Happy almost Halloween, everyone! I’ve been busy over the past few weeks, participating in meetings about pain research and health policy, providing a patient perspective on the development of a new pain research project, and preparing my own little awareness campaigns for some special events next week.
Next Monday, November 1, is both CRPS Orange Day and the start of Canada’s National Pain Awareness Week (NPAW). It also marks the beginning of CRPS Awareness Month. If you’re on Instagram or Twitter, keep on eye on the hashtags #CRPSorangeDay, #CRPSawarenessMonth, and #NPAW2021.
I don’t want to ruin my awareness campaign surprises, but you can see what I did last year with deliveries of bright orange “treat bags” containing CRPS information to local pharmacies. Why did I focus on raising awareness of CRPS among pharmacy-counter staff?
Because CRPS is a rare disease that can show up in a number of different ways; from skin problems to joint issues, to a range of different types of localized pain – usually starting with a person’s hand or foot. Burning pain, freezing pain, a feeling like electric shocks running down the arm or leg, an extreme skin sensitivity, and more.
Here in Canada, with our shortage of family doctors, many people will stop in to see their local pharmacist when they develop any strange new symptoms. With rapid diagnosis and treatment being key to the best outcomes for CRPS patients, I’ve always focused my awareness-raising activities on healthcare professionals and students who might someday be in a position to recognize this nasty disease.
If CRPS isn’t diagnosed within about three months, it’s much more likely to progress to a debilitating and chronic condition; this is often preventable with early treatment… which, of course, requires a diagnosis:
The prognosis of CRPS is quite good if treatment is started early… without adequate therapy, CRPS can spread to other limbs and worsen in terms of symptoms and chance of recovery.” (1)
CRPS, by the way, is Complex Regional Pain Syndrome. It’s a rare autoimmune and neuro-inflammatory disease, formerly known as Reflex Sympathetic Dystrophy or RSD. I often mention its old name, because many organizations and even physicians still use it. I’ve had CRPS since mid-2016, and by the end of 2018 its neuro-inflammatory side had kicked in causing a mild cognitive impairment.
Which brings me to the other activity that’s been keeping me busy, on weekends and in my free time; learning to paint. Although I had a lifelong dream of learning to paint, with watercolours, I’d thought that my cognitive impairment meant I wouldn’t be able to learn any challenging new skills. It is very difficult at times, for example when I forget simple grade school art rules like which colours to mix to get a green (blue and yellow), but it’s also been a lot of fun.
After picking up a paint brush for the first time at the end of January, I realized that I’d also need to learn draw if I wanted to be able to paint realistic landscapes and nature scenes. Some days my brain simply can’t cope with trying anything new, with learning anything, and I’ve (slowly!) come to accept that I can’t push it.
If I try to force my brain to “work” past the point at which my cognitive issues have really kicked in, then my brain will take much longer to recover; days instead of hours. And that really is difficult to deal with. Not only for me, but also for my husband.
So this week I was quite happy to be able to complete a couple of art challenges. Today I finished the “Paint a Pumpkin in Plein Air” (paint outside) challenge, which is why there’s a photo of me doing a watercolour sketch of the pumpkins on my front steps… You had to post a photo of your painting align with the pumpkins being painted! I did that one on my lunch breaks; the drawing yesterday, then the watercolour sketch today.
Earlier this week I completed a local university challenge to draw or paint my own interpretation of an acrylic painting by a Canadian artist. And I had some paintings to do as part of my “homework” for a weekly watercolour painting class as well. Not challenges exactly, but still challenging!
Writing about pumpkins has just reminded me that I still have some Halloween decorations to set up, so I should go do that – before I forget again. My front yard has already a bit of a monster graveyard for a few weeks, but I always save some decorations until just a day or two before the big day… A life-size creepy clown that sits on our front steps, some larger tombstones in the yard, and some plug-in or battery-operated moving creepy-crawlies.
Then there’s the 6-foot wide furry spider, that I perch on top of the car in the driveway. It’s very light, so tends to move in the slightest breeze – that one always scares at least a couple of kids ‘-) Halloween is a big deal at our place, as you can see. My husband and I even put on costumes to hand out treats, and love it when kids are so scared that their parents have to come to the door with them!
Last year because of COVID, we didn’t want kids coming to our door, so we put the creepy clown in a large lawn chair and used it to block the steps to our door. We stayed outside, behind the clown, and used a large garden rake to hand little candy bars to kids – right over the clown’s shoulders. We may do the same again this year, because so many of the kids got a kick out of having to get up close to the clown to get their candies.
Whether or not you celebrate Halloween, I wish you a good end to this month – and a good start to the next one. As always, thanks so much for stopping by. Feel free to reach out over on Instagram or Twitter, as I’ve had to disable comments here on the blog. It just got to be too much for me to manage, with my cognitive issues. I do love to hear from you, though! Keep safe, be well, and look after yourself. All the best!
Reference
(1) Kabani R, Brassard A. Dermatological Findings in Early Detection of Complex Regional Pain Syndrome. JAMA Dermatol. 2014;150(6):640–642. doi:10.1001/jamadermatol.2013.7459. Online. Accessed 28 Oct 2021. Web:
https://jamanetwork.com/journals/jamadermatology/fullarticle/1861486