Dear Dennist

I am sorry that you are having a bad time at the moment.

I didn't think that this email I shared with all of you was "little sayings". This disease is a b**** - it has destroyed my life - I have lost so much to it, my freedom, my dignity and almost everything I loved. I used to be so many things, now I am a cranky person in a wheelchair, who watches her friends do what I used to do and get so frustrated and angry.

Some of us on this board believe that life has to continue, that we have to learn to get on with this pain in order to have any form of a life. I have had 3 hours sleep in the last week and I am still fighting to keep going, to go to lectures, to complete my work on time. I am in so much pain I can't eat, I can't sleep, I can't think straight - but this disease is something I have to be WITH and accept is part of me. The only way I survive it is being like a marathon runner and just taking one moment at a time, or one step at a time.

I know I have this disease, I also know that my doctors don't think I will ever recover. However, whatever this disease does to me I am GOING to try and accept it and move on. Have you never found it takes more energy and creates more pain to fight the RSD mentally? to go "of course I can do that, I used to?" and to suffer with the "but I used to". THis is something I have really had to learn to deal with - I'm 21, have had RSD since I was 16 and am disabled to the point of needing 24 hour live in carers. It's not a cure. But it does reduce the mental suffering associated with this to a degree.

I thought you might like to know more about the lady who wrote this. Her daughter has extremely severe RSD - she is totally unable to move anything apart from her eyes. Her mother has seen her go from a happy, normal girl to one that is unable to do anything, bed bound from pain and other RSD stuff. This girl has more courage than anyone I have ever met, as have her family. They still try to act as normal, and as time has gone on they have learnt to "be" with the RSD, to accept the pain for what it is and living a moment to moment existence. By living in today and not anticipating the pain her daughter and her family have they cope with every day as it comes.

I am sorry that you don't agree with me - you have a perfect right to, but I really didn't feel that that email was cutesy, or a set of little sayings....On this board we ALL (pretty much) have severe chronic pain, or know someone that does, we ALL have some degree of disability and in the end, we have a choice - whether to live life or to just exist.

I really hope you feel better soon - and sorry if this isn't very sensical - I have had almost no sleep for ages and it is getting to me

FRxxxxxx