurting all day) and my left foot is cramping and in spasm, my left hip is throbbing as usual (there is other crap hurting but I'll only bore you with the more extreme issues). I'm worried about Christmas.

My family isn't close. I have two brothers both wrapped up in their own lives/families - my parents are dead. My relationship with my step-mother and step-sister has always been problematic. My sister-in-law, for a reason I have never known, has not spoken a single word to me since 1992 (I think it was because I was pregnant too). My other brother's male partner is a great guy and he and I get along pretty well. Not one of them is in any way interested in what matters to me. how I feel, what I think, what I blog about or anything else. They don't seem to place any value on my intelligence, wit, or insight. You know how you get labeled as a child in a family - "the naughty one", "the clever one", "the sensible one" -- somehow I was tagged as "the serious one" or perhaps "the boring one". On the rare occasions when a member of my family actually "hears" when I say something funny or witty they look at me like I have suddenly explained the physics of a black hole or sung an aria in Italian, because I am NOT "the funny one". (Strangely my friends and former coworkers have never had this same perception.) But I digress...

Recently I returned to Australia after living for 12 years in the US. Aside from my mother's death and my father's funeral I have pretty much managed to avoid all family gatherings. Mum and my gay brother used to visit the US and see me pretty often but mum has been dead now three years.

My step-mother is hosting Christmas. The email invitation came out inviting us all. Everyone's name was mentioned, in-laws and kids too, except mine but I know that was just an oversight - Freudian maybe, but not deliberate. My son was named though! So this motley crew is assembling at her house on Christmas eve, cause everyone except me has lots of other places to be on the actual day. It will be the first time I have been in the same building as my sister-in-law for over 19 years, the first time I have seen my niece and two nephews in at least 10 years, the first time I have seen my straight brother since my dad died 21/2 years ago, and I think it will be the first time we have ever ALL been in the same place.

None of these people have any idea how much FMS is bothering me, even my son doesn't really know, cause I always push so much harder when he is around, I always want him to see the best of me. I don't think either of my brothers even knows I have fibro, though I know I have told them somehow I don't think they really heard me. To be honest I don't think anyone in my family ever hears me. Except to chastise me for my failures, to dictate to me with advice that is not open to discussion, or to patronize me with superficial interaction I don't think they are interested in me at all. I am superfluous.

If I wandered off and none of them ever heard from me again would anyone give a shit? Would anyone look for me if I were kidnapped or wandering lost with amnesia? Would anyone visit me if I was sick in hospital? Aside from my son, the answer is no. I have not fostered or built these relationships, I carry the lions share of the blame, I have created my own irrelevancy. My mother was the glue that bound my brothers and I together, she was so happy when she was dying to see the three of us together getting along, but after she died we just went back to our corners of the world.

I feel unloved and unlovable and I don't know how I will endure this gathering and yet I could never bring myself to not go. I could not deprive myself of even this twisted a gathering of magnified dysfunction. Is it like playing with a sore tooth? Am I drawn to poke at this bruise that exists where family should be? Or is it like most things a mixture of good and bad, happy and sad, healthy and sick, understood and misunderstood, happiness and sorrow, pleasure and pain, love and hate...

I guess I will know more on Christmas Day when it is all over and I am sitting alone the same way I am now...