I think of mine as 3 year old monster child who is totally out of control. If I give in to every demand then I only have to put up with the "normal" terror - but if I DARE to do ANYTHING AT ALL then I will suffer endlessy for it. It allows me to have an "ok" presentation to the outside world, as long as I "explain what is going to happen" before I go out (2 hours + in bed), go out for less than 3 hours (unless it has a tantrum) and am willing to spend a certain amount of time in bed (giving in afterwards and rewarding it).

It is an absoloute monster and I have found that whilst it no longer controls me, I MUST change my life to try and life in harmony with it. Whilst it doesn't stop me doing things - I must be willing to accept the repercussions for doing things.

However, the biggest "monster" I had to fight in order to learn to live (with some quality of life) was FEAR! fear of pain, of disability, of being different, of the unknown, of depression (or leaving it). In fact, FEAR of (at the time) being a 16/ 17/ 18/ 19/ 20/ 21 year old girl who is suddenly very disabled and in agony and yet who is expected to be normal, not show pain on the "outside" and deal with being different...

but, I did it, and now, (some of the time) I live in harmony with the monster, and some days she punishes me, but, I do have some quality of life! even if it is with a monster, a wheelchair, a carer and a sick bucket! ! ! !

Love

Froggsy xxxxxxxxxxx