Monday, 27 June 2016

ALS Vengeance

You never really beat this disease. It's not like cancer or other disease with the possibility of improvement or treatment. ALS always comes at you, relentless, unyielding, inescapable. Anytime you begin to feel good, normal, the disease finds a way to remind you that you are not normal. You are not strong. You are not going to beat it.

For the last few days I was feeling pretty good. I attribute a part of that feeling, perhaps the largest part of that feeling, to Katherine's return. It is no coincidence that she comes back and I feel better. For the last few days, I've felt like I could keep up with life, sleeping perhaps as little as 8 or 9 hours a night, spending my energy like I could actually recover it somehow. Then, last night, ALS reminded me that there is a price to pay.

After a terrific time in Edmonton, Katherine and I hit the road at about 11:00 AM. We grabbed a Timmie's breakfast and headed down Highway 2 towards Calgary. Within an hour, I needed a rest. We stopped at Red Deer and I slept in the truck for a half hour. We headed out again, detouring to Big Valley along the way. While Katherine got us ice cream, I fell asleep for a short nap in the truck. By the time we got home at 5:00 PM, I was completely exhausted.

I transferred to the couch right away, taking a few minutes there to write my blog and a short set of lyrics which I sent off to a friend. Then I fell asleep. Katherine needed some rest too, so she sat with me, leaned back on the pillows, and watched the news. I didn't get that far. I slept on the couch from 6:00 PM to 11:00 PM. I watched some of the late news and went off to bed, where I slept once again, this time from 11:45 PM until 10:00 AM. If you add it all up, that's more than 15 hours of sleep last night. And I am still tired this morning; I'll need a nap in a bit.

You just can't get ahead of the exhaustion. No matter how normal you feel, you are not normal. I am not even normal for a paraplegic! I am too often tired, too often ready to sleep, regardless of how much rest I have. And when I don't feel that way, ALS will come back with a vengeance, reminding me that it is in charge of my body, not me.

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