Sunday, 6 July 2014

Day Of Rest

Today is my day of rest. It's 1:30 PM and I am still in bed, having just awoken not more than a few minutes ago. I have no appointments today, no meetings or engagements. There are no home care workers coming today, no Rosa. I have no company visiting, no plans to go anywhere or see anyone. There are no greetings planned, no good byes to be said. The elevator is broken in my building, so even if I wanted to go out, I cannot leave, at least not easily.

Last night I went to bed at 11:30 PM. This means I have slept some 14 hours straight, with the normal bladder driven interruptions. Even as I write this, slumped up against the pillows behind my back, my eyes creep towards closing, lids heaving, wanting to take me away to slumber once again. This tired state is a fact of life for me; no amount sleep or rest sees me awaken refreshed and energized. I am dogged constantly by exhaustion; not the exhaustion of a body well exercised or a mind will worked,  it is the exhaustion of ALS.

I will get up today. My expectation is that someone will come to visit, or at least to check in on me. It happens often, that my friends show up or call to see how I am. I am never really alone, at least not for long. It is one of the things that drives me to get up, even when my body says stay in bed. Having a life means I am compelled to live it; having things to do and people to see means I must eventually get up and get going.

This day, this long morning into afternoon spent sleeping, is something I don't often get to do. It will be gone tomorrow as a care worker come to stretch my dead legs. It will come on Tuesday, Wednesday and onwards as my activities of daily living fill my schedule. It will come again, I know this to be true. Soon I will have another day of rest. One day I will have more of them than I want. I do not wish for them; I know they will come.


  1. You are lucky to have such wonderful friends. I doubt my friends would visit me. I would be alone.

    1. MIchelle, you never know until you get there just who will be with you. Some will be there that you did not expect. Others that you expect will not be there. It's just the way things are.