A Sleeping Experiment

I just got out of bed a few minutes ago, at 5:20 PM in the afternoon. Today was a kind of experiment. I wanted to see if I could out-sleep the constant exhaustion that seems to be with me, a part of living where I feel like I can sleep anytime, regardless. First of all, let me say that I did not sleep constantly during the day; I had periods of wakefulness, mostly shorter than 15 minutes, where I could check my phone, go pee into my jug, or read a bit of news. But almost immediately after even this small effort, I was ready to sleep once again.

At the end, the experiment failed thanks to my body. It demanded that I get out of bed to comply with that most base of physical needs; I had to go to the toilet. I got up. Once up, having done what had to be done, I have decided to stay up. After all, tonight is a Trivia night; I don't want to miss that. It's one of the highlights of my week.

What I learned from all of this resting and sleeping is that I cannot out-sleep the exhaustion of ALS. No matter what I do, whether it is 8 or 18 hours of sleep, I am still tired when I wake up, still wanting to go back to bed. Even now I find myself more than willing to adopt the idea of returning to rest on the mattress.

I won't. I've long ago discovered that since I am going to feel this exhaustion, I might as well live with it and keep going. I've also learned that there is a fundamental difference in being tired and living with exhaustion. I can function with this exhaustion. I can be very alive, very alert. When the time comes, tiredness will take me off to sleep. Exhaustion is simply that ongoing feeling that I need more rest, regardless of how tired I may or may not be.

There was one interesting by-product of this experiment. Most mornings when I get up, my first thought is one of disappointment at not having died in the night. It would solve so many things, take away so much difficulty. My body, however, will have none of that. What happened today that was interesting. was that this thought didn't enter my mind in the least. In fact, as I was sitting doing what I had to do, the thought drifted into my mind that I really didn't want to be dead, that I really wasn't ready to go yet.

It usually takes me quite a while to get this positive in my day. I usually need an hour or two to get past the feelings of disappointment with my life and living. Yet today, after all this rest and sleep, I didn't feel this way. Perhaps that is the lesson from this experiment, that I will feel psychologically better if I sleep more. We'll have to wait and see, to try this experiment again. That's how science works.