Last Friday at 2am in the morning, I was ringing 111, my whole body vibrating with a fiery pain, a pain I’d come to recognise as the zenith of it, at various points during the previous month. Not knowing what the best action was, 111 asked me to hold on for a clinician to ring back. So, lying on the floor of our media library (it’s really a dining room that has little dining going on), trying to get into some position that might be slightly less painful, I once again took more pain relief than I should’ve, while waiting for a call back.
The call came, they said there were two appointments that day at my GP, and I had one of them. My hope was they would give me something which would just get me through the three days of Burnham Book Festival – which I’d spent the last six months organising.
Then I got a message. A doctor will call you next Monday after 6pm - a whole day after the festival finished. I was distraught, in pain, unable to function. I called the GP, furious. The receptionist tottered off (she presumably just called through, but in my head she tottered down the corridors) to the doctor, then tottered back. The doctor can’t do anything more to help you. If you’re that bad, go to A&E. (It was more heated than this and I cursed, not at her, but at my pain – not that she saw it this way – before telling them I don’t understand how CQC can rate the surgery good).
So, it seemed like the Book Festival was off for me, which I’m certain only added to the physical pain, because I would be missing the outcome of this thing that I'd been living and breathing for so many months, that I'd been so integral to creating. It was totally gutting. Instead, all I could do to contribute at the last hurdle, was focus on the social media side of things. But by 3pm, even this felt impossible, every key-hit, an electric jolt of pain. Alone at home, I was ringing 111 again and they were telling me to go to A&E. I rang Beck, and she came back at 4pm and we went to Weston General.
We spent the best part of five hours waiting. Unable to sit, unable to stand, not taking painkillers because they told me I had to have a blood test. Eventually they gave me half a dose of oromorph, which did very little – well, it stopped me wanting to jump off a building. They sent me home with a bottle of oromorph and a letter for the doctor for my Monday appointment.
The next day, I took oromorph prescriptively and it got me through the festival - that and the kind support of the team. Most people said there seemed to be a three second delay in conversation, but at least I was able to get there. One of the authors, David Bedford, a writer of Beatles books has also been diagnosed with fibromyalgia. He shared his journey in his talk.
“They diagnosed rheumatoid arthritis,” he said, and a woman in the audience gasped. “But three years later, they said it was fibromyalgia.”
“Thank God,” the woman said.
Could she hear herself? I was sitting there, not long after taking my second dose of oromorph, still in pain, unable to sit still, my frame being crippled by my tightening muscles, but smiling, trying to be a positive face of the festival.
“I worked in insurance,” David Bedford continued. “The doctor said, I need to quit the job-“
“Why?” the woman interrupted – he didn’t respond – just to let us know her opinion. Why would fibromyalgia mean you should quit your job in insurance?
I spoke to David after. He’s been living with it for a long time now, decades in fact. I was at a low ebb, it’s been the most difficult flare in the five years since my diagnosis, and it’s hard not to feel like I’ve got a progressive illness, even though it’s not supposed to be.
“Look, Lewis,” he said. “There’s nothing you can do about the pain. It will always be there, but do
what you love and distract yourself from it.”
It hit me hard. In my own story – and we're all writing our own constant novel – it felt like a chink of
realisation, a meant to be moment.
I explained how I’d climbed this big mountain last year and spent a month hiking at high altitude, and how to some people it’s like: “how can you have fibromyalgia and do that?”
“That’s the age old line, isn’t it? It's why they call it the invisible illness. Since being diagnosed, I started writing about the Beatles. I’ve written several books, I’m regularly travelling to festivals all over the world and now I’m playing in the Quarrymen too.”
I thought back to the previous month, largely housebound. When I started to have more movement, I picked up the laptop and began writing. There was one period writing the play, when I wrote for six hours straight and hadn’t once thought about my pain. It was like it had disappeared – and I’d been in agony. I even forgot to take painkillers and survived.
The same went for the Himalayas. I was in pain, I experienced some minor fibro symptoms, but the beauty of the experience distracted me. At times, I almost felt normal.
That experience, of course, wasn’t that simple. I had got myself to a point where I wasn’t eating things which cause me problems, dairy, gluten, mostly free from sugar. I was exercising – just hiking, very little else, a few stretches – almost daily. I was working as little as I could afford to. I’d lost weight and was ready for it. I did the things I needed to do. I was still in daily pain, but my mind and body were much stronger.
After the trip, I tried to keep the exercise and diet up, but winter comes and it’s harder to get out and about – and gym exercise often triggers flares, I can’t run for that reason – and then birthday comes and Christmas, and the bad food stuffs come back in. I put on winter weight. By the time it got to March, I’d created a bodily environment which was not great for fibromyalgia. I was of course back to work, and the Book Festival was at the peak of its stress. I had no time to write. One fairly innocuous trip on a boat in Amsterdam was the last straw. It triggered the worst flare of my life.
But maybe it’s all happened for a reason. I’ve written a play – I don’t know whether it’s a good one, but I’ve written one. And then at the Book Festival, crippled by fibro, surviving on a strong opiate I really don’t want to be on, I have this conversation where someone says the magic words: do what you love.
Life is hard, we don’t always get to do what we want to do. Unfortunately, or perhaps not, I find my body is making it even harder for me to make myself do that stuff. It’s like I’m being directed, manhandled almost, into doing what I love.
Painkillers are not the antidote to pain. Doing what you love is.
(Above photo courtesy of Mike Lang)
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