I wrestle the bags slowly and painfully into the truck. The polymyositis jumped into my arms this year. But this summer in the heat its become crippling.
But damn it to hell I look fine.
A woman made a comment to me recently as we waited in line to register my son for school. The longer we waited and stood still, the more jello-ie my legs became. The are painful to force them to stand still. Too much fine motor skill needed....and not enough fine motor ability left in my muscles. I was pacing like a caged animal. I was in pain. I had just come off a 10 hour shift on my feet, I was still in my uniform. I was in agony.
From behind me I hear. "Be patient. It won't kill you to wait."
It was the way she commanded me...without asking why. I haven't yet found the words to stay to busybodies who butt in. I really wanted to say: 'gawd I wish polymyositis was contagious so you could enjoy this too.'
I want to take a moment and share three vlogs with you.
***jiggle warning *** * * * Heavy breathing warning * * *
If only life was all down.
So this is my first trip up the stairs.
This was my second trip up the stairs. Note how I have slowed down, my legs were burning and jello-ie all the way up. I kept stopping because I was so afraid of falling. You can hear my kids comments. Life is like that with invisible illnesses. but you look fine, how can anything be wrong?
I think I will follow my son's advice. Find paths in life that are up-less.
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