Living within my flames

14 June and I have my first hydrotherapy appointment at NOC (Nuffield, look at me knowing the short versions). It’s strange before my CRPS I hated water in my face but now I swim on the bottom of the pool. Mummy and daddy call me a mermaid and say its because in the water I am “normal” but out of the water I’m this 11yr old crippled with CRPS. The pool here is SOOOOO nice and Julia had me catching a ball and getting things off the bottom of the pool. Must admit now I’m knackered and feel like I could sleep for a week.

School have been brill, I’m on a “step back in” program where the first week I attend school for 2 hours a day then the next week it’ll be for 3 hours a day until I’m back in full time. They say it means that even on a good day I have to stick to the hours and on a bad day too I know I only have a certain amount of time to go before I get to leave.

I won’t bore you with the weeks that followed it was the same every week NOC every Tuesday and Wexham park every Thursday.

Since my life has changed I have managed to sit my SATs (with a scribe) and I’m now up to full days at school I’m even going in for the egg and spoon race for our sports day (someone has to push me but still I’m doing it).

What is normal? For me normal is now living in constant pain, shuffling around on my bum in the house and being stuck in a wheelchair and going to appointment after appointment. I have adapted my life so I can live it not just sit and watch it pass me by. I can get up and down stairs on my own and even off my bed on my own. To look at me I am normal, you can’t see my pain, you can’t see my flames but the pain is real no matter what people say and we have heard it all “IT’S ALL IN YOUR HEAD, DRAMA QUEEN, YOU’RE MAKING IT UP FOR ATTENTION”. I dream of dancing outside the fire living a pain free life and maybe one day it will happen but until that day I will continue my fight against the pain.