Since when did bed linens get so heavy? I noticed it today, when I got out the clean bed linens so the Home Care Aid could make up my bed. Those sheets and pillow cases weigh a ton! Actually, the weight of them probably hasn't changed at all. It's my strength which has changed, my ability to pick them up and carry them. That's what's different now.
ALS is like this. It sneaks up on you, incrementally decreasing your strength without you really noticing, until you do something that you haven't done for a while. Then, suddenly, you realize that your body really has changed, that you really can't pick up that stack of sheets and pillow cases, or at least not without some substantial effort. Then you get your surprise.
We did my first round of Range of Motion stretches for my arms today. This was another surprise, although not as much as the linens. I have known for a while that my loss of strength has impacted my upper body flexibility. I've felt the increasing difficulty in lifting my arms above my head; I avoid it these days. I've felt the pain of a frozen shoulder increasing as the weeks have gone by. I knew it was getting worse.
The exercises proved what I suspected, only it was worse than I thought. Even on a flat surface, laying down with no load on my arm muscles, I was barely able to rotate my arms into a vertical above my head. Remember, I wasn't lifting them in the air, I was rotating them while laying flat on the bed; no weight on them. Yet still, my muscles screamed at me, my shoulder joint raging in pain, as I attempting the final third of the full upward rotation.
By the time we had done this two or three times, I could complete the upward rotation on the flat. Then we tried another angle, where I rotated my arm as if in some bizarre Nazi salute, except the attempt was a full rotation. I managed to make it most of the way, but I still looked like something out of a bad war movie. It hurt, too.
These two activities demonstrate the two parts of this disease. You can see the change as it happens, but you don't really realize it's happening until you get there. Along the way you make little compromises, like only picking up the bottom sheet, then the top sheet, then the pillow cases. Along the way you limit yourself to what doesn't hurt, like not making a Nazi salute, or better yet, not reaching for the second shelf in the cupboard.
Slowly but surely you do less and less, until you can't do anything at all. That's how ALS works.
So very true...one cannot understand this until one lives it....
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