At the end of 2018 I was diagnosed with mild cognitive impairment (MCI), as a result of my rare disease. I’ve had Complex Regional Pain Syndrome (CRPS) since 2016; it’s considered to be both an autoimmune and a neuro-inflammatory condition.
CRPS can cause a long list of possible symptoms, and each patient with this disease will experience their own individual blend of these. Any two patients with this condition may have different sets of symptoms, at their own personal levels of intensity.
These symptoms, and their severity, can vary through time. Sometimes CRPS symptoms will fluctuate from hour to hour. In medical jargon:
Collectively, the evidence points to CRPS being a multifactorial disorder that is associated with an aberrant host response to tissue injury.
Marinus, Moseley, Birklein et al. The Lancet Neurology. 2011.
Variation in susceptibility to perturbed regulation of any of the underlying biological pathways probably accounts for the clinical heterogeneity of CRPS.”(1)
However you phrase it, this all makes CRPS very challenging to treat – and incredibly difficult to live with. One of the most telling statements that I’ve read about this condition is from research published almost ten years ago, back in 2011:
complex regional pain syndrome (CRPS) – multiple system dysfunction, severe and often chronic pain, and disability… has fascinated scientists and perplexed clinicians for decades…”(1)
Marinus, Moseley, Birklein et al. The Lancet Neurology. 2011.
One of the facets of this condition that has been most perplexing to me is how to deal with MCI. The cognitive issues – including concentration and focus – that I’ve taken to calling my ‘intermittent intelligence’. That, by the way, is my own term for it!
To prevent a long-term worsening of my symptoms, I need to keep my brain active. The paradoxical challenge is that if I try to ‘think too much’ – or do too many different things within a day or two – then my MCI quickly (temporarily so far) become more pronounced.
I’ve found a few approaches to get around this, after realizing that one of the best way to keep a brain active is to learn new things. Did you know that learning new artistic or creative skills can have a positive impact on your cognitive health? A neurology research article from 2015 said that:
The risk of MCI was reduced for participants who reported engagement in artistic, craft, and social activities in both midlife and late life”(2)
Roberts et al. Neurology. 2015.
A few months ago I set out to find some creative courses and workshops that last only an hour or two, or can be done online at your own pace. My focus was primarily on creative arts courses, but also I also found – and signed up for – an Aqua-Arthritics class.
This fitness class is for people with arthritis or other health problems, and is taught in a smaller and warmer pool than regular swimming classes. The creative brain-stimulating side to this course is that participants have to try to remember sequences of movements or steps during each 45-minute session ‘-)
The creative course with which I’ve been having the most fun so far is an online fiction-writing course. It’s set up for short bursts of activity; watch a 5-minute video, read two hundred words, write three hundred words, and so on.
It’s also new to me, formulating fictional characters and stories. Although I’ve been blogging and writing for years, I’ve always focused on non-fiction.
The entire course can be done at your own pace; some days I can’t manage to do any of the activities, while on other days I can manage an hour at a time – several times ‘-) Unfortunately I can’t predict which days will be good and which won’t so I’m still learning to be more patient with myself.
It’s the same situation here on the blog. Some days, my brain simply can’t deal with writing – can’t concentrate, focus, or hold an idea in my mind. When I am able to write, I can only manage about a half-hour at a time, then my brain needs a rest.
I’ve been sharing some of my very first attempts at fiction writing, here on the blog. It doesn’t matter to me if my story-writing assignments aren’t all that good, what I care about is keeping my brain active – and preventing my MCI from becoming worse in the years to come.
On that note, here’s my latest story. It’s a character sketch, written to match the specific set of criteria from a course assignment; number of words, focus on current life situation and how the protagonist may have arrived there (because we’ll apparently re-work this story later in the course), and other requirements. Hope you enjoy this one!
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It was late, and he’d hoped to close up the shop before six o’clock tonight. Instead, he was vacuuming the carpet so the store would be clean when the doors were unlocked tomorrow. Who knew what that bitch Devon would tell the owner, if he left even a speck of dust on the floor. He couldn’t afford to lose another job, not so soon after the others.
He’d served his time for taking a few swings at that guy after the car crash, but he still had to hold on to this ratty little job, and suck up to the ratty little woman who owned the business. Come to think of it, she had more of a ferret face – if you focused on the eyes. Anyhow, if he didn’t keep this gig then he’d be busted back to the halfway house. Even if it wasn’t his fault that his first two jobs hadn’t panned out.
The hair salon had gone belly up a few weeks after they’d hired him. Too bad, because he’d liked it there. It was nothing like his old office job, but that was okay. That part of his life was probably over, and they’d loved that he showed up for work in the suits and ties he’d worn for his pre-prison work.
He hadn’t told anyone that was because he couldn’t afford to buy new clothes. His usual stubble had been replaced with clean shaves, and the salon owner had given him a fancy haircut – for free. He looked pretty good, had gotten in shape “in the joint”. The time inside hadn’t left him twenty-six and looking like fifty.
Some of the ladies getting their hair done had recognized him from the news stories about his trial, about how unfair it was that he’d been sentenced to prison. He’d heard some of them talking, and they seemed to really understand how he’d wanted to kill the drunk bastard who’d run his car off the road two years ago. The scumbag killer who’d stolen his wife and baby girl away.
Clients would often bring him home-cooked meals and desserts, saying that they’d cooked too much. He figured they felt sorry for him, being all alone. He didn’t mind, ‘cause he’d never learned to cook. And to be honest, after two years in prison almost anything they brought in tasted great. Friggin’ recession had cost him that gig.
Then the fiasco at the garage. The guy had told him to come in at noon, and he’d even showed up early. Then the co-owner started arguing that he should have come in at seven on his first day, so they could show him around the place.
Tell me what time to be there, I’d said, and I’ll be there. But no, this creep had been all up in his face and had fired him on the spot. That shouldn’t even count as a job, but he’d told his parole officer about it so it had showed up in his file as a job he’d “lost”.
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As always, thanks so much for stopping by, and for sharing in this ‘patient journey’ with me. I‘ve had to disable blog comments due to obscene spam from overseas sources, so please feel free to reach out over on Instagram or Twitter – I love direct messaging with you ‘-) In the meantime, have a beautiful day ‘-)
References:
(1) Clinical features and pathophysiology of complex regional pain syndrome. (Review Article.) Johan Marinus, G Lorimer Moseley, Frank Birklein, Ralf Baron, Christian Maihöfner, Wade S Kingery, et al. The Lancet Neurology. 2011(10):7; 637-648. 01 July 2011. doi: 10.1016/S1474-4422(11)70106-5. Accessed 13 Jan 2020:
https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(11)70106-5/fulltext#secd13577181e290
(2) Rosebud O. Roberts et al. Risk and protective factors for cognitive impairment in persons aged 85 years and older. Neurology. ePub Apr 08 2015; Pub May 2015. Volume 84, issue 18, 1854-61. doi 10.1212/WNL.0000000000001537. Accessed 13 Feb 2020:
https://n.neurology.org/content/84/18/1854.short?sid=52634227-c665-4cc8-a005-7c9749944bf5