I’ve learned a lot of people accept pain. They just go, “Oh, I have pain!” and take painkillers, perhaps going to the doctor to see if there’s a diagnosis attached. And then they accept a diagnosis like it’s their fate. Sit back and wait for it to get inevitably worse.
I don’t get it. They surrender activities and joy and hope. Just because a doctor says your condition is lifelong doesn’t mean your attitude has to be. Fighting doesn’t mean you’re guaranteed a 100% turnaround but even if you only see a two per cent improvement, that’s a win. And you might see better than that. What’s more, not surrendering makes you mentally and emotionally stronger. When you give up, you only get weaker.
Don’t get me wrong – when it comes to terminal prognoses, I’m not saying your attitude will change the fact that you’re in the endgame, but a fighting spirit to the end is surely better than surrender when you might have many months or even years of life left. The same goes for progressive diseases: you are certain to get worse over time, because that’s how the illness works, but it doesn’t mean you need to act like it’s already pretty much done its job. And when it comes to many chronic pain conditions, while they mess with our lives and hurt like hell, they don’t actually kill us. If we keep moving, keep fighting, we have every chance of reclaiming some of the power illnesses like fibromyalgia steal from us.
This isn’t some new age con article telling you if you only believe, you can actualise some kind of miracle that defies the biological impact of whatever ails you. I’m not telling you your illness is your fault because you think the ‘wrong way’ – good grief, no! That ‘think positive’ stuff or things will go badly really, really does my head in. It’s like blackmail and blame rolled into one, stinking package. No, you are never to blame for being ill, while having depressed and bleak days, they’re part and parcel of living with a ton of shit most other people don’t have to deal with. What I am telling you is, your attitude matters. When we fight against overwhelming odds, we might know that we will ultimately fail (certainly true with terminal and progressive illnesses but not with chronic long-term but non-degenerative, non-fatal health conditions) but we can either go through our lives doing everything we can to make the most of what we’ve got and where we are at, or, you know, we can slump to the sofa and decide that’s it, life is over.
I’m currently attending physio every two weeks, doing what are small exercises every day. Some of them feel rather silly, if I’m honest, but I know they’re about improving my capabilities and besides, nobody is watching when I’ve got my legs in the air or I’m crushing a cushion between my thighs. I’m carrying a tennis ball with me everywhere I go, squeezing it with my hands whenever I’m waiting at the doctors or sat chatting on a friend’s sofa. I’m doing all this because four years of taking (accidentally but negligently) misprescribed steroids caused atrophy of muscles and tendons. You don’t feel it happening, the shortening of tendons, the weakening of muscles. You only notice when you come off the steroids, in my case some months later.
I don’t expect to get back the energy and flexibility of a 20 year-old but am expecting a big improvement because I’m working hard to achieve it. And of course, with fibromyalgia, some days I can’t do anything at all and that’s okay. I accept that I have to rest when my body insists. But the physical weakness that resulted from the steroids makes fibro symptoms more intensely impactful – and fighting is required to make my body better able to live with fibromyalgia and work for me rather than against me.
Even if I didn’t have the effects of what was, albeit taken in good faith under the supposedly watchful eye of a GP, long-term steroid abuse, fibromyalgia does benefit from exercise – even if you have to take painkillers, initially, to get through it. Small hits, not marathons. With many chronic conditions, you do too much and the payback is a bitch. I learned that it’s fine for hospital consultants to stress exercise is good for fibro, but if you end up flat on your back with chronic fatigue for three days after doing half an hour on a cross-trainer, where’s the benefit of that half-hour? Far better to do five minutes on the machine, three times a day, until you feel able to do a little more. Same goes for any form of exercise. Twenty minutes in a pool, not an hour. A fifteen-minute walk, not two hours. And so on.
There’s no point looking at the international recommendation to do half an hour of brisk exercise every day if it’s going to break you. You aren’t ‘most’ people. You aren’t average. You aren’t the majority. You have an illness, so you do what works for you – but you do it, you don’t wave the white flag and make your sofa your home until the day you die. You don’t respond to pain by eating an entire cake, only to then feel worse because you’re piling on weight. No, you get up, you do what you can, and you swear out loud at that mutha tormenting you if it helps you get where you want to be.
I guess what I’m wanting, most of all, to say is, don’t be a quitter. Don’t just accept your ‘lot in life’ – I hate that phrase – and, whatever health problems you have, there are ways to make your life better than just surrendering, which will only make it harder. Find those ways. It might not be exercise or squeezing tennis balls. It might be walking or phoning friends or eating better food, going to the theatre or sleeping on clean sheets with your favourite blanket. Involve all your senses in your life, not just your pain receptors. Touch, taste, hear, smell, see. Be kind to you but don’t be a pushover for pain. Don’t be defined by your diagnoses.
Behind your health problems, you are still there. Your chronic pain does not erase you. You matter. Never forget that. If other people are going to believe you matter, you have to believe it first. Get feisty. Get angry. Breathe. Live your life. Show others what courage looks like.
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.