Today marks 2 years of being stuck in a bed. I no longer describe myself as “bed-bound”, but physically I’m still in that realm. I am able to get up more, and I have made progress but Complex Regional Pain Syndrome still runs my life by placing major limitations on what I can do. These annual dates of things like my initial diagnosis, school drop-out, etc. get weirder and weirder every year. There is something really neat going on today that is a cause for celebration, though!
There is an international awareness event on the first Monday of November called Color The World Orange Day! Color The World Orange Day started in the United States, and has since grown to include hundreds of locations around the world including Australia, Canada, and the UK.
This evening in Calgary, the Calgary Tower and the Reconciliation Bridge will be orange! I am going to take some pictures there and hopefully I’ll spot some others in orange when I bravely venture into the cold.
Need your memory refreshed about what CRPS is? CRPS is a rare neurological condition causing intractable pain, swelling, mobility changes, trophic changes, associated depression, extreme sensitivity including allodynia, and cognitive impairment among other symptoms. There are treatments for CRPS that can lessen the severity of some symptoms, but there is no cure. The prognosis for CRPS varies greatly between patients, and there is always a possibility of relapse for patients who show improvement. CRPS has had many names since it was first called causalgia by Dr. Silas Weir Mitchell during the American Civil War (1861-1865). Reflex Sympathetic Dystrophy (RSD), Sudeck’s atrophy, neuroalgodystrophy, and shoulder-hand syndrome are just some of the various names this condition has been called. The term Complex Regional Pain Syndrome is the International Association for Pain’s standard, although CRPS is still commonly referred to as RSD.
I am a part of a local support group for people living with this condition. The Calgary CRPS Support Group offers a safe space for people living with CRPS and those around them to have open discussions. The monthly meeting also offers different educational events, such as guest speakers, and presentations on anything related to the condition.
Last year, the local news coverage of this event allowed some patients seeking support to find the group! I really hope it happens again that Color The World Orange provides awareness for CRPS, and for Calgarians to find the support group. Check out the CRPS Support Group Calgary Facebook page.
So today is a great day to wear orange, and start the conversation! Color The World Orange is using a few hashtags that will make it easier to find content on social media platforms. There are some other hashtags like #NERVEmber that will connect you to some other great organizations (like iPain, the International Pain Foundation) putting on awareness events this month.
Links for some amazing initiatives and organizations:
Thank you thank you THANK YOU for your support!
*for anyone confused at the spelling, Color The World Orange started in the USA so I generally try to keep that spelling so they can be found easily. However, my Canadian brain still puts out “colour”at times. If you are like me, and inconsistency bothers the hell out of you- I’m sorry lol. Yep, this is how my brain works.