Sunday, 14 August 2016

Energy Loss

I'm up. Barely. It's a close run thing today, me getting out of bed. I am exhausted, really tired. This is one of the biggest changes I have noticed in the last year or two, my energy level. I just don't have one anymore. Pete Seeger did a song where he lamented; "How do I know my youth is all spent? My get-up-and-go has got up and went!" I feel that, like all kinds of others my age, only it's worse, more dramatic a loss.

 I used to have lots of energy, even in my first couple of years with ALS. I could go on day after day, seemingly with only limited sleep. I could do social engagements five or six nights in a row, and still have energy for life at home. Now, alas, it is no longer so. I went out to watch meteors on Friday night, went to a BBQ party yesterday afternoon and evening, and today I can barely function. My eyes are screaming at me to close, even as I sit here and type.

It's tragic to think that my favourite activity of late has become sleeping. I'm like a very old man who simply wants nothing more than to rest, dozing his days away in bed. Yet even so, here I am, up, typing, soon to dress and do at least something with what remains of my afternoon. My brain does not believe that my body can be this tired, this easily worn out. My brain and body have this clear disconnect, this plain disagreement on what I can and should be able to do. My body is winning.

It's much more than the larger picture. While at the BBQ yesterday, we were playing charades. While this is admittedly not my favourite game, I was in. I was playing. I lasted for about two rounds, at which point my mind was in but my body was out. I lost the ability to focus. My breathing got difficult. My body did not want to move. After about 10 minutes of low impact activity, I was done.

I did recover. It took about a half an hour. By this time the gang wanted to play a different game, one where using your mind and wit was more important. I did really well with that, participating, engaged, talking, laughing. The only thing to wear out was my voice; it's not as strong as it used to be. I did fine, as long as my body wasn't involved.

So both on the large scale, the scale of daily life, and the small scale, the scale of a game of charades, energy is my issue. It's as much a part of the losses of ALS as is the wheelchair, the arm strength, the core muscle loss. I need to rest more. So I cancelled out of the picnic I was going to this afternoon. I just can't do it anymore.

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