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.
The turgid, tortured tales of a middle-aged (if the average person lives to 99), somewhat disabled lesbian -- Sometimes amusing, sometimes whining, sometimes ranting, but ALWAYS thinking!
Tuesday, 28 February 2012
Sunday, 26 February 2012
If I wasn't lying down I could sing "I'm still standing"!
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!)
Tuesday, 21 February 2012
I need some help...
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!
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!
Monday, 20 February 2012
Should... Who says?
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!
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!
Thursday, 16 February 2012
My itchy bitchy heart...
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!!!"
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!!!"
Tuesday, 14 February 2012
Valentines, war and musings
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.
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.
Sunday, 12 February 2012
Perceptions of ability within disability...
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?
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?
Monday, 6 February 2012
The things I can write..
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!
Wednesday, 1 February 2012
Rump pain and pain rump (Unsafe for vegetarians)
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;
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!
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