Annie, my family spent alot of time crying holding me and wondering why all this was going on, they were very supportive and loving and still are nearly nine years on, Iam very lucky.

I feel for you about people being sooooo dismissive as they don't we know our bodies. I have learnt to take on board what people are saying and then telling them what I really am trying to get across to them, I think this helped with my neruo, when he realised I wasn't dismissing him we clicked. But this of course does not always work and we do come across as whinging, where as I am just scared and sick and tired of being dismissed, one day I recon I'm gonna explode, and people will say "there we told you you were depressed and not a good patient"

I don't know the answer when people don't listen, I just keep plodding on. Ie a very young Dr kept inisting I take my mestinon, I kept saying not on an empty stomach, but she kept jumping in and insisting, I said ok bring me some dry bikkies and I'll take it. Her concern was I would go into respiratory failure, mine was I would start vomiting again.....but we got there in the end, I hope I made her think a little, she certainly made me think how to go about getting Drs to understand me