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

Lol. Yeah. People do the same to me with the wheelchair thing. I finish explaining and they are like, so your in a wheelchair because....?? They sometimes think I'm paralyzed. I was kinda shocked when my friends came up and asked me if I was paralyzed. My brother actually thought so for awhile too. He still doesn't have much of a clue of what's wrong with me. He just knows I broke foot a year ago, something is wrong with both feet now, and I can't walk. Such a smart 7th grader...... yeah. I'm still working on how to explain it to him. Can't use a stupid explanation, but I have to simplify it and make sure he pays attention to the story. I'm never again gonna try using big words to explain it to him. He was giving me the funniest faces though.

BTW, does anyone have any way to explain it to a younger brother in the 7th grade in a way he will understand?

Try explaining that your nerves are overactive, and constantly send the wrong messages to your brain saying "pain".

To quote frogga:
"my joints don't work properly because the movement parts of my brain are over written with pain signals so my nerves don't send out the right messages."

Maybe your brother could understand that?

Or do you think he could understand some of what DayDreamer said?

How old is he? I have siblings and some understand. Reading this might help:
http://www.rsds.org/pdf/Recog_Undrstd_TreatRSD_530.pdf
(I am actually going to print some of these out for other people)

Also came across this:
http://www.rsdescape.com/RSD%20In%20Children.htm