A few weeks ago, I went for a 30-minute walk. It was something I considered a long walk at the time. For the first 15-minutes I felt fine; good, even. Then, somewhere in my body a fuse blew, taking my energy with it. My legs leadened, becoming strange appendages over which I had no control. My vision glazed, my heart rate spiked, and for the last 15 minutes I dragged myself home, staggering like I was at the tail end of a quarter bottle of gin, the whole time wondering whether I would make it or whether it would be safer to just lie down and hope someone would call for help. When I finally got home, my muscles pinged and spasmed in complaint. I put on a meditation app and tried to breathe while the pulses passed. I’ve done walks like this before. Many times. They don’t get less scary. And I still never know at the beginning which way it’s going to go. All I can do is cross my heart and hope for the best.
Still, I remain motivated.
It took 6 years to finally get a referral to a rheumatologist. From there, it was plain sailing, from assessment and tests to diagnosis all in a few weeks. Plain sailing provided you’re prepared to overlook the 6 years of failed diagnoses in between.
If something flares up, it can also flare down. I also believe it can fuck-off entirely if only I can crack the code of what makes me well versus ill. My body has proven this to me over and over again. And my nan’s voice always sounds in my ear: listen to your body, it knows how to heal itself.
However, getting a diagnosis earlier this year has made all the difference for me. After years of blind research, of trial and error, of thousands of pounds and thousands of hours spent on treatments that didn’t work, I’ve been able to attach some focus to my efforts. Then, finally, very recently, I’ve stumbled upon a treatment that seems to actually work, something that might be the key that unlocks this terrible illness; at least for me. (See Resources note below for details).
Getting diagnosed with fibromyalgia
Which of these life events cause it? I suspect it was probably all of them, all piled on top of some ‘Adverse Childhood Experiences’ (to use pyschobabble because the real story is a little too personal to share). In all likelihood, the gun was loaded in my early years, recent events simply pulled the trigger. Yet, in truth, it’s impossible to say and I’ll never know for sure. That’s sadly the reality of many chronic illnesses.
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Six years might sound like a long time to exist with pain and no diagnosis. However, like most chronic illness, it’s not like I woke up one morning and there it was, this pain and these symptoms in their entirety. It started with arm pain. Six months later the pain had spread to my back, then my neck. When my mum got sick, my sleep broke and exhaustion set in. After I contracted dengue fever, numbness, burning and tingling sensations appeared. My symptoms were forever coming and going, but always increasing in intensity and adding pain to a new part of my body each time they returned. Until, over the years, slowly, insidiously, it had invaded my entire being, my entire life.
What caused my fibromyalgia?
Since I got my diagnosis in March 2022, I’ve tunnelled down the rabbit hole of research. I may not have had full health or even a full brain at times, but my motivation and determination haven’t wavered. Not once.
Fibromyalgia Resources: After many years and lots of money trying many treatments that haven’t worked, I have found success in Somatic Experiencing, a body of work designed to re-regulate your nervous system. I started with a book that cost me less than £10 (the Mind-Body Stress Reset). Since then I’ve been following the the free YouTube resources by Irene Lyon. Somatic Experiencing doesn’t offer a quick fix (and it may not be a fix for you) but it’s the first time I’ve been able to have a direct, positive impact on my symptoms. I’m in no way affiliated with promoting SE work, it’s just my personal experience of trying it. If you’re on a journey to heal fibromyalgia or any other chronic illness, I hope it helps, and I wish you well. Literally.
I write this almost in fear. Yes, I feel reasonably well in this moment. Not yet fully well like I felt in San Francisco last year. But well enough to function. Well enough to have whole days, day after day, where I can work and play without having to monitor and meter out my energy as the scarce resource it’s been. Well enough that my pain level is so low that I barely notice it. Yet, I know that I’ve been here before, inside these pockets of health and I can’t help but wonder whether the combination of having a diagnosis and new treatment is actually helping me heal, or whether more illness lies ahead. Only winter (when my symptoms usually worsen) will truly tell.
Living, working and travelling with fibromyalgia
Ask the NHS and they’ll tell you there is no verified cause of fibromyalgia, though there is often a triggering event.
It wasn’t the first time I’d been there, on the floor, crying in pain. It was one of the many flare-up I’d experienced over the last 6 years. The difference with this flare? It was bad enough that I finally got a diagnosis. That diagnosis was fibromyalgia.
But maybe more than that, I’m in a good place right now. I feel like I’m recovering. My energy is creeping up and my pain levels are edging down. If fibromyalgia has taught me anything, it’s to spend my energy wisely. So, for that reason, I choose to pour my efforts into wellness. Not just in-the-moment wellness that shows up for a while, but a long-term investment in regaining my health.
Today, I’m back at my bookcase. I have a new edition to add to my shelves. It’s a book, over 1,000 pages thick. I feel strong enough to lift it into place, next to the postcard and the shell, but first I inhale the scent. While it’s freshly printed paper that I smell, its memories that I stir; memories of seeing Machu Picchu at sunrise; memories of flying high over the Nazca Lines; memories of the star-studded sky over the Atacama Desert. The book I place on my shelf is The Lonely Planet Guide to South America. In my hands I have a hot cup of tea. In my heart I hold the hope that I can heal this illness that has plagued me. I run a finger over the spine of the book, already cracked at Peru, and I smile. For the first time in a long time I feel ready for adventure; I feel ready to think about a future that takes me back to the continent I visited over 10 years ago; above all I feel ready to return to myself.
Getting well and getting my life back?
Of course, I went to the doctor. Many times. Each time I was told there was nothing wrong, because that’s what the blood tests told them. Fibromyalgia, along with chronic fatigue, doesn’t exist in the blood.
The doctors will, quite definitively, tell you that fibromyalgia has no cure. To which I call bullshit. I know I can be well again. I know this because I have experienced it. In Miami, at the Grand Canyon, in Costa Rica, and even at times at home in the UK on the greyest of days. All of these periods of wellness have happened within the past 6 years; even in the past 6-months.
I’ve chosen to write this post to explain why I have retreated into the background. Why I haven’t travelled as much as I used to. Why I disappeared from social media. Why I haven’t been screaming excitedly about future travel plans. Or any plans.
I was just experiencing another ‘up’ on what had become a regular yo-yo between extreme bouts of wellness and illness. This ‘up’ wasn’t to last. Another phase of sickness lay in wait.
Move along my bookcase and you’ll find a postcard from San Francisco. I bought it on a trip I took with my dad and uncle. November 2021. Just over six months ago. It was our first long-haul trip since the pandemic closed the world’s borders. It was a three-week trip for me combining the USA and Baja Sur in Mexico. On that trip, I hiked the switchback trails below the rim of the Grand Canyon, clocked over 30,000 steps a day on the steep hills of San Francisco, and wandered through Yosemite National Park. I felt the fittest I’ve felt in years.
My symptoms started in 2016, just after I’d returned to the UK from being overseas for six years. Just after I’d ruptured all the tendons in my knee. Just as I developed a severe vitamin D deficiency, my body struggling to readjusted to the rainy climate. After that, my symptoms worsened each time I encountered a new stress in my life: like when I picked up a bad stomach bacteria in Myanmar; when my mum got sick and died; when I got dengue fever; when my business and income were decimated by the pandemic; when I clawed my way out a toxic living environment; when I bought a new house from the building developer from hell.
That’s my life update. If you’ve been struggling with your own health, I’m happy to chat. I’m equally happy to hear about your travel plans or tips for Peru. Leave a comment below.
Six weeks after my trip to the Grand Canyon I went to Verbier. It was January 2022, and although the trip wasn’t especially high-octane, when I returned, my health crashed so hard I was house-bound for months. Crippled with bone pain, stiffness, exhaustion and brain fog, some days all I had the energy to do was lie on the floor and cry. Even that was painful because my symptoms had become so widespread that my face hurt.
I know there are people out there – fellow fibromyalgia sufferers and doctors – who disagree with me; people who believe that fibromyalgia is an illness for life. I don’t write this to take anything away from you and your illness (or your certificates). Fibromyalgia is real and it hurts. I know. I really do. Some of you may even laugh at my optimism, and you might be right to. It’s not like I’m writing this while currently long-term cured. I’ve had these periods of wellness before. Living with and managing a chronic illness is a different journey for each of us and I’m still very much on that journey.
I have a seashell on a bookcase in my office. It’s pink and cream and curly. Turn it over, and it doubles as a Christmas decoration, with a tiny sprig of holly attached to its seam. I picked it up from a market stall in the Florida Keys, a trip I took with a friend not long after my mum died. March 2019. I think of that trip and I can barely fathom the person I was back then, the body I stood in, energetic, ready to pull over and bounce out the car for a picture opp at any given moment.