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I don't know if I will get better or not. That is indeed the big question. And its the one consuming me right now. I need to battle, scream, yell and fling myslef at this illness until I beat it, but there are two ways it could go. I could spontaniously get better soon, go into remission as it were, or this could be it, this could be my new level, and I have to adapt, learn to cope, figure out how to deal  with this amount of physical strength I have now.
I hope to return to better than I am, but hope is a funny thing. It can only exist in the presence of fear. If I wasn't afraid of the bad outcome, I wouldn't need to hope for the good one, I'd simply know. And the hope-and-fear are atrophying me. I don't see a clear path through the dangerous swamp ahead because I don't know which of the paths I see ahead of me will be the real one.

I've been thinking about it, and one thing I particularly fear is that, if anything, I've been misleading the doctors. I keep talking of 'massive attacks' where my symptoms get suddenly worse, followed by improvments and steadying out. But I bought myslef my first disability aid yesterday (more on that later) and it really set me thinking. I've been so busy telling doctors about the worse times and the better times, but what I'm really telling them about is not the underlying illness but my coping skills and ability to adapt.

When this illness first hit I fell apart, and played up to it, and say 'I can't' a lot. The doctors on exam would ask me to squees thier fingers and I'd go 'uhh' and do something pathetic and not try becasue I was terrified by this sudden loss of mussle strength and needed them to see how bad it was, and they saw my lack of effort and wrote me off as a fraud. but it only took the first 6 weeks or so before I decided, fuck, I'm going to beat this thing, and began to find ways of being strong again. But I was already not seeing the doctors any more.
This time around in the hospital I didn't do that. When they said 'squeese my fingers' I'd enjoy the chance to cause some minor discomfort to the doctors in return for all the discomfort they caused me, and from that they were able to see the illness more accuratly - a mussle weakness that is profound in my upper arms and legs but does not affect my lower arms and legs when I'm lying in a position that my sholders or hips are supported. I've been telling them this ALL ALONG, I can knit but not reach something down from a shelf, ever. But of course nothing I tell them has any validity until they can see it for themselves. And then still not.

And so, the question becomes, did I get over the loss of strength the first time not because I spontaniouly 'got better' but because I learned not to put items I need often on high shelves, and not to reach up, but to stand on a stool to get it down? And so my illness stopped being visible. Because if I'm not trying to do something I can't then there is no visible illness. Normal adjusts to what I can do, and then my life becomes 'normal', I don't have to see myslef as a sick person, and all importantly, others don't have to see me as a sick person.

I think in particular about the first year I lived here in England. That was the key time that I felt 'in remission', that I talked about (wrote here in my journal about) being OK, all the neuro stuff dying down. But as I think about it, I can think about a million adaptions I have made. What was significant in that year was that, on moving country I had no choice but to re-write my life, and did so based on my capabilities, and so created a life without physical strain.  I took a consious decision when I moved over that I may be living in the heart of London, but I would not try to go and see any art gallaries or museums, because thats the kind of walking that triggers the weakness fastest. I met friends in hiking dykes, but laughted when asked to join. I leared to shop on the internet as I can't do supermarkets. I bought all kinds of different gadgets for the kitchen to accomodate the things I cannot do. And slowly, insidiously, almost beyond my notice, the tremor spread from my right to my left, the weakness from my hips to my sholders, and all this migration where the illness colonised new areas has happened NOT when I've been in a 'massive attack' but during the coping times, where I've adapted at the same speed and not let it interfere with daily life, and not gone running to doctors saying 'its getting worse, its getting worse'.

But now the illness has hit a critical mass point. I cnnot walk without walking aids. I cannot do simple things like shower or cook food without massive difficulty, and its been time to take my head out of the sand and yell for help - a help that has not been forthcomming. But even in yelling for help I've been going out of my way to tell the doctors 'because this has happened before, I know its only temporary, simptoms will not go away, but they will lesson off again'. But what if they don't? What if the only change in the past has been me coping, and the only change in the future will be me coping?

And so, yesterday, with fear and horror and disbelief at what I was doing, I ordered a 'perching stool' over the internet - a tall stool with a sloping seat for people who are 'less able to stand' to lean on when doing kitchen work and so still carry out tasks at a sink or counter. And I can't help but wonder - will this be the new remission? Crutches and wheelchairs and perching stools? Because up till now my mantra has been I'm not disabled, just a little differently abled. And what of the future - do I move house, install grab bars by my shower and toilet (ever tried to wipe yourslef when your legs won't lift you the inch you need from the toilet seat? I really need a grab bar for beside the toilet right now) And so, I think of coping strategies, but they all involve major changes I can't aford, like moving house, or items like grab bars that are unambiguously disability aids.  And I'm not a happy camper right now.

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farnam

April 2011

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