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 02-10-2007, 04:11 AM #14
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frogga frogga is offline
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Join Date: Nov 2006
Location: UK
Posts: 830
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Default ooops - stupid dragon...

Hey nimcjo

I love the wheelchair one - I have used that one before!!! (I get really ratty when you explain why RSD is, and then people look at me expectantly and go..... so you can't move......... WHY??? - or you're in a wheelchair.....WHY?)

I know we should all be educating everyone on the disease, but I just appear to be missing the evangelical ability to explain my illness to the masses and make them understand it...also... a lot of the time I don'r want tot alk about it...

I can't remeber if I ever told you the amputee story?

Lydia is one of my best mates, and before I went to uni we spent most of the time together. But I never really explained what was wrong with me - she knew I had RSD, really bad pain and couldn't really move (Spastic!) but that was about it... We were planning on going on holiday together with some more mates and attempting to search for a wheelchair accessible house....

.... we asked her dad for help... and discovered.......

.....................he thought I was only a torso!!! (I had explained that the pain was similar to phatom pains) ....."you don't need it to be wheelchair accessible, just put a baby sling across you and take Rosie's arms and legs off and carry her round the house!!!! then you can borrow any house!"

Well. after that one..........................I have always been a little better at explaining what's wrong with me to mates!!

You'll get your own style....I know I hate it but telling your mates is important - they are your best ally - mine can look at me and sort of tell what's going on and then change stuff so that either I can rest or participate etc... and they are going to be your "closest" supporters and cheer leaders..

Anyway! take care... and I still love the wheelchair one.. (when I arrived at uni they said "well it's only up 2 flights of stairs and 400 yards away!, can't you do that? NO, I CANT EVEN STAND SO THAT's going to be difficult!)

Good luck!!!

Rxxxxxxxxxxxxxxxxxxxxxxxxxx
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