Thursday, 7 September 2017

I Can Still Breathe

I slept yesterday, all day. I got up in the morning to go to the bathroom. I took my pills. My HCA dressed me. Then I went back into bed and stayed there until just a few minutes ago. Yet here I am, still sleepy. It seems that sleep is my greatest need these days. I didn't eat yesterday, and didn't mind it. I didn't have anything to drink yesterday, yet I still peed about 2 litres. I did no exercises, no movements, nothing. So why am I tired right now?

Maybe I am fighting an infection. Maybe this is just ALS having its way with me. I can't tell. Nobody can tell for sure. I can get tested for an infection but often the tests don't pick up the minor infections that can make me feel like this. It has to get serious enough to where I have a fever before it really shows up in blood and urine tests. Then again, the weakness that I feel is another part of the disease, so maybe that's it.

The problem here is the minor nature of change with ALS. This can happen, then sort of settle down, then happen a bit more, and so on and so on, until a significant event happens to prove the process. For example, I noticed yesterday that my arm seemed heavy, that lifting a pillow across the bed was very difficult. I've noticed the creeping weakness in my arms for a while, a couple of years really, and now it is truly noticeable.

So when I say I notice that I am having jaw issues, this is not a simple perception. I noticed on Monday that I had trouble opening my mouth wide enough to eat a sandwich. It was not a particularly large sandwich. My jaw just isn't as strong as it used to be. Lots of people might dismiss this, saying I always bite off too much, or maybe I was just tired, or that happens to all of us once in a while. What doesn't happen to all of us is the daily incrementalism of ALS. Soon my mouth won't open wide enough for food, my arms won't be strong enough to life themselves let alone a fork full of food or a pillow. Soon I will lose the ability to drink a sip of water.

Until then, I will eat what I can, drink what I can, and hope this exhaustion passes at some point today. That's as good as it gets. At least I can still breathe.


  1. It would be my hope that one day your blog could be used as a manuscript for a documentary or a movie about ALS. I swear to God, I look forward to reading your blog like I look forward to the next episode of Ozark. Sometimes humorous, sometimes sad, sometimes dark. It may not be your intent, but your blog is powerful to those reading it. Taking them on an emotional ride with you. Anyway, I'll stop rambling. Feel well sir

  2. Well said Greg, and so true.