Living within my flames

We have been told that I am being rushed through The Nuffield waiting list as my condition is that serious, normal waiting time for appointments is 5 months that would take us to October (it’s May and we are being seen in two weeks!!! EEEK!!!)

I am having weekly hydrotherapy appointments which seem to be helping but they pull on my hand in the water and try to stretch my legs no matter how much I scream they do it anyway, why can’t people believe me when I say it hurts to be touched so please when I’m screaming shouting crying and pleaded for you to stop just STOP!!!

4th June and my first appointments have come through for The Nuffield. Now this is kind of a new pants moment number 3 but I think that might be because of the unknown. Jo the head of physio at Wexham Park is here to met us and talk to the doctors with us. My appointments for today are Dr Konrad Jacobs (shrink) Julia Smith (physio) and Dr Nick Wilkinson (pain) mummy and daddy are with me but its not stopping my backside from going 0-60. My time has come its my turn to go in :-(

Konrad is lovely he’s spent a long time with us explaining my illness and making a plan with us all to see if we can beat this. The best thing of all is he’s told me I’m not alone, you hear me, THERE ARE OTHER CHILDREN WITH MY ILLNESS I’M NOT ALONE ANYMORE!!!! Now I know I shouldn’t be happy about this as no one should have to go through this but I’m not the only one anymore. Dr Nick Wilkinson has told me to reduce my Gabapentine until I am off it all the time and to slowly reduce my amitrityline, that’s fine by me!! I hate that stuff. I am now only on 2 drugs to help me as of today I don’t want to be on all of these drugs.