Living within my flames

3rd May came around too soon again, I found myself and mummy sitting in a tiny room talking about my pain yet again. This time we didn’t have to feel like part of the furniture at Wexham Park as we were just around the corner at the local hospital King Edwards. We all agreed that the block hadn’t worked and maybe we should give it another go but this time I was put on Gabapentine which is a nerve drug, yeah space mountain here I come. So yet another operation was planned for the 7th May, 10 days before my birthday but only 4 days before the Horse show!!!

This operation was the one that changed my life all together. MAJOR MAJOR COCK UP TO BEAT ALL THAT CAME BEFORE.

May 7th arrived and the same routine as before time to play the hurry up and wait game in gown to big and ward too noisy. My time finally arrived and I was put on the trolley of doom. Everything went well and I woke up starving!! Again it didn’t feel like it had worked but only time would tell right?

Back up on the ward I felt like my legs were really heavy and I wobbled when I walked, we were told it could be a side effect from the sleepy drugs. We were allowed home and that is when my world fell apart.

Back at home I still didn’t feel right in the leg department but hey it’s just a side effect. How wrong was I?!?!?!?

5 hours after being at home I went to stand up and my legs gave out from under me luckily mummy was there to catch me as I fell. It was almost like they had burst into flames just like my hand and arm fear and dread ran through my body like a thousand galloping horses. Mummy called the ward and they said to keep an eye on me and if things don’t improve to get me to the GP in the morning but if she was really worried to take me straight back in to Wexham. I didn’t want to go back there that night so we thought we’d see how I was in the morning.

8th May well I guess that is that, my legs don’t work!! Mummy has called the GP and we are on our way there soon. I have a sinking feeling my CRPS has spread to both of my legs :-(

Mummy had to carry me into the surgery as there is nothing in my legs apart from pain and invisible flames. Dr Shin is really sweet he was shocked that a 10 year old active little girl is now crippled with CRPS. As we sat there he called the ward and asked for them to see us straight away. He asked if we needed an ambulance to get us there quickly but there is no point really as mummy can drive. Scooping me up in her arms mummy and I left the doctors and headed straight to Ethan’s school to pick him up then off to pick up Haiden from our school. Lucky for us Datgee was staying with us at our house while he recovered from being ill himself so the boys didn’t have to get bored sitting waiting in the hospital.

Mummy carried me all the way from the car to the ward, a long way when your carrying a weight as me and are scared out of your mind. A nurse got us a wheelchair and mummy could finally rest her arms. We waited a while until it was our turn to be seen. After some more prodding and poking touching and screaming we were told that they think the CRPS might of spread to my legs. Bingo worse fears confirmed. We were asked to come back the following day when we would be able to see someone who specialises in pain. So that is what we did.

I need to point out that since January Mummy and Daddy have fought and battled for me to be seen at either the John Radcliffe Hospital in Oxford or Great Ormound Street in London as they are the two best hospitals for dealing with this pain.