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 of the car for a picture opp at any given moment.
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 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 will go. All I can do is cross my heart and hope for the best.
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.
Yet, just a few months before that trip, the summer of 2021, I’d been in and out of hospital having all sorts of invasive and exploratory treatments for stomach issues that were so crippling that at times I was bed-bound. I lost that entire summer to a blur of illness. The doctor found the culprit – an H. Pylori infection. He treated it with some pretty harsh drugs. The infection went, my health returned. I hiked in the Grand Canyon. I thought I was fixed.
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.
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.
It wasn’t the first time I’d been there, on the floor, crying in pain. It was one of the many flare-ups I’d experienced over the last six years. The difference with this flare? It was bad enough that I finally got a diagnosis. That diagnosis was fibromyalgia.
Getting diagnosed with fibromyalgia
I’d like to describe what fibromyalgia is, but I can’t really do that because even the doctors aren’t quite sure. Their best guess is a glitch in the central nervous system that leaves you over-sensitised to pain.
Six years might sound like a long time to exist with pain and no diagnosis. However, like most chronic illnesses, 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.
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.
It took six 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 six years of failed diagnoses in between.
What caused my fibromyalgia?
Ask the NHS and they’ll tell you there is no verified cause of fibromyalgia, though there is often a triggering event.
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 readjust 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.
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.
Living, working and travelling with fibromyalgia
This is the part where I should talk about how fibromyalgia has impacted my life, because that’s what a well-rounded article would include. And I could do that. In fact, I could write a whole book filled with examples of how this evil illness wraps its tendrils around everything you are and everything you do until it squeezes the essence out of you. After all, lose your health and everything else walks out the door with it.
Except I don’t want to do that. I don’t want to reminisce over that time I landed in Johannesburg and had to go to bed for two days; or how I’ve dropped off the radar of so many friends because I’ve been too embarrassed to explain that messaging makes me feel sick; or how I had to book Disability Assistance at the airport in Greece because I couldn’t stand for more than 15 minutes at a time; or how I’ve sobbed watching my website wither, its popularity and my income decreasing month-on-month because my arms shake too fiercely to type. I don’t want to write those things because fibromyalgia has stolen so much of my time already. I don’t want to give it a minute more.
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.
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.
Getting well and getting my life back?
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.
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 six years, even in the past 6-months.
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.
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.
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).
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.
Still, I remain motivated.
Today, I’m back at my bookcase. I have a new addition 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 ten years ago; above all, I feel ready to return to myself.
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 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.
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.
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8 thoughts on “Fibromyalgia – Life, Travel & Recovery from a Chronic Illness”
You are an inspiration Jo and I have loved living vicariously through your extensive travels. Always knew you were a force to be reckoned with during our ‘Tesco days’. Sending you hugs and strength to enjoy the good times and fight through the poohy times 💕
Hi Jane, so lovely to hear from you!!! How are you? And thanks for your lovely message. Hugs back at you! I miss the folks from the Tesco days! Fun times.
Sorry to hear about your challenges. This is just a thought but perhaps check out Alex Howard, his Reset programme might give you some ideas, seems to have good results with a number of chronic illnesses. What he offers might expand on what you have been experiencing with the Somatic work you are doing. You will find him at Alex Howard.com. I did his Reset Programme earlier this year and have found it really beneficial. Sending good wishes on your healing journey.
Hi Lyn, thanks for the comment and suggestion. I’m familiar with Alex Howard’s work. It’s brilliant and, in fact, it was his stuff that made me realise fibro isn’t an illness for life, contrary to what the doctors say! Good luck with your own healing.
Howdie. At aged 67 I developed something called Polymyalgia Rhematica and autoimmune disease which is sometimes confused with Firbromyalgia. I got this as a result of my second Covid vaccination and I know of two others guys from my gold club who say the same (although it would never be formally recognised as the cause). It normally affects women over 50 (1 in 1200) and in our case it is 3 guys in a golf society of 70. Can’t be a coincidence. The point of this note is that I got substantive amounts of information and help from a site called Healthunlocked which has a sub section for Polymyalgia and I think for Fibromyalgia as well. It is a site for fellow sufferers who share their experience and knowledge. I have found it invaluable. Having missed the last couple of years of travel we have ventured out again this year, mostly this country but also to Spain. Hope it all goes well for you
Aww, thanks Len – all suggestions for improving my health are very welcome. Glad you’ve been able to do a bit more travel. Hope your own symptoms ease. Take care.
you are an amazing and brave woman i am sending you all positive and healing vibes. this story is really poignant and your writing is riveting. wishing you all the strength to keep your spirits, determination and resilience. also big hugs
Hi Liz, how are you? Thanks for such lovely words (and for the hug!) I’m remaining positive. Got to get back out there travelling. It’s good motivation 🙂