Friday, 18 April 2014

A Bad Arm Day

It looks like there will be no more "going vertical" for me; I may, with mechanical assistance, be able to get up onto my legs, but without it, I doubt it. This morning I tried, when putting on underpants and pants, twice I tried. I tried to lift myself up on my ever weakening arms, to force my legs high enough where my knees could lock, to where I could use my dresser as the standing aid. Yet no matter how I tried, my arms were simply no longer strong enough. Perhaps this is just a bad arm day, like the bad leg days I was having 18 months ago.

I can feel the pain of effort in my left arm. It is not a small, nagging pain. It is soreness worthy of weight-lifting, the weight being lifted all my own. My right arm is complaining, albeit lightly, that it too was overworked in my last attempt at standing vertical. This muscle pain is not really a part of ALS; it arises because I still try, still work hard at doing the things I could once do easily. If I did not try, I would not hurt. I will not give up, nor give in. I will just do what I can for as long as I can, and when I can no longer do it, I will no longer do it.

This will change the way I approach my mornings, and perhaps my whole day. In my past life, I would get up in the mornings, use the bathroom, have a shower, and then get dressed. With the loss of my verticality, this would mean getting out of bed and then lifting myself vertical with my arms in order to don underwear and pants. Now, with the inability to get vertical, I will have to dress myself on my bed. I could keep my old routine, but that would mean an extra trip, an extra transfer from my wheelchair to my bed. That extra work, combined with the sweat raising effort of putting on clothing, is enough to finish me for an hour or so.

I need to think strategically, using tactics which will minimize the work effort of this daily task. If I shower at the end of the day, it will mean only one transfer into bed. When I get up, clean from my nightly shower, I will simply get dressed right away, avoiding that extra transfer to and from my chair. In some ways it makes a lot of sense to shower at the end of the day instead of putting a dirty body onto clean sheets at night. I know some people who shower both in the morning and at night; that would be too much for me to do.

Every day, something's got to give. Every day, I need to think about my energy levels, the work which I must do to live, and how I am going to do it with minimal effort. This disease not only challenges your body, it challenges your mind, your habits, your routines, your expectations. It challenges everything.

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