It’s been a rough week. I’m disappointed about not having been able to carry out the disease advocacy and awareness plans that I’d made, and am feeling as though I let folks down. That I let myself down. Yes, there were reasons for which I wasn’t able to do those things. Good reasons, even. But, like that (in)famous quote in the movie Platoon (1):
Excuses are like assholes, Taylor, everybody got one.”(2)
What was it that I didn’t do? Thanks so much for asking! I’d planned an awareness blitz, over on Instagram and Twitter, with posts to Facebook and LinkedIn as well.
Although I despise Facebook for its roles in election interference, the promotion of hate speech, its abuses of individuals’ privacy, and more, I have to admit that it is sadly still very popular.
Tuning in to the pre-holiday buzz, I’d create a series of seven poster-style images using my own photos of Christmas and winter decorations. On each of these cheery images would be juxtaposed distinctly less-cheery disease information, from medical and scientific journals.
With proper citation, of course. Like this classic line from Marinus, Moseley, Birklein et al in the Lancet Neurology:
complex regional pain syndrome (CRPS) – multiple system dysfunction, severe and often chronic pain, and disability – can be triggered by a minor injury, a fact that has fascinated scientists and perplexed clinicians for decades…”(3)
Once each social media poster was complete, I’d then scale it – or optimize it, in more technological terms – for each of these specific social media. That would allow me to post the same messaging, while meeting the specific dimension and formatting requirements for both Instagram and Twitter; square, and rectangular. Larger for LinkedIn, then poster-sized for Facebook.
Why a specific number of these messages; why seven images, and not six or eight? Another great question, on your part ‘-) For the final day of CRPS Awareness Month, today, I’d post one of these messages every two and a half hours; at 07:00, 09:30, noon, 14:30, 17:00, 19:30, and 22:00.
The concept being that, with any luck, at least a few people in each of those time slots would see and share the message. We’ll get to that in a moment, I promise!
Five of the other quotes that I’d planned to use were striking excerpts from an article published last year in the journal Molecular Pain, confirming that the newest scientific research points to CRPS being both an autoimmune and a autoinflammatory condition:
Complex regional pain syndrome (CRPS) is a highly enigmatic syndrome typically developing after injury or surgery to a limb.
Severe pain and disability are common among those with chronic forms of this condition”(4)
Both the autoimmune and the autoinflammatory components of CRPS appear to be regulated by neuropeptide-containing peripheral nerve fibers and the sympathetic nervous system…
CRPS displays a complex neuroimmunological pathogenesis”(4)
presents with a disparate array of nociceptive, vascular, and autonomic changes that exceed the expected clinical course of the inciting injury in both magnitude and duration, frequently resulting in significant functional impairment and disability.”(4)
CRPS symptoms gradually improve over the first year after injury in some patients, but persistent CRPS is a serious problem resulting in severe pain, weakness, contractures, and bone loss…
Over 80% of chronic CRPS patients are severely disabled.”(4)
The fundamental obstacle to the rational design of therapies to prevent or treat CRPS is our lack of understanding of the syndrome’s underlying mechanisms…
a growing number of enigmatic multisystem syndromes and diseases are now believed to be the result of deranged immune system function.
We hypothesize that CRPS may have a similar basis.
Furthermore, dysfunctional neuroimmune interactions are likely responsible for initiating and perpetuating CRPS.”(4)
Interspersed among these would be the first quote I mentioned, as well as an excerpt from a journal of psychiatry, addressing the fact that individuals with CRPS often have their symptoms – their selves – dismissed, disregarded, and disrespected by their doctors. I should know, because that’s what I experienced during the first three months of my disease.
I have to live with knowing that, had that one specialist physician only listened to me from the start of my symptoms, my disease might have resolved. If it had been diagnosed and treated rapidly, my CRPS might have gone away – rather than becoming the permanent burden that it has become. That’s a difficult piece of knowledge to live with, trust me.
That’s why this quote, from the Psychiatric Times, was going to be included in my awareness blitz today. Because it clearly expresses what happened to me, and what happens to so many others with this excruciatingly painful condition:
Of all the common pain syndromes, perhaps none is so misunderstood by both physicians and patients as complex regional pain syndrome (CRPS)…
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.”(5)
Why would I rely so heavily on quotes using scientific language, rather than plain-English descriptions of this rare disease? In my view, anyone living with CRPS is already an expert in their own disease experience. They don’t need me to tell them about it! The target population for my awareness activities isn’t necessarily patients, it’s the physicians and other healthcare professionals who may not yet have heard of it:
Even though some doctors are now diagnosing it sooner, many patients aren’t seen soon enough during the six month window when there is an 80-90% success rate.
Others are diagnosed and do not receive the proper treatment.
Why?
In medical school, CRPS is not taught.
By better educating the medical community on this rare disease, we hope that every newly diagnosed patient will be able to have successful treatment.”(6)
In short, the sooner CRPS is diagnosed and treated the better the patient’s outcome is likely to be. Faster treatment equates to a much lower likelihood of this disease becoming chronic, unlikely to resolve, permanent. In many cases, the disease may even resolve – go away – if it’s treated rapidly.
Imagine that; making more doctors aware of this condition could prevent other patients from following the path of my patient journey.
Knowledge of CRPS could prevent future patients from having this disease become ‘disabling’, from it forcing them – day by day, bit by bit – to step away from careers that they love, to abandon activities, hobbies, and sports about which they’re passionate, to fear even the touch of a loved one.
People with CRPS often find themselves becoming socially isolated and withdrawn because their ability to participate in social and recreational activities is affected, and it can leave them with a greatly reduced network through which they can obtain support”(7)
Although my disease awareness efforts target healthcare professionals, it is always – always! – with the goal of helping patients. Patients are at the forefront of my advocacy and outreach activities. Current patients, future patients, their caregivers and loved ones.
It is only by educating doctors, nurses, occupational and physical therapists, and others working within hospitals and healthcare that the current situation will improve:
Complex regional pain syndrome can have a negative impact on the physical, emotional, social and financial aspects of patients’ lives.
CRPS pain is often invisible and is difficult to explain to family, friends and colleagues.
In addition, patients are faced with the frustration of no longer being able to do the things they used to and can lose their sense of identity.
Furthermore, patients have reported that their health-care professionals lacked knowledge of CRPS as a condition and this is a source of considerable frustration.
A study on the carer experience of CRPS demonstrated that they were disappointed to discover that CRPS was not well known or understood by health professionals.”(7)
All of that explains why it had been so important to me to create my own CRPS information blitz for today. What would have made this campaign different is that I generally avoid cross-posting to my social media accounts; for today, though, I would have done simultaneous posting – across the board. And here, on the blog, of course!
Because my background is in clinical research ethics, and having worked within a university hospital research team, many of my contacts are healthcare professionals and researchers. I already have direct access to my target audience, and had planned to take full advantage of that – by asking them to share some of this imaging with their own networks throughout the day…
All of this would have taken place today, the final day of CRPS awareness month. The reason for which it’s now ‘too late’. Because of the mild cognitive impairment (MCI) with which I’m now living, like a parasite eating away at my thoughts (and a relatively recent new symptom of CRPS), I knew that I’d need to break this project down into small portions.
Breaking it down into an hour here and there, throughout this week, I’d scheduled time to develop the seven posters. I’d need some time to select the photos from my library, or to take some new ones. Nothing limited to only Christmas; I’d use photographs of snowmen – snowpeople – wintry landscapes, gifts wrapped in non-denominational trimmings.
The quotes had already been selected, but I’d need to format each one into a photograph and then scale each poster for five different social media. Nothing too complicated, probably a couple of hours to complete each poster; during the course of a week. Plenty of time!
The plan had been to begin on Monday afternoon, after my morning physical therapy session and then another healthcare appointment. So, you might be asking yourself, what happened? Why didn’t I follow through, carry out my plans?
These are my reasons, which feel to me more like excuses. As I said at the start of this post, I’m very disappointed – much less my usual optimistic and happy self than usual.
I began feeling under the weather on Monday afternoon; dizzy and weak. I don’t eat anything before my physical therapy sessions, in case I vomit from pain, so hadn’t eaten anything all day. Because of the MCI, I’d forgotten to eat when I got home just after noon.
I made myself a gourmet toasted sandwich; sustainably-caught wild red salmon salad, with lemon pepper and slices of leftover grilled zucchini, on my favourite multi-grain bread.
When I feel dizzy from forgetting a meal, I tend to feel better fairly quickly after I eat. On Monday, though, I felt worse. Worse, as in having to stay close to both a plastic bucket and a toilet. Along with continued dizziness and weakness.
Okay, I thought to myself, it must be a little gastrointestinal bug. There’s one going around, I’ve heard that a few people within my social circle are also feeling ill.
Because CRPS is both an autoimmune and a neuro-inflammatory disease, patients often experience full-body fatigue – similar to those with rheumatoid arthritis, for example. And that’s what happened.
By Tuesday afternoon I’d gotten over the worst of the bug, but my body was held hostage by the exhaustion that set it. This afternoon was the first time I’ve been able to even go for a walk, let alone focus enough to write anything. This post, by the way, is being written in 30-minute increments.
I’m left feeling that I let myself down, that I should somehow have been able to subdue the fatigue caused by my CRPS. But I couldn’t, I can’t. It’s a rare sensation for me, despite having lived with this bizarre medical condition for almost four years; today I feel beaten down by it.
No, I’m not depressed. Or suffering from anxiety. Please don’t read more into this. I’m simply bone-crushingly disappointed that I once again wasn’t able to do something that I’d really been looking forward to accomplishing.
That feeling is not permanent, and I’m sure I’ll be back to my happy and optimistic – usual – self soon.
But I wanted to share with you that life with CRPS isn’t all ‘happiness and light’. It can’t be; this disease is f-ing hard to live with. And it’s okay to admit that. It’s okay to take a moment, to think to yourself that it’s not fair; that it’s f’d up. Because that, my friends, is the truth.
I took this photo during my walk this afternoon, through a forest and some reclaimed farmland, and posted it on Twitter and Instagram with the following message:
Marked the end of #CRPSAwarenessMonth with a forest walk, despite cold weather not mixing so well with #CRPS
Stumbled upon a perfect metaphor for life with this #chronicpain #raredisease
A roll of barbed wire, inconspicuously waiting to spring out and tear someone to shreds”
So, in the end, I published one image of CRPS to mark the close of its awareness month. As always, thanks so much for reading. Stay warm, stay safe, and if you need support with your CRPS please reach out to me on social media.
References:
(1) Oliver Stone; Writer, Director. Platoon. Movie: MGM (Metro-Goldwyn-Mayer Studios Inc.). Release date 19 Dec 1986. USA. Online. Accessed 30 Nov 2019:
https://www.mgm.com/#/our-titles/1536/Platoon
(2) “Platoon” quotes (1986). MovieQuotes.com. Online. Accessed 30 Nov 2019:
https://www.moviequotes.com/s-movie/platoon/
(3) 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 30 Nov 2019:
https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(11)70106-5/fulltext#secd13577181e290
(4) J David Clark, Vivianne L Tawfik, Maral Tajerian, and Wade S Kingery. Autoinflammatory and autoimmune contributions to complex regional pain syndrome. Mol Pain. 2018(14):1744806918799127. doi:10.1177/1744806918799127. ePub 20 Aug 2018. Accessed 30 Nov 2019:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6125849/
(5) Steven A. King. Complex Regional Pain Syndrome. Psychiatric Times. 23(7). 01 Jun 2006. Online. Accessed 30 Nov 2019:
https://www.psychiatrictimes.com/depression/complex-regional-pain-syndrome
(6) PARC. Recognition of RSD/CRPS. Promoting Awareness of RSD and CRPS in Canada (PARC). Online. Accessed 30 Nov 2019:
https://www.rsdcanada.org/parc/english/parc/aboutus.html
(7) J Gavin, K Rodham, N Coulson et al. Meeting the support needs of patients with complex regional pain syndrome through innovative use of wiki technology: a mixed-methods study. Southampton (UK): NIHR Journals Library; 2014 Jul. (Health Services and Delivery Research, No. 2.24.) Chapter 1, Background. Online. Accessed 30 Nov 2019:
https://www.ncbi.nlm.nih.gov/books/NBK259911/