Sunday, 30 July 2017

ALS Exhaustion Is Different

I am exhausted today, both physically and mentally. I'm not the kind of exhausted where I simply don't get out of bed. That is a different kind of exhausted. This kind is where I ache in my muscles, where I am constantly on the edge of sleeping, where I really want to just doze off yet I can't. I'm on the edge of rolling about asleep, but lack the coordination.

So why not just stay in bed? Actually I did, up until 3:00 PM. Mostly. I've decided recently that when I get a day like this, regardless of how tired I am when the Home Care Aide shows up, I am going to get up, use the toilet, and allow her to get me dressed, perhaps with the exception of a shirt. Most importantly I will have her put on my socks and a light pair of lounge pants, the ones that look like pajamas but sort of aren't. Then I will go back to bed, back to sleep and rest, until my mental state forces me to get active.

That's the thing about this particular kind of exhaustion. My brain recovers far more quickly than my body. Once I get up, I can feel my mind dissolving out of sleep, grasping onto reality. Yet my eyes have trouble focusing, my hands fail at coordination, my movements are slow, cumbersome. So I am awake in one sense while asleep in another. It's a very strange feeling. Coffee does not help.

How I get to feeling this way is completely unpredictable. I had a busy day yesterday, but I went to bed at about midnight, not unusual for me, and slept right up until Olga arrived at 10:00 AM. Admittedly she was a half hour early; that's not enough to drive this feeling. Maybe it was doing two things yesterday instead of one; I did the laundry, with help from Kate, and then folded and put it away. Maybe it was all the company, Tonny making me breakfast in the morning; Kate, Phil and the boys stopping by for dinner, mostly made by Kate.

I just don't know why I go through these days. It's not necessarily the wine; I had nothing yesterday. It's not necessarily the work; there are days when I do a lot and end up feeling energized by the accomplishments. It's not necessarily the sleep; yesterday I napped between Tonny's departure and Kate's arrival, a nap of some four hours.

All I know is this. The kind of exhaustion I feel, this disconnection of body and mind, this full body ache, is a part of having ALS. PALS everywhere talk about it, about the way it slows them down, about how much it affects their quality of life. I am no different. I\m tired, but not in a way that makes any sense to those without this illness.

1 comment:

  1. Finally! Someone that understands! There are times when I'm okay and times when I can't keep my eyes open for anything. When I am able to go to sleep, the body sweats and pain from shivering wake me up. One of the greatest woman I know came to visit last week and I slept through most of the visit. I felt horrible!