January 25, 2010

Morosely malingering, or, How I wish there was a big sign saying I have MS

Lately, I am feeling as if I am being accused of malingering. My doc refuses to renew my medication (or forgets to), my forms are slow in getting filled out. People express amazement that I am not working, or that I find it challenging to walk, or that I frequently accomplish little all day. When I can walk without my cane, I choose to (wouldn't you?) - both for balance practice and because it hurts my arms to use it. And it's a pain. While I can still carry heavy bags of groceries home from the market, no one sees me collapse on the other side of the door, or how much it takes out of me to carry them.
No one knows of the deadly fatigue that overpowers me, sending me to sleep for hours in the afternoon, impossible to resist. No one knows of the pain I'm in almost constantly and how tiring that is to cope with. It's boring to go on about.
But it is vexing to be looked at askance.
Anyone who knows me well knows that on the days when I feel well, I am almost mad with glee, with plans, with hopes for the future. I apply for jobs, dream of a healthy life, get a bunch of things accomplished, exercise madly.
But those days are pretty rare nowadays. I look the same - perhaps more tired, a bit tubbier, but essentially unchanged. Only a trained eye can see the difference in my walk most of the time, as I struggle to keep up. Only I know of my problems with words, my need to focus on balancing.
So others expect. Even my MS clinic nurse, my medical providers - they expect me to be better.
How I wish I were.

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