This post was originally published on Rebecca’s Blog and is reprinted with permission.
Today is Colour the World Orange day, the international awareness day for CRPS (Complex Regional Pain Syndrome), I’ve dressed head to toe in orange for the occasion. To try and increase understanding of CRPS I’m stealing a format (and many of the questions) from the invisible illness week “30 Things” meme.
CRPS is a chronic pain condition, there’s no fully understood mechanism for it yet but it is usually triggered by an injury. CRPS likely has a number of causes which almost certainly include neurological and autonomic elements. CRPS is characterised by severe pain, swelling, temperature changes, discolouration and motor dysfunction. for more information click here.
1. My CRPS affects: my whole body – it started in my right arm but then spread.
2. I was diagnosed with it in: late April 2007 after an accident at school
3. But I had symptoms since: I had some symptoms start which could have been CRPS in October 2006 – Officially though my CRPS started early April 2007. I only had a 2 – 3 week wait for diagnosis, I know others who had to wait years.
4. The biggest adjustment I’ve had to make is: not doing everything! Pacing and prioritising is hard but if I don’t then I end up being able to do very little at all.
5. Most people assume: That my pain is not that high because I’m not visibly distressed by it. My normal daily pain level usually hovers between a 7/10 and an 8/10.
6. The hardest part about mornings are: The moment after I wake up and the pain hits me life a truck. I never get used to that.
7. My favorite medical TV show is: Casualty
8. A gadget I couldn’t live without is: My electric wheelchair – no contest. Closely followed by my inflatable bath lift.
9. The hardest part about nights are: not being able to sleep.
10. Each day I take 30 pills & vitamins plus other medications in liquid form. (No comments, please).
11. Regarding alternative treatments I: am willing to try most things. I have regular acupuncture, the scientific explanation says it works the same way as a TENs machine. Even if it’s a placebo I don’t care so long as it works.
12. If I had to choose between an invisible illness or visible I would choose:
13. Regarding working and career: I can’t work or study at the moment. Hopefully I’ll be well enough to go back to uni soon.
14. People would be surprised to know: the slightest touch to my body hurts, clothing hurts, hugs hurt, the wind on my skin hurts. You probably don’t know because a) I’m not a big fan of going round naked and b) I like hugs.
15. The hardest thing to accept about my new reality has been: that I can’t just power through.
16. Something I never thought I could do with my illness that I did was: so many things. Right after diagnosis I would have said writing. Now I say go to uni,
17. The commercials about my illness: don’t exist.
18. Something I really miss doing since I was diagnosed is: swimming. It takes too much energy.
19. A surprising way CRPS effects me is: the amount of fatigue I have, it’s not one of the headline symptoms in most people CRPS but for me it is as disruptive as the pain.
20. A new hobby I have taken up since my diagnosis is: paper crafts.
21. If I could have one day of feeling normal again I would: climb a mountain. Or dig the garden. Something physical anyway.
22. My illness has taught me: a lot about myself. I would never have known how resilient I am without it.
23. Want to know a secret? One thing people say that gets under my skin is: “it can’t be that bad”. If I’m telling you it’s bad it’s probably worse than you can imagine. I don’t really talk about my normal level of bad.
24. But I love it when people: do little things to cheer me up. Send me a text or come over for tea/coffee.
25. My favorite motto, scripture, quote that gets me through tough times is:
26. When someone is diagnosed I’d like to tell them:
27. Something that has surprised me about living with an illness is:
28. The nicest thing someone did for me when I wasn’t feeling well was:
29. I’m involved with Colour The World Orange because: I’m part of an organisation called CRPS UK where we work to help to improve the lives of people with CRPS. Awareness and education is a big part of that.
30. The fact that you read this list makes me feel: happy that you’ve taken the time to learn.