To make sure that I get out of the house more often this winter, to avoid the bad situation in which I found myself at this time last year, I’ve just signed up for a number of activities. I live in an area of several smallish cities and towns, all within a short drive and all considered to be part of the general Montreal area. Each town runs its own library and community centre, while some also have cultural centres and even public art galleries.
Many of these local municipal libraries and community centres offer courses and workshops, often at very reasonable prices. Sometimes even for free ‘-) These tend to run an hour per session, once a week, which is about the limit of my attention span ever since I was diagnosed with mild cognitive impairment (MCI) just before the 2018-2019 winter holidays. Because of the MCI, I had to very suddenly go on medical leave and step away from my career and a job I loved.
The MCI was a new symptom of a rare disease that I’ve had since 2016; it’s called Complex Regional Pain Syndrome (CRPS), although some physicians still use the older term Reflex Sympathetic Dystrophy (RSD). Experiencing these new cognitive issues, along with the intense neuropathic chronic pain and other symptoms of CRPS – while being ripped away from my work and colleagues – was rough on me.
For the first little while I thought I’d be able to go back to work, perhaps after my brain had ‘a bit of a rest’ from my long hours at work and the intensity of my career. My doctors soon realized that the MCI wasn’t improving with ‘rest’, and began discussing the possibility of the MCI being a permanent condition.
I’d never imagined that this disease could rob me of my career, of my dream job in bioethics; managing a major healthcare philanthropy program. As you can imagine, I was in a bad state of mind at the start of last winter because of all of this. Just when I most needed emotional support, I made a very bad choice for myself.
What was that bad decision? Glad you asked ‘-) That choice was to more or less retreat from the world. Why did I do that? I suppose it was partially because I didn’t know what to say about my situation, when I ran into my colleagues or other people I knew. As with so many other chronic pain patients, I don’t usually look ‘sick’:
Unfortunately, because many patients with CRPS appear “normal” and because pain such as allodynia seems so bizarre and so foreign to most laypeople and even some health care professionals, patients may be mistakenly thought to be either exaggerating their pain for secondary gain or even malingering.
One of the saddest things is that these patients may find their pain discounted by so many others and may be stigmatized as falsifying their discomfort.”(1)
This made it very difficult to explain why I was suddenly unable to work, whenever I’d see one of my co-workers at the grocery store, the pharmacy, the bank. How could I explain that my physicians had put me on medical leave because of mild cognitive impairment, related to my rare disease, when I’d never had those symptoms before? After all:
complex regional pain syndrome (CRPS) – multiple system dysfunction, severe and often chronic pain, and disability – … has fascinated scientists and perplexed clinicians for decades…”(2)
Think about that for a moment. If CRPS has perplexed physicians for years, how would I even begin to explain it to folks who aren’t doctors?! One of the reasons for which I began raising awareness of CRPS was to educate medical and other healthcare professionals about it.
But the ways I do that aren’t helpful when I run into a colleague at the grocery store! For example, handing out copies of medical journal articles about CRPS isn’t practical in everyday life ‘-) Nor is it environmentally friendly, right?
At this time last winter, I was dealing with new cognitive symptoms as well as the anguish of having had to step away from my dream job and from my colleagues and work-friends. Added to that, I was still in constant CRPS pain.
And the weather was far too cold for my temperature-sensitive disease; I usually dispel negative feelings through outdoor sports – even walking in the forest near my home – but that wasn’t possible at the time. At that point, I made the bad decision to retreat from the world.
I more or less isolated myself from my family and friends. I tried not to show my husband, who has always been my little island of peace in stormy seas, how bad I was feeling. Many mornings, he’d go off to work and I’d start to cry. I felt so guilty! That he was going to work and I wasn’t. That I was letting my team down, that I wasn’t delivering on projects that I’d promised to complete. That I wasn’t ‘pulling my weight’ in our marriage.
At the time in my life when I would most have needed the emotional support of my loved ones – and even of acquaintances and strangers! – I walled myself off from it. I avoided going out, leaving my home, because I didn’t want to run into anyone I knew… I didn’t want to have to try to explain what was going on in my life at that point. I’d have started to cry; but maybe that’s what I really needed to do.
Are you expecting to read that I ended up suffering from depression? That tends to be one of the first questions that people ask me now, when I talk about that ‘dark winter’ period. I’m very happy to say that I wasn’t plagued by depression, probably in large part because of the hospital pain management unit (PMU) at which I’m treated for CRPS. Why?
The PMU’s multi-disciplinary team includes physicians from several specialties, along with family doctors, nurses, occupational and physical therapists, psychologists, psychiatrists, and other health professionals. One of the first assessments that new patients undergo at the PMU is with one of their psychologists.
They made it clear that consultations are available for patients who’re having emotional or mental health difficulties, because of their chronic pain condition.
I’d started meeting with a psychologist there, someone who specializes in treating patients with chronic pain, when I first began noticing signs of what turned out to be a mild cognitive impairment. For example saying or writing the wrong word, when I was certain that I’d used the correct one. After I was placed on medical leave, she was the one person with whom I felt I could be brutally honest about my feelings – despite my self-imposed isolation. Each time, I’d end up in tears.
She helped me to see that my feelings of guilt weren’t helpful, and then got me into an eight-week group psychology course – for chronic pain patients – offered by the PMU; from mid-March to early May last year.
By the time that course began, I’d already begun to feel better – the winter weather was drawing to a close so I was able to regularly get outside again; taking walks in the forest, and even riding my bike when the temperature rose above the freezing point.
That spring, I vowed not to let myself go through another ‘dark winter’ like last year’s. That’s why I just registered for a variety of different activities this winter; to get myself out of the house at least a few times a week… until spring arrives and I can get back outside again 😉
Although a town’s own residents are given the first opportunities to sign up for municipal courses or workshops, any extra spaces – after the initial registration period – are offered to residents of nearby towns. I took advantage of this to register for activities in different towns. I know that once I’ve signed up for something then I’ll usually go, even if the weather’s bad.
What types of activities did I register for? Stay tuned! I’ll be posting details in a day or two, once I’ve received confirmation of my registrations… One of the workshops was almost full, so I’ve been put on the waiting list; the organizer told me that my name’s the first one on that list, and that she expects a cancellation from someone who wasn’t sure about it…
Thanks so much for stopping by, and please feel free to reach out or comment over on Instagram or Twitter; no comments are being allowed on this blog to avoid obscene spam from overseas. I loved reading your comments, but not enough to open myself up that those types of messages!
References:
(1) Complex Regional Pain Syndrome. Steven A. King. Psychiatric Times. 23(7). 01 Jun 2006. Online. Accessed 14 Jan 2020:
https://www.psychiatrictimes.com/depression/complex-regional-pain-syndrome
(2) 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 14 Jan 2020:
https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(11)70106-5/fulltext#secd13577181e290
(3) Definition of malinger. Merriam-Webster, Incorporated. Online dictionary. Accessed 14 Jan 2020:
https://www.merriam-webster.com/dictionary/malinger