Saturday, 20 June 2015

Good Days

The other day one of my young friends asked me if I "ever had good days". I looked her in the eyes and said "No. Not really." This does not mean that my days are all bad. It means that I rarely have a day where it starts well, goes well, and ends well. That would be a good day. Nor does it mean there are not good parts to many of my days. In almost every day there is some joy, some happiness, some contentment; these are precious moments of light in an otherwise dark existence.

Let's start with mornings. I wake up slowly, my body taking far longer than my mind to reach a point where it is ready to function. Pretty much every morning I wake up with low grade pain in my arms, a feeling unsteadiness throughout my body, a desire to stay horizontal rather than fighting gravity with dying muscles in order to sit up.

Once I do finally sit up, there are clothes to argue with. I fling my dead legs up on the bed and fight on my compression socks. Since my legs don't work, I am compelled to twist and gyrate to get my underwear on, doing the same to get pants on. After finally sliding a shirt on, I am ready to face the transfer to my wheelchair. All of this, of course, assumes no bathroom duty nor shower nor Home Care Aide doing Range of Motion Exercises.

The start of every day is hard. Then, after come what may during my usual day, the end is just as difficult, the only reward of that struggle being sleep. mostly. On many nights sleep is slow in coming. My legs need to be moved repeatedly so I can get comfortable. Finally, in frustration, I will take a Zopiclone, a pill that puts me to sleep but ensures my brain is as slow as my body the next morning.

This is not to say there are not good things in my day. I live for those moments, sometimes even hours, when I can forget this disease. Writing my blog, cooking a nice meal, enjoying a glass or two of wine, driving my truck, spending time with Katherine, Kate, and all my friends; these are places I find happiness. When these happen, my days are not all bad.

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