A guilty blogger...

Forgive me readers for I have sinned --- it has been bloody ages since my last blog and it was a fair while between that one and the one before.

*big bloody sigh*  I haven't been reading many blogs either so all my cyber mates are very distant and unfamiliar at the moment...  I'm sure I need a boatload of hail Herbert's to receive absolution for these sins.

Tomorrow we are going to Sydney and I have been stressed to the max (a total female dog to live with) about the trip...  I can't wait to see The Boy and I talked to him for nearly two hours yesterday on the phone which was great.  I have assignments due for University so I will need to keep studying while away.  On top of all this I have been feeling like absolute excreta for the last week or more.  Roving muscle pain that refuses to respond to anything from massage to morphine has taken up seemingly permanent residence in my body. Quite frankly it just sucks, to be honest.

TLOML has been wonderful as usual but even she has not escaped my irritation and my moody, PMS'y, I'm sick of hurting, unreasonable wrath.  She's pretty good but isn't quite rivaling Mother Theresa for sainthood so there have been a few snappy exchanges.  Fortunately we do manage to get over it very quickly and we are forgiving of each other.

The weather here has become incredibly beautiful; brilliant blue skies, warm but not as hot and humid, glistening sea, lush green gardens and bush (from all the rain we were having a few weeks ago)... quite frankly if I wasn't so keen to see The Boy I would rather stay here right now than go away.  I'm sure once we are underway I will relax a bit and that I will actually enjoy it but it's kind of hard to think of traveling for pleasure when I have been so haunted lately.

So I don't blog because I feel like I am boring and grumpy and incapable of seeing anything in an interesting and amusing way... and then I lose touch and blah blah blah....  well there you go...

I will try to do better, I promise.

Fantastic fantasy

First let me make some excuses for not having blogged lately...  It is partly that I have University work to do, partly that I feel kind of boring with nothing to report and partly that I have yet again developed a mild obsession with genealogical research.  (Mostly I guess I am just slack).

Health check in - very VERY up and down... one weird thing that is bothering me is that I have a strange metallic taste on the tip of my tongue and about the bottom inch of my tongue ( to the tip) has altered taste sensation and feels odd and maybe is a bit numb.  I have been noticing this for quite a while but it has become increasingly irritating over the last few weeks.  My presumption at this stage is that it is most likely a drug side effect so I am starting to isolate meds and stop taking them (yes I will be good and taper etc).,  The good news in this is that the my new GP, Dr Sincere, has finally given me some better pain relief in the form of Tramadol and so I don't have to keep struggling on with the codeine which has always resulted in more irritation than benefit!  Even better is that the tongue issue was happening before Tramadol so I it is not the culprit!  Now I probably need to make it clear, before my loving and adoring fans become desperately concerned about my possible addiction, I try to get by with no pain killers most of the time.  This is just for the really nasty breakthrough pain when I just can't stand it any more.  I am NOT about to start any regular pain medication if I can possibly avoid it!

Shermie, my car, had a flat tyre this morning...  That was upsetting.  Fifty dollars later (and drenched) we are underway again.  I am going to have to re-register Shermie in my new state which is going to be expensive.  We also have a trip to Sydney coming up in a couple of weeks which will be a bit of a financial drain, so money worries are causing some anxiety.

The "Wet Season" has been living up to its name lately.  This little island has been washed and rinsed so many times in the last week that I think we are all growing webbed feet!  I can't begin to guess how many inches of rain have fallen in the last couple of weeks but it is LOTS!!!  This means that all the creeks are running like crazy.  Yesterday, Sunday, in spite of the rain TLOML and I decided (at her suggestion) to go and swim in one of the waterfall pools.  OMG it was so beautiful.  The water was cool but not cold.  We were completely alone for the entire time we were there.  I wanted TLOML to strip off and run through the bush and over the rocks like a wood nymph but she refused to oblige...(Oh well it was worth a try!)  It was sublime...  To have such a spectacular place, where the water has gushed for millennia, entirely to ourselves!

One of the many wonderful things about TLOML is her unquenchable sense of wonder, another is her unfailing appreciation of beauty, and a third is her truly deep rooted gratitude for the gifts we are given.  How fortunate we are to be Australians and to have places like this to experience and appreciate!

This is the spot but it was really full of water and the rocks in the foreground were submerged.

I am still totally incredulous that my life has taken this turn for the fabulous.  TLOML and I are going from strength to strength.  We have still never had an argument and the challenges that we have faced (that include some very serious stuff) have been external.  I can't believe this happiness is mine!  I am boring I say it so often!  Literally, (and I do know what that means) I can't believe it!  I've had a terrible string of stressful and difficult times in my life that began when I left Australia.  Ghastly relationships, financial ruin, the loss of my parents, developing a chronic debilitating condition...  The twenty-first century has not been easy for me.  I was incapable of seeing any kind of happy ending and I was resigned to the fact that it would just be a miserable struggle until I was done.  Quite frankly if I didn't have The Boy I would possibly have given up completely.  It is so often said that things happen when you least expect it and it could not be more true for me.  Suddenly I am in the best relationship of my life and living in paradise.  One of the reasons I don't blog as often as I used to is that I can't imagine anyone would want to read me going on about my incredible new life all the time, and yet my gratitude and wonder totally dominate my heart and mind.  Perhaps one needs to descend to the depths of despair (I love alliteration!) before finding a new source of light?  That said I'm still hurting, limited, and physically struggling, but so very, VERY, grateful for the gifts the universe (aka Herbert) has given.  Maybe pain is the shading that provides the rich contrast in the landscape of my life.

The ceaseless rain continues to fall and that's just fine!

Heigh Ho Heigh Ho...

It's off to Uni I go...

Oh dear, wouldn't you know it?

Here I am about to begin the second weekend workshop (there are a bunch of assessments tied to this weekend) and I'm sore all over.  It started last night, a bit like the voodoo doll stuff, randomly roving pains.  I drugged up at bedtime and was too tired to drive TLOML to work this morning.  I am pouting because this is the first time I haven't driven her down and picked her up since I have been here.  She took the car while I slept.

So now I am awake and all my muscles feel like muscles feel after they have had a really sharp cramp...  you know that feeling?  That tender ache that feels fragile and unstable?  It feels like at any moment the muscles might suddenly decide to screw themselves up like a Chinese burn and torture me just for fun!

I'm not sure what time I need to leave this afternoon.  It's TLOMY's early off afternoon so she will be home soon.  The dogger and I are sacked out on the bed wishing she was here.  We are a pathetic little pair.  I really should take the 3pm ferry but I am going to leave it for the 4.25pm - when I feel like this I can't take the extra hour and a half tacked onto my evening.  I'll also have to leave early to get the 9.00pm home cause waiting until the 10.30 would kill me.  Not much good am I?  Today 4.25 to 9.30 is already going to be too long away from horizontal.  I wish I could call in sick.

We have to do some kind of group presentation this evening and I am so unprepared...  As a group we have had minimal contact but one of the clever clogs has unilaterally decided we are going to do a role play and apparently she has a script running through her head... (can you bluetooth a script from one person's head to another yet?)  Oh well, it's a good thing that life is such a grand adventure - no doubt all will be revealed some time this evening.

This gecko on the lantern the other night was almost transparent...  You could see her belly full of the nighttime insects she was catching.  Unfortunately my phone is not quite a good enough camera to capture her perfectly.

Oh - I did manage to suck it up and get some real study done yesterday so I don't feel quite as guilty as I did when I wrote about my avoidant behaviour.  (I still haven't tackled the roman blinds though.)

I think this blog sounds disjointed and haphazard... unfortunately that is the way I'm feeling at the moment too.  I feel like I was built by a committee!

Feeling old... Defensive walking...

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...

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!

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"!

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!)