Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

 
 
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Old 01-26-2014, 02:27 PM #10
anon6715
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anon6715
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Hi Allanira. I hope you got some rest and, dare I say it, even some sleep this weekend. I have a hard enough time just working full time, I can't imagine have to take care of two little kids with this stupid disease.

I know what you mean about being judged. It just sucks. I look fine too. The physical signs of my CRPS are pretty slight - a bit of swelling and a bit too much hair (but since I'm not very hairy to begin with, the amount of hair on my right arm could be a normal amount for someone else). I take public transportation to work every day and I am constantly dodging people because, as you will know without me saying it, I really don't want to be touched. Of course, to everyone else, I must just look strange. It is London, people bump into each other without even noticing it and here I am dodging like a lunatic.

And then there's work. Everyone there understands the Equalities Act and they are all about diversity. But they have never heard of CRPS/RSD. Who has? When I first returned to work my hand was still very, very swollen and I could barely move it. Now, they see it *looking* so much better and moving, not normally, but still better than before. And they all think I am doing so much better. Of course, the pain is still horrible and I know that if I tried to accurately describe my pain to them, I would just sound like a crazy person. But the reality is, I can't be as productive as I used to be even though I look fine.

Try not to worry about what other people think. They have no idea how amazing you are for managing all that you do. But we do. You rock!

Kim
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Brambledog (01-26-2014)
 


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