Tuesday, 8 December 2015

I'm Tired Of ALS

I awoke this morning after 12 full hours of restful sleep. It was a normal kind of morning. I awoke with sore muscles, my hands shaking like mad, and the mere effort of sitting up made me tired enough that I wanted to go back to bed, to sleep once again. Yet I persevered, got out of bed, got myself a coffee. Here I am, ready to share my story once again.

The trouble is that it's the same old story, only worse. Nothing ever changes with this story. Every morning I get up shaking, weak, sore and tired. Every morning I force myself to get going, to get out of bed, to get mobile. Every morning I come to this keyboard to share the story of my life. It's getting boring. I need something new to happen, something that has nothing to do with ALS.

There's the rub. Everything in my life is touched by ALS. My eating patterns, my sleeping patterns, my activity patterns, even my bathroom patterns. There is nothing in my life free from this. The only true variation is that I get worse and worse every day; not a lot, sometimes not even enough for me to notice. But it's happening. I can feel it. I can sense it. I know it.

It's even more noticeable if you look at it in the broader scale. Three years ago I slept a normal night for most, somewhere between 7 and 8 hours a night. Two years ago it was 10 hours. A year ago it was 12 hours. Now I sleep for as much as 14 hours a night, sometimes more, sometimes less. My up time has completely reversed from normal life. Three years ago I could walk. Two years ago I could dance in my wheelchair. A year ago I was able to push myself up the driveway from my apartment. These days, the hallway is a long effort.

Feeling tired all the time is the worst. I never get away from it. I never get a chance to feel refreshed and empowered for the day. I shake more when I am tired. My eyes don't focus as well when I am tired. I don't feel like eating or drinking when I am tired. I'm tired of feeling tired. This sucks.


  1. Its the endless weariness that gets me down ,today up at 7 after 12 hours sleep ,shower and dress ,exhausted back to bed ,richard i look forward to reading your words every day ,makes me feel not quite so alone with this relentless monster

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