Hi I’m Katie, an 18 year old from New Zealand and this is my CRPS story/ journey.
February 12th 2018 – it was the day that was to change my life. A routine correction surgery on my ankle led to me getting Complex Regional Pain Syndrome after they suspect damaging a nerve.
I began my fight immediately after surgery, from wheelchair to walker. This fight took MONTHS but eventually I took my first steps unaided, this was after many Emergency Department visits simply for pain , especially when I had to wear a cast for my ankle. At this point I was misdiagnosed, they thought I had developed an infection, which became obvious later on that I hadn’t.
Then I started a normal life again in late August/early September despite the constant pain and feeling like I was on fire. I started walking unaided, this was honestly one of the greatest feelings that no words are able to describe.
At the beginning of October I was given the once in a lifetime chance to go on a plane for the first time, arriving at the destination with my youth group. I completed many things, one of which being an entire bush walk despite the pain. This for me was a major accomplishment that I will never forget.
2 weeks later, while with the same group, I accomplished so many things I thought was impossible just weeks before. My life was about to change and this time it was no miracle, rather it was more like a nightmare. Playing spotlight I fell, straining a tendon in my knee. To most people this would be fine, but not only did my CRPS spread to my knee, it also worsened in my ankle.
For a moment I thought my life had stopped. Tears flowed from my eyes as I transferred back into the wheelchair. Being 17 at the time all I could think of is the beach trips, the swimming, the walking I would no longer be able to do, practically the whole normal teen life .
That was 5 months ago, since then I have faced many obstacles. Some of which include 15 iv needles in 5 days, ketamine infusions, alendronate infusions, iv fluids due to my blood pressure no longer being stable and 27 tablets a day.
However the BIGGEST obstacle is people not believing I’m ill because CRPS is an invisible illness together with the mocking I get being the only person in school confined to a wheelchair .
But despite the negatives it’s given me so much opportunity I would have never had otherwise. Educating people who had no clue CRPS existed, my new found ability to appreciate the smallest things in life, and above all the ability to recognise how much fight my body has. It has given me the opportunity to work on my digital art business as I have more time no longer being able to walk alongside many other opportunities I shall not take for granted
I plan to walk again one day, but as it stands this is my CRPS story it’s a continuum that doesn’t have a defined end. But if you can take one thing from this, I would say you are stronger than you believe, and you can overcome many challenges.