19 Hours Of Sleep

I'm up. I'm almost awake, sleep still tugging at me, encouraging me to go back to bed. I've needed a lot of sleep these days. Yesterday I got up at 11:00 AM, did my morning routine, met with my Home Care Nurse, and by 4:00 PM I needed a nap. That nap turned into a four hour sleep, after which I decided just to stay in bed and call it a night. I dozed on and off until about 11:00 PM, then slept solidly until 10:00 AM this morning. So all in all, probably slept about 18 or 19 hours yesterday. And here I am, still wanting sleep this morning.

The exhaustion that goes with ALS is pervasive and persistent. I never really get ahead of it, regardless of how much I sleep or how little I do. It has a lot to do with the increasing weakness with which I live. When even the smallest of things becomes difficult, when weakened muscles are forced to work harder to accomplish the ordinary, you just get tired more quickly. The exhaustion of ALS is no mystery; it happens because I work so hard to do that which once was easy.

This morning is a great example. While I could probably sleep for several more hours right now, I had to get up. I had Range of Motion exercises. The Home Care Aide was here to make sure my joints don't freeze and my muscles remain flexible even though they are dead. Those exercises, even though I am aided through them, wear me out. They are simple exercises, with someone else bearing more than half the load, yet when I am done with them I need a rest.

Then there was the incident with my breakfast cereal. I forgot to eat yesterday, so I am hungry this morning. I don't feel like cooking nor am I up for prosciutto and Swiss cheese. So Alphabits it is. I grabbed the brand new box off of the top of my freezer which, thankfully, I can still reach. I noticed the box was unopened, and my spirits fell a notch. I knew it would be tough to open, and it was. But I got there, managing to find the crack in the sealed top.

Inside the box I was presented with a thoroughly sealed wax package, the kind breakfast cereal comes in. I tried to tear open the pouring end, and failed. I am not strong enough to simply rip it open. That's new, and unfortunate. So I tried opening it from the middle of the package, knowing full well that it would tear downward instead of along the seal. It did, so I took the open tear and used that to continue separating the sealed part, right until I got to the end where I could make a pouring spout.

This was not a major effort. There are very few things in my day, in most anyone's day, which are major efforts. Yet this minor effort took much more out of me that it would most other people. Add a few more of these minor efforts and it looks like a real workout. That's why I am exhausted all the time. Dressing is a marathon race, going to the toilet is like pushing a broken lawnmower, reaching up and down takes all I've got. And now, I want to get back into bed already, despite almost 19 hours of sleep.