Hey all.. I can't believe another year has gone by.. another anniversery...
I can't believe that I've now had this dreadful thing for 7 years.. it's so scary that time has gone this fast and that this time 7 years ago I was walking, using my arms normally with just the odd bit of joint pain and back/neck pain if I did too much (as in running a couple of miles after a full day of school).
I still can't believe what this has done to my life. I've been stuck in a wheelchair for 6 years, I haven't been able to feed myself in 3 years, I have struggled to eat and had times when eating is totally impossible for the last 3 years. My pain is not under control despite copious amounts of morphine and ketamine, dihydrocodeine, paracetemol, ibuprofen, tramadol, baclofen and diazipam nor are my spasms. I have frequent dystonic storms and have had several attacks of status dystonicus. As I sit hear with my microphone dictating this it makes me so sad thinking what that one fall has done to me. The RSD and dystonia even affect my face and mouth now, they blink all the time, make me look like I have a tic in my cheek, twist my tongue backwards.. I now have chest spasms, torso spasms and just PAIN.
I'm feeling really down because i can't believe it's been 7 years... at least 2 of those wasted having to lie flat in bed in a dark room.. I can't believe I'm 23 with the body of a 80 year old. I'm reliant for everything from eating to dressing to using my wheelchair to well....
But I've managed to go to uni and am doing well, I have the most amazing friends who are there for me 100% and a great boyfriend..
just sometimes you wonder
- what it would be like not to be in pain
- what it would be like to stand up tall and walk (I've grown 7 inches since going into a wheelchair! I'm now 6"1)
- what would have happened if I hadn't have got sick? would I be a qualified dr now?
would I have the same personality? I mean, would I be "me"?
probaly not.
Right, it's 4am and the extra morphine and ketamine mum gave me has just started to help so I'm going to try and get some sleep whilst I have a chance...
Add more later
all my love and pain free hugs
Rosie xxxxxxxxxxxxxx