Saturday, 23 July 2016

Aches And Pains

The whole region of my left shoulder is hurting me today. Right under my ear the muscle cramp begins. It's not a tight cramp, just a sort of slow binding which hurts when I move it. The pain sort of slides down my neck and into my shoulder muscles, further making its way into the upper part of my left arm. The whole area is reluctant to move, aching with every clinch and twitch.

I don't think it's the way I slept. Nor do I think it's the amount of time I spend in my power wheelchair yesterday versus my manual chair. There is no individual action to excuse away what is happening. This is just another reminder of the slow muscular deterioration which is going on in me. It's ALS, but it looks like it could be so many other things.

In fact it actually could be other things. But how would I know? How do I tell when an ache or a pain is simply part of life, or part of ALS? There is no distinguishing marker, no sign that this is different than that, no way of determining if this is progression, or just getting older, or how I slept, or anything else. In the absence of further proof, I will just go with the disease. Eventually it's always the disease, if not for today, at least for some day in the future.

A friend of mine asked me what I would do if a treatment were suddenly discovered with could stop the progression. Existing dead motor neurons would remain dead, but no more would die. It's a tough question. Right now I am living a fairly decent life. If I were to remain this way, I could probably live with it. On the other hand, I am coming to a tipping point, a place in my life where I probably wouldn't want to remain. Then it would be a tougher decision.

It's not just the state I am in now that matters. It's the ongoing progression, the clear and present proof that I will get worse. It's not just the loss of muscle strength, it's the aches and pains that go with over-working what I have left. If the disease were stable, would I have to live with this pain and soreness for the rest of my life? If this disease were stable, would I be able to strengthen those muscles with still worked?

Of course, it doesn't really matter. This is mere speculation. I doubt there will be a treatment in my lifetime, let alone a cure. No, I suspect progression will remain for me, the black demon on my horizon, forever approaching, forever destroying. It does no good to think otherwise.

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