I got this with my extended family too.... I do not understand why you wouldn't want to look up something that was causing your sister/daughter/dughter-in-law so much pain, and has changed her life so much. It used to really upset me, because I always want to find out what it is someone is dealing with so that I don't upset them without meaning to, or if there's anything I can do to help them. I just don't get it.

I think there is a massive massive huge enormous lack of knowledge about our disease, and because they don't know about it, people are inclined to be dismissive - they think that if it was really that awful, everybody would know. After all, everyone knows about cancer don't they? I suppose it's a default response - that it can't be that bad, so therefore we are over-exaggerating.... I discovered later on that my parents had told my daughter that I made too much fuss about my leg. That made me so mad, but also I was really upset and just despairing. I thought, if my own mum thinks that, what hope do I have of making anyone else understand?

You have to live with it as best you can. You can't force people to seek the information about it, all you can do is keep telling them little bits of stuff about it that they might remember. You can print off the wikipedia page on CRPS or something similar, although I found they didn't really want to be faced with that much information at once either. Sigh. The media could do so much to help us - the recent Daily Mail story really helped me, because my family noticed that, and I think it gave everything I've said some validity. Mind you, that annoyed me too!!! Lol. I thought, oh so you believe the blinkin' Daily Mail, but not me?!

I really feel for you. It is so hard. Sometimes I still get upset by it, but not as much. I think it's just another side to this that we have to get used to. I've become more laid back and patient in terms of that side of things I think - I wasted a lot of my energy in being angry or upset in the early days, and it exhausted me on top of coping with the pain.

Breathing exercises, chocolate, someone to offload to, and a good glass of red wine and a funny film are all excellent at helping me cope with the frustrations of this I heartily recommend them! I've also been seeing a counsellor occasionally, and that has been really helpful too in terms of making sense of how I feel and what I can realistically do about things like that. I spent a lot of time thinking that I ought to be able to do something about it, when really I couldn't, and trying to understand and accept other people's points of view is much healthier.

It's not really their fault. Unless you're living with something like this, you have no conception of how awful it can be. And a lot of folk assume an unknown condition must be fairly minor, they don't do it to be cruel - its just the way society functions.

Take care of yourself, have some me-time every day, and treat your body to something nice, even if it's just a hot chocolate and an episode of a favourite show. And keep positive, because that's what will get you through

Bram