Living within my flames

9th May and yet again we are back at hospital. This time we are to see a Dr Philpot who is a pain doctor. Again the hurry up and wait game has begun. Our time arrives to be seen and here we go again we await the “DRAMA QUEEN” face. A very concerned Dr Philpot solidly confirms that it has spread. She pulls mummy to one side and explains that even though I am fine in my self I am also the sickest child on her ward at the same time. There is no cure for CRPS. Dr Philpot compared me to a child with leukaemia but at least there is a cure for leukaemia as such. This really really sucks :-(

Dr Philpot disappears and after a while comes back to us. At last we are being referred to The Nuffield Hospital in Oxford as an emergency.

We still had to overcome the slight problem that I can’t use my legs and I’m off to the horse show in a few days time. The hospital said that we should call the Red Cross to see if we could borrow a wheelchair from them, great idea apart from no one had one… panic stations!!! My Datgee (Welsh for grandad) came to my rescue and brought my wheelchair which arrived Saturday morning (the day of the horse show).

I don’t know if you have ever felt like you have two heads but being stuck in a wheelchair isn’t fun at all. Mummy had to come with us to the horse show as Nan wouldn’t be able to lift me on and off the toilet. At first it was ok the bumps in the ground hurt beyond anything but as the day went on I was feeling like I wanted to burst into tears. Everyone staring at me was beginning to get me down. I felt like I had two heads and six horns. Out of all the people that were staring only two people asked me what was wrong with me. They tried to be understanding about it but when you explain that you have CRPS and what it is their faces become blank and the nervous smile creeps across their face after all how can my own body be making me feel like I’m living inside a fire.