A Confusing Disease

ALS is such a confusing disease. The complete loss of linkage between your body and your mind makes for a lot of conflict when your asked how you feel. Of course my standard response is "Okay", but the reality is that I am constantly in conflict about how I feel. My brain feels fine, my body varies. One part feels okay, another feels terrible. One part works, another doesn't. And then there is the conflict of physical exhaustion versus mental exhaustion.

This morning I got up and struggled to defeat my physical exhaustion. I'd had 10 hours of solid sleep, except for the required nocturnal micturations, plus I had a nap yesterday evening of a couple of hours. Yet my body fought to become functional. My mind, however, was ready and alert, all set for a busy day. My body felt like it could bare move when I tried to transfer to my wheelchair, yet my mind was racing ahead, thinking of a dozen different things.

I got into the bathroom and into the shower. There I noticed that I was feeling particularly solid in my trunk muscles, showing almost no wobble while sitting in the shower. I actually showered without holding on to the safety bars. Maybe my body isn't so tired. Maybe I'm actually going to have a good day!

Then came the transfer back onto my bed and the effort of getting dressed. By the time I was done this, my body needed a rest, but my mind was just fine. I was awake, and exhausted. Exercises followed, further tiring my body while giving my mind lots of time to think about things. When exercises were complete, my body wanted to sleep, but my mind wanted to get going with the day. So I forced myself into the transfer and wheeled into the kitchen.

Right now, as I write this entry, I could easily fall asleep. Not because I am tired, but because my body is tired. My mind is awake and active. The outcome of this is that I would go lie down, and while my body would be resting my mind would be wide awake and active. Bed, without sleep. And that's why this is such a confusing disease.