Monday 31 October 2016

Tired Again, And Again, And Again

I'm tired. I start so many of my days like this. I felt pretty good when I woke up, certainly ready for my shower and exercises. Everything in the bathroom went according to plan; even my shower was warm and uneventful. When I lay down for exercises, I felt good, ready to go. Then we did exercises.

It's hard to understand how exercises where I do so little can leave me so tired. The first part, my arm exercises, are certainly mine to do. But my leg exercises are performed by the Home Care Aide. I am simply a ride-along, a passenger in the process. I do only a few minor things during the Range of Motion exercises for my legs, things like holding onto a leg while the HCA adjusts the other leg; nothing heavy, nothing particularly difficult.

Yet when I am done, I am exhausted. I make the difficult transfer to my wheelchair so the HCA can make my bed and tidy up my bedroom. I come out to the kitchen table and think to myself, "I should get myself a cup of coffee." I don't do it. I just sit in my wheelchair, my eyelids getting heavier and heavier by the minute, the sense of drowsy spreading throughout my body.

How is it that I can be so tired? I get more sleep than anyone I know, except for other PALS. I do virtually no physical activity, or at least no strenuous physical activity. I don't walk, step, climb or run. I don't push, pull or lift beyond the smallest of things. But here I am, after having someone else do all that work for me, ready to go back to bed, ready for another two or three or four hours of sleep.

If there is anything truly unfair about this disease, then this is it; that my body demands so much sleep and offers so little in return. I am up to 12 hours per day minimum, often sleeping more than that, particularly if you count the hours I fall asleep on the couch watching television. It's getting worse, this exhaustion. Soon even the modest efforts I make will be too much. I will be too tired, again.

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