Tuesday, 7 October 2014


I like to keep a full calendar, to have something in each day that gives me a reason to get up and go. I've always said that the first step in dying is not getting out of bed; I get out of bed each day, even on those days when staying in bed seems like the best thing to do. Having something booked everyday helps.

Today is a good example. Once again I had a bad night last night. This inability to sleep at nights is fast becoming thematic for me. I go to bed, I doze on and off, and finally, sometime between 4:00 and 6:00 AM, I actually achieve slumber. After nights like these, getting up in the mornings is tough. Now add the absence of something in my schedule, and I have no reason to get up and get going. So I stay in bed; today I finally got out of bed at 2:30 PM.

When I am in bed like this, I rest. Given that ALS leaves me in an almost constant state of exhaustion, the idea of rest is continually appealing. At any given moment, I am fully capable and happy to lay my head down and simulate sleep. Of course I am actually just resting, dozing and lazing about, until I need to get up again. Today, I did just that.

Now that I am up, I will sit about, have a shower, watch some TV and generally do nothing. Then, at 6:00 PM, I will head to the Unicorn Pub for my trivia night. I will stay out until about 10:00 PM, then come home and go to bed, perhaps after reading for a bit. By midnight I will realize that sleep will once again be slow in coming. I will close my eyes and rest, continually rest, until slumber arrives.

It's not much of a day, but at least it has something in it. I will see my friends tonight and enjoy a social evening. That's enough to get me out of bed today. That's all it takes; a bit of life in my life. But I am going to talk to the doctor about a sleeping aide.

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