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Here's a behind-the-scenes glimpse into the reality of "Art Despite Pain". Into the time-consuming daily life of a CRPS chronic pain and rare disease patient, and volunteer in numerous pain research and healthcare projects.
One of the 'tools' that helps me manage this autoimmune and neuro-inflammatory disease - apart from art! - is to eat a mostly anti-inflammatory and plant-based diet, without additives or processed ingredients. This means preparing LOTS of vegetables for homemade meals.
With my right hand seriously affected by CRPS (Complex Regional Pain Syndrome), I'm now quite slow with all this chopping, dicing, and slicing.
Even though I get much of our fresh produce in pre-chopped formats, I still spend a significant amount of time cutting vegetables.
To carve out more time to paint, I tend to prep veggies while doing something else; multi-tasking.
Today, for example, I got up at 0530 for an in-clinic medical appointment all morning.
I barely had time to eat a delayed breakfast when I got home at noon, before starting a series of virtual meetings.
. 1215-1600 - The brilliant watercolour painting workshop via ZOOM from Brazil, with Fabio Cembranelli, in the photo below. I was watching and listening, while chopping, with a notebook at hand - and yes, I did take notes!
. 1600-1700 - A chronic pain research project meeting via MS Teams, as a Patient Partner.
= 1700-1830 - A virtual "Chronic Pain Patient Mentorship Program" (CPPMP) meeting, with the McGill University Health Centre hospital network, where I mentor other patients who live with pain.
= 1830-1930 - A live-online art lecture, with the McMichael Canadian Art Collection museum.
=1930-2030 - My sweetheart and I quickly ate my homecooked happens-to-be-vegan dinner together, when he got home from work.
= 2030-2130 - Participated in a virtual discussion, with multiple stakeholders, on the involvement of Patient Partners in medical conferences and other healthcare events. These have traditionally barred patient participation, but are starting to see the benefits of input from people with "lived experience" - particularly in the area of rare diseases.
= 2130-2200 - Took notes of my day because my CRPS-related 'mild cognitive impairment' means that I often won't remember tomorrow what I promised today that I'd do later
= 2200 - In bed and trying to sleep despite high-impact (severe) neuropathic pain that tends to worsen at night. Meanwhile, he's asleep before his head hits the pillow. If he could bottle that ability, it would be helpful to so many others!
I rely on deep-breathing exercises, visualization techniques, mindful meditation, and often use distraction as a pain management tool by imagining how I'll approach a future watercolor painting - when I actually find time to paint!
= The alarm will go off at 0530 and we'll both start the day with an indoor cycling workout, because today was our 'rest day'.
Aerobic or cardio exercise is an important facet in my pain management plan, and I'll often read art magazine or books while on the stationary bike; the 90-minute workout passes much more quickly when I'm focused on art!
Because strenuous exercise seems to temporarily improve my cognitive issues, this is the best time for me to read.
Through the past few years, I've also noticed that I tend to have better recall of articles or books that I've read while pedaling.
Which is probably why my favourite type of art practice is plein-air painting - specifically while using the back of my bicycle as an easel during rest stops on long rides.
So, are you windows when I wrote this post?
At 0200, because I'm woken by severe neuropathic pain a few times each night. It's fairly severe at the moment, so I'm walking around in the dark in my studio and typing this out onto my phone.
And planning how to finish off the paintings that are still on my easels!