A Day In My Life Photo Challenge for 30 Days Of RSD/CRPS Awareness, June 2013
Day 12 – A picture of something you love
I am my own advocate. I continue to learn about my condition(s) and keep readjusting my overall view to find the best way of working for my body long-term. But as I am part of the informal global network of patients I am in a position to do what I love most… which is sharing that self-advocacy with my fellow patients. We pool our knowledge, ask each other questions, pass on research information and helpful links online. All to help each other. That’s what I love.
Best of all is that meeting other expert patients means that we get to piece together new understandings and links that are more apparent from our broad views as patients than they can ever be from specialist doctors’ views of their specialist area only. CRPS is a multiple disciplinary disease, it covers the ANS, CNS, auto-immune system and neurological changes. So it’s not surprising that many other conditions overlap with, or form part of, CRPS, for example: Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, Multiple Sclerosis, Dysautonomia, Hypermobility Syndrome, Ehlers-Danlos Sydrome, and many more. There are plenty of patients with these individual conditions, but many CRPSers have multiple conditions as part of their overall CRPS. The more I read about each of these overlap conditions and relate it to what I’ve found in the research about CRPS, the more concepts and understandings keep falling into place, or trying to (the complexity of this disease is a challenge!). I’m not medically trained, but it is phenomenal how much you can learn when you have to, and to be the best self-advocate I can be this is what I’ve had to do. If I can share what I find with others, and share what others have found and subsequently shared with me, and what specialists have found and made available through their research papers…. well, between all of us we have the best chance of pinning down key ideas, discovering links, piecing together new concepts which can then be scientifically tested.
The only drawback, of course, is that I have CRPS!
Which means that I’m very limited in what I can do each day and for how long at a time, both physically and mentally. So progress and learning is naturally in fits and starts. But slow progress is better than none, and between us all we’ve made lots of progress, xx