A Little History For You

I figured now would be a good time to take a few moments to describe how this part of my life began.


I had finished my first term at high school and was looking forward to enjoying my 2 week break (although  I did have a huge pile of homework to complete for English & French!). However, my holiday began very differently to how I'd imagined it when I had what was later named as a seizure, at the school bus stop. Really smooth, I know. For the next term I was known around school as "that girl who fainted in front of everyone". 


I fell on my ankle and when I came to, I was unable to move my leg so was taken to the hospital to be checked out. X-rays showed that there was nothing broken, but the doctor suggested I use crutches over the weekend to give my ankle a rest. Flash forward to 4 months later, and I was still alternating between crutches and a wheelchair, unable to weight bear, and couldn't even cope with someone touching my foot or calf. Physios were baffled, I was shipped from doctor to doctor and wasn't being given anything to help the agonizing pain I felt every day. I should point out that this isn't an unusual scenario for people who develop CRPS. It still remains a condition that many doctors don't know enough about to diagnose easily. Being only 13 at the time, other doctors didn't think I could have developed CRPS as it usually affects people between the ages of 30-50.


One of the most frustrating parts of finally being diagnosed was that having a name for what was wrong with me didn't offer any solutions, short or long term. I did get put on some pain medications which meant I was able to go back to school part time, though that wasn't without its own difficulties. One of the most memorable instances was when I was first put on Tramadol and without fail 45 minutes after I'd taken it I would fall asleep. It completely freaked out one of my teachers when I fell asleep in Social Studies and wouldn't wake until the bell rang an hour later!


I speak about experiences like that humorously now, but at the time I was humiliated. That combined with the bullying I received for being "different" and "uncool" because of my wheelchair made my first year at high school a much more challenging experience that I'd imagined it would be. Looking back on it now, I'm glad I stuck it out because throughout all of my health problems (and the 4 month spell I spent in hospital when I fell into a coma), I still managed to do well academically and showed people that being physically disabled was very different to being intellectually challenged.


Anyway, 6 years down the track, I'm still struggling with my diagnosis. There are days when I feel in control of my health, and there are days when I wish I had been diagnosed with some well known condition that has a proven treatment plan and cure. But, those weren't the cards I was dealt, so instead I have to work with what I've got. I've moved from doctor to doctor, physio to occupational therapist, psychologist to psychiatrist. The diagnosis hasn't changed, except for the collection of specialists I've met with who don't believe CRPS exists. But I have grown as a person, and have met some amazing people through the CRPS online community.


Something I've always believed, and still do, is that knowledge is power. The more I learn about CRPS, the more I can share with my family, friends & doctors, and the more I can learn from other patients. We pass our knowledge and experiences onto other people and in turn they can share what they know, all in our efforts to raise CRPS awareness internationally, and help put our the fire that is CRPS/RSD.