I thought this would be a good time, as the first month of the year draws to a close, to write about some of the positive aspects of my patient journey. This isn’t to downplay any of the negative ‘stops’ on my rare disease ‘train’, from when my first symptoms appeared in early 2016. I simply don’t want to focus on any negativity today!
So what would I like to tell you about? Great question! After almost four years of living with CRPS, I can look back now at how my patient journey has changed me; in many ways for the better. To be clear; I detest having to adapt to my still-new mild cognitive impairment (MCI), and to living with constant and often excruciating pain and countless other symptoms, to not being as independent as I’d always been…
Let’s look past all of that for now, okay? Are you with me? Good! We’re going take my patient journey ‘train’ metaphor a bit further in this post, so I hope you’ll enjoy the ride ‘-) Before this train even leaves the station, I’d like you to first imagine several railcars strung between its engine and its little red caboose.
Family and friends
Try to picture this long train in your imagination. Its engine and caboose are red, the colour of the international first aid symbol, and representative of me and my red hair ‘-) The other rail cars are bright orange, the colour of flames and of CRPS. The first two carriages, following the engine, are enormous; at least triple the length of a standard carriage.
It’s an imaginary train, so let’s not get carried away with all of the reasons for which longer cars aren’t theoretically plausible… just go with the image, okay?
The engine represents me; because without a patient, this patient journey wouldn’t exist. I’m up front, leading the way, in several ways. I decide which approaches I take to CRPS; which suggested medical treatments I agree to try, which recommendations – from my physicians and other therapists – that I follow, what my mindset will be for any specific challenge or setback along the way, when I need to stop or re-evaluate an approach, and …
But there’s no way a person can take this journey alone! That’s why the next two railcars are huge. The first is, along with all the others, bright CRPS orange; imagine the colour of road construction pylons. If you live in the Montreal area, these will sadly be very familiar to you! By the way, neither the engine nor the caboose are numbered – only the remaining railcars.
This carriage is decorated with heart symbols, painted in vibrant colours – in varying shades, shapes, and sizes – across its panels and roof. It contains the good wishes and support of my family and close friends. They’ve been with me through every twist and turn – each bump, derailment, detour and unplanned stop – of this train ride. They’ve accompanied me to the beautiful or happy stops as well, like scenic viewpoints along the route.
Even without understanding this rare condition, they’ve been there for me; offering to help, meeting for last-minute coffee or lunch on weekdays – the moments when I miss my workplace more than ever or feel suddenly alone and isolated. I couldn’t have made it this far without you, each one of you. Thank you so much!
And they’re all still there, still offering their unwavering support. This winter, four years after becoming ill, barely a week goes by in which I don’t have at least one or two coffee or lunch dates. Not a day goes by without a call, email, or text from a family member or friend. Some days, early on in this train ride, those messages were what kept me going.
That, and of course the daily – often minute-by-minute – support of my husband. He has always, always, always let me believe that things would be okay. Even when he had doubts himself, or had fears about our future, he never let them show at moments when I most needed his support. There aren’t enough words, my love…
Healthcare
The second carriage, just as long as the first, is for all of my current and past physicians (except one!) and healthcare professionals. I’ve already written many – many! – posts describing the excellent care that I receive; through my exceedingly kind family physician, the entire empathetic patient-centred team at a university-hospital’s multidisciplinary pain management unit, and a number of other caring clinicians throughout this journey.
This carriage is decorated with paintings of zebras, their black and white stripes distinct against the bright orange background. Why zebras? Because they’re the symbol of rare diseases, and CRPS is considered to be a rare disease. And similarly to other rare conditions,
“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”(1)
Marinus, Moseley, Birklein, et al, The Lancet Neurology, 2011
This second car holds the care and support provided by the individual members of my healthcare teams; past, present, and future. It’s an imaginary train, remember? That means it can contain future care! If you haven’t already guessed, I’d like to make it clear that I wouldn’t have made it this far in my patient journey without them. Sincere thanks to each of you.
Those two carriages are constant companions, integral parts of my patient journey train; the first carrying the support of my family and friends, the second that of my healthcare professionals. Imagine these two carriages as containing extra fuel, or energy, to help power this train through the challenges along the route. Without them, this train might have derailed somewhere along the way.
Other sources of support
The remaining carriages, also bright orange, are the standard size for railcars. The next one represents the daily online support of folks like me. Other patients – who live with chronic pain, CRPS, or other rare conditions – along with everyone who reads this blog (thank you!), the members of my weekly Twitter chats, and strangers. Oh, and I can’t forget patient organizations such as the UK registered charity Burning Nights CRPS!(2)
Then comes one for the online presence of clinicians and researchers who dedicate their time – often their careers! – to chronic pain. And a number of physicians from other specializations who comment or respond to my posts about CRPS or chronic pain in general. It never ceases to amaze me that these individuals would take the time to reach out to me, to interact with a stranger. So this carriage isn’t simply for their general online presence, it’s for their personal interactions with me.
Next is the railcar representing the professional associations, societies, and other organizations with whom I interact; dedicated to chronic pain, CRPS, or rare conditions. Most important among these is the Canadian Pain Society, for providing my first opportunity to be an official Patient Partner – back in May 2018. That was a turning point in my own patient journey, the point at which I realized that I could be doing more to help other patients.
Today I’m involved as a Patient Partner in two very different projects, one for knowledge translation with the Pain Science Division of the Canadian Physiotherapy Association and the other for the government-funded Play the Pain research project to develop an app for people living with persistent pain.
There’s another railcar for the activities, classes, courses, events, and workshops available to me. Some excellent examples of this are the Aqua-Arthritics class that I’m currently taking at a local aquatic centre, the almost art therapy clay-flower workshop that I took last year at a municipal library, and the free monthly art lectures offered at a community centre art gallery. There’s also the short-burst online course I’m taking in creative writing… hence the idea for the image of a patient journey train ‘-)
By this time, I’m certain you will have gotten the idea of my patient journey train! Each railcar represents a group of people, activities, or things that has had a positive impact on me since I became a CRPS patient almost four years ago. There are other cars that I haven’t named – exercise, nature, outdoor sports, and more – but I’ll stop here.
What I wanted to convey in this post is that my patient journey, although mine to take, has been supported along the way by so very many others. This entire post has been an extended thank you note – to each of you! Thanks so much ‘-)
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 29 Jan 2020:
https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(11)70106-5/fulltext#secd13577181e290
(2) Burning Nights CRPS. Website. Accessed 31 Jan 2020:
https://www.burningnightscrps.org