No sleep tonight. Too much fibro pain. When it’s bad, it kicks off as soon as I lie down in bed with pains in my arms and restless legs. I’m really tired, I desperately want to get some shuteye, but I couldn’t even meditate in this condition.
It’s hard to describe the pain; it’s a tormenting electrical itch in muscles. It crawls and races, shoots and stabs a zig-zag path through almost the entire nervous system like a fast pulse of hot lava. Joints hurt like they’ve been smashed with a hammer, hurting even more when I bend or straighten them even though I don’t have arthritis or rheumatism. My spine feels like it has barbed wire coiled around much of its length.
Fibromyalgia is an invisible bully refusing to leave me alone. It has no form, no mind of its own, it’s a neurological issue with no agenda and yet I hate it so much my teeth clench in the dark and I want to hit something or someone. Of my four cats, Jasper is the one always by my side at night and he understands I have an affliction three or four times a week. He cuddles close and I try to put an arm around him but I can’t. In the morning I will move slowly for the first two hours, struggling to gain the necessary elasticity of movement to shower, dress and try to do what I have to get done. Fibro brain fog is inevitable after nights like this. I will struggle to think, to name things correctly.
There are those who think this isn’t a disability. They don’t suffer with it and are fatuous twats. I’d love to have one right now nearby to use as a human punchbag, and me the very opposite of a violent person. Being single, nobody ever sees me like this at night and I don’t go out among people if I’m badly affected in the day. Only other fibromyalgia sufferers ‘get it’ and we connect deeply when we meet, without the need for words unless they are self-pitying personality types I’ve no time for. I have no self-pity; it is pointless and self-defeating. Plus, for all I live with a severe disability most are never aware I have, I know I’m a rather marvelous person with talent and imagination and worth. I write all this only to provide knowledge to those who want to read it and learn.
I could take prescription drugs to push me into sleep but I choose not to. Amitryptyline is most commonly relied on by sufferers but long-term use is linked to developing Alzheimers and I’d rather have the pain than lose myself one day. Of course no one knows the future and I might get it anyway but I don’t want to significantly increase the risk. Cannabis is often touted as a miracle cure, which it is not; it does help, it is better than using amitryptyline and opioids for pain relief, but it is not free from unwanted effects. It also remains unjustifiably illegal while GPs can freely prescribe known-to-be dangerous medications.
There are those who don’t like swearing. They tolerate injustice in the world, poverty and cruelty but sniff like someone broke wind when we use words that aren’t polite. I’m generally respectful but I’m rarely polite, and make no apology for directly addressing fibromyalgia thus: you, fibro, are a cunt – cruel, relentless and often arbitrary in choosing when to pick on me and hundreds of millions of sufferers the world over.
What people living with fibromyalgia want from others is to be respected and recognised as having a disability. We still have people suggesting most of us are ‘making it up’ or that it’s easy to fake. They’ve never tried to fake it, of course, because you can’t. But we have to deal with these arseholes spouting crap from time to time. Some are even doctors, though fewer and fewer of them hold out against fibromyalgia being real. Because it is real. It is now recognised by the UK government as a disability but you wouldn’t think so, the way we are interrogated and often humiliated when applying for benefits and regularly after we are first awarded them. These assaults on our validity, conducted by private agencies for the Department for Work and Pensions, always make us suffer flare-ups. We want to work but many can’t, not even part-time, because the nature of fibro means you can’t be scheduled to rotas.
We desperately hope for a cure to be found – a real cure, not the bullshit circulated from time to time on social media. We know what being free from pain feels like. We have good days, weeks even, before fibro ‘flares’ to remind us we are not better and will not get better. I find the most extreme fibro events in my life tend to be followed, after days or weeks, with short periods of calm when I can move better, think clearly and pretend I’m okay. I feel so happy when I’m fleetingly symptom-free, even when I’m not but the symptoms aren’t at their worst. At least it isn’t a progressive disability – it won’t get worse over time – but that’s not saying much, given how bad it is.
My cat Jasper stayed by my side while I wrote this. His silent support, with no judgement, is what we have the right to expect not only from friends and family but strangers too. We don’t always get it, often even. But we won’t stop demanding it.
Thank you for reading. Please, share this blog post with others in the hope of getting a little more understanding and knowledge of fibromyalgia out into the world. And if you have fibro, or know someone affected or afflicted by it, consider buying my book about my experience of living with the disability.
Andrew’s latest book, myfibromyalgia: one man’s experience of living with chronic illness, is out now in all Amazon store territories the world over. The ebook is £5.99 and the paperback £8.99. UK Amazon link.