Thursday, 15 October 2015

Energy Requirements

I'm up. I'm moving about. I've had a bowl of cereal and a half cup of coffee. I'm even partly dressed; I managed to pull a shirt over my head. It's 4:00 PM in the afternoon and I am finally feeling lifelike. That's the thing with ALS; it leaves you constantly tired. I know one pALS online who regularly posts his nap schedule. He naps a lot. I know other pALS who seem to be able to withstand a longer day on a consistent basis. I envy them.

This doesn't mean that I cannot get up earlier. In fact I do, every Monday, Wednesday and Friday. Those are the days homecare arrives at around 10:00 AM to help me shower, and to do Range of Motion exercises with me. Nor does this mean I cannot do a long day now and again. Just the other day I did the 11 hour run from Vancouver to Calgary in a single go. I just means that, given my preferences and no other immediate requirements, I would sooner stay in bed and sleep the day away.

I suspect all of us have had those kinds of days, those lazy days where sleeping the day away seemed the finest and best use of time, those kinds of days where doing nothing seemed like the most that was possible. Even the most energetic of us must get those days, those days where their energy seems to take a break. The challenge I have is that each day is one of those days.

There is an upside to this, however. There is a certain freedom in knowing that if I am tired, I can rest. There is a wonderful sense of luxury in letting myself sleep, instead of forcing myself to get up. My reality is that once I am up, I just keep going. Once I am active, sleeping is always on my mind but need not take up a lot of room up there. Once I am headed into my day, it's not often that I head back to bed. Just some days.

Last night I dreamed about work, about missing work. The dream had elements from all of my past work life. I can vividly recall the part of the dream where I asked my old friend and one time boss to give me a work assignment. In my dream he said I was not terrified of the alarm clock. I asked him to give me some work that terrified me, that would keep me awake, even a small coding assignment. Then I fell asleep on his briefcase. The dream had lots of other weird stuff in it, but that quote stayed with me after I woke up.

I guess I am no longer terrified of my alarm clock. It isn't even set, nor has it ever been. I just don't need it anymore. When I have to get up, I manage to get up. Other than that, I sleep. I don't see how you can beat that. I just wish I had more energy.

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