Dear Fibromyalgia,
You woke me up three times last night. When sleep finally came, my careful, conscious positioning of my body went out the window. And so, you woke me with pain. When I finally woke at an appropriate hour, you greeted me instantly; my constant, demanding companion. Over the night, carefully-maintained joints and muscles have stiffened, the previous day’s physiotherapy undone.
I feel like I haven’t slept – non-restorative sleep is typical with fibromyalgia. After nearly 17 years, I am used to it – but that doesn’t mean I have to like it.
I move slowly, with purpose, all to prevent spasms and pain that take my breath away.
It takes me half an hour to brush my teeth and take my medication most days.
If nothing else, you have taught me to be patient with myself and not allow my movements to be dictated by the tyranny of the clock.
Every morning is the same: coffee, automatic back massager, pain relief and yoga.
If I have to be somewhere, I need to allow myself three hours to manage your demands on my body and mind before I can leave the house.
If I have an appointment at nine in the morning, I have to get up at five; not easy when you wake me throughout the night with demands as urgent as any newborn’s.
After this slow, steady routine of attending to you – if I am lucky – I may be able to go about my carefully planned days. You don’t let me leave the house more than a couple of times a week; to do so would be to provoke a ‘flare-up’ – an incessant, raging, onslaught of symptoms as wide-ranging as pain, exhaustion, ‘brain fog’ that seems to reduce my cognitive capacity to that of an infant, and a complete inability to regulate my body temperature – that confines me to bed or sofa for days, weeks or even months at a time.
Most days, I amuse myself at home, a semi-lockdown with no end in sight.
I write, I paint, I have way-too-much screen time. I chat with other ‘fibro warriors’ online, the internet an essential utility for those of us with a life sentence of chronic pain.
The bond of shared trauma inflicted by fibromyalgia runs deep. We share tips to manage you, particularly self-advocacy with medical personnel; some medics still don’t believe you exist, insisting the pain is ‘all in your head’.
Sometimes we just commiserate with each other. When the pain is dialled up to 11 and we can’t think, we simply offer each other an ear, and ‘gentle hugs’ through our screens.
Some days, I do manage to get out. I love to visit my best friend, and her children – my godchildren. They are a joy. Curious, clever, beautiful, energetic and affectionate children, full of potential and possibility. They also wear me out – fast! It often hurts to play with them but, for as long as I can, I will. I relish their weight as they climb all over me, knowing my days of doing this are numbered. I will hurt even more tomorrow, but that moment of snuggling or laughing with a much-loved godchild is worth it. I cannot run with them. I cannot chase them, or kick a ball with them, thanks to you, fibromyalgia. But you haven’t taken this from us. Not yet.
I can’t stay out for more than four or five hours before the exhaustion, or the pain, hits me like a tidal wave and I have to head home. Then begins the nightly routine of yet more medications, heat pads, splints, stretches and waiting for all of the above to alleviate the pain enough for me to fall into another fitful, broken sleep.
The scary thing is: I ‘don’t look ill’. I put my crutch down and I look like a healthy person. Yet every day is a battle.
On my worst days, just getting washed and dressed is impossible. And I am not alone.
According to the King’s Fund, 15 million people in England alone have a long-term health condition. Many of them, like fibromyalgia, arthritis, chronic fatigue syndrome and long COVID, are invisible.
Sufferers. Survivors. Warriors. Whatever we call ourselves, we often feel invisible too. But we aren’t invisible. I see you, fellow warriors. I see your bravery, your tenacity. Keep fighting the good fight, comrades.