NeuroTalk Support Groups - I just don't understand......

Quote:

Originally Posted by frogga (Post 108084)

Heya,

not being understood with this is really hard. I guess that with me my RSD is very obvious (wheelchair, carers, etc) and I have never not been believed - but there have been many times when I have been misunderstood.

I gave up trying to explain what is wrong with me to people - it get's too frustrating. Unless they are your best mates then they won't be overly interested in the specifics. I tend to not even mention I'm in pain most of the time because it's just not worth it. I just say that I was in an accident that set off a disease in my central nervous system which means I can't move properly anymore.

However my best mates know and though they cannot understand the pain they have learnt through experience what makes it worse and what makes it better (I'm VERY stubborn and generally do things that I know will kill the RSD just because I hate letting "it" win!

I wish there was a suggestion I had for letting co-workers know and I don't think there is one. This disease is too complicated to explain - watch there faces - when they start to switch off shut up and change the subject!

Take care!! Love
ous
Frogga xxxxxxxxxxxxx

Frogga, you said it so well here.. That you were in an accident that set off your disease in your central nervous system which means you can't move properly. I think this one is short and to the point. I just say, my nerves get all excited and are jumping around like hot wires. Anyway, I will use what you say when I have to explain this dreaded beast to others. thanks, Frogga!:hug: Love, Desi