It’s been almost three years to the day that my symptoms first started to get the better of me. It wasn’t until then I realized I had been living in pain quite some time, I had actually been living with my illness for a very long time. You see I thought that was normal, to me this was just what life felt like. It wasn’t until that day that the reality of what I was living with started to sink in. And even then, I don’t think I realized quite how bad it could be.
It took almost another year after the symptoms first started to really show themselves to get a diagnosis, but before that we’d already started to have a little inkling into what was going on inside. And it was frightening. It was unknown territory. It was unfamiliar, unheard of, something we had no information on. When they confirmed our suspicions – fibromyalgia – things changed. It sounds dramatic but life as we knew it had to change, and so it was time to make some adjustments.
Three years later, and I can see it in my family and friends faces – they don’t ask, they don’t say it, but sometimes on the bad days I can see them thinking “Aren’t you used to this yet?” “Hasn’t that stopped now?”
And the answer is no. I’m not used to it. It hasn’t stopped. It won’t stop, and every day brings me something new to contend with, some new symptom, or situation or emotion. Each of these things makes a situation feel unique or brand new, and then it’s like I’m right back to the start again. This is my life now – because fibromyalgia doesn’t stop.
I can’t “get used” to my condition when every day the symptoms change – how do you get used to something when every day a different part of your body hurts? How do you adjust to that when you’re in pain in parts of your body that you didn’t think could feel pain? Pain isn’t this agony you see on TV, it’s not just the screaming and the writhing and the moaning on the floor. It’s never feeling comfortable. It’s having to find clothes that don’t hurt when you wear them. It’s not knowing whether you will be able to hug your loved ones without wincing in pain. It’s this constant nagging, gnawing ache and there’s nothing you can do about it.
I can’t “get used” to it when I’m so exhausted from the fatigue that I can barely wrap my head around what it means to be ill. How do you come to terms with something when you’re so tired that the words don’t make sense? When it takes all the energy you have just to make it through what each day has in store for you, how do you preserve any energy to focus on adapting? Fatigue isn’t just like being tired – I won’t feel better after a good afternoon nap, a good night’s sleep won’t cure this, nor will a Starbucks jolt fix me. Fatigue is when even your little finger feels exhausted, when you can’t talk to someone because all that comes out would be word soup, and when lifting your head is pretty much all the strength you have left. Fatigue is the demon that lures you to bed yet offers you no relief in the sleep you find waiting for you.
I can’t “get used” to being ill on the days when my body feels like it’s racing towards death, and the depression devil in my brain is up there, encouraging it to cross the finish line. How do you keep going when all you want to do is quit, and the voices in your head are urging you to give in? How do you stay positive when depression is in your head burning positivity to the ground? My depression is not just sadness, it is not moodiness, nor is it attention seeking. At the best of times it is self-doubt, disquiet, distraction, unanswerable questions and endless worries. And at the worst, it is nothing short of mental torment. Emotional highs and lows, panics and paranoias. Stresses, fears, tears and woes. It is everything that has ever gone wrong for me, it is every failure and every mistake, everything I should have done but didn’t, everything I should have done better, and every vision of the person I wish I could be. It is everything I have to lose, and everything I fear I will never gain. And it is all of these things at once.
I can’t “get used” to any of the numerous symptoms that affect my daily life, for the pure fact that they are numerous. They change from one day to the next, meaning that life for me is a constant walk into the unknown. How can you adequately prepare yourself for the situation when you never know which part of your body will spasm, tremor, seize, or go numb at any given time? How can you make any semblance of a plan when you don’t know whether you’ll be too weak to stand up in the morning? The list of symptoms of fibromyalgia is an ever-growing list, and at times it seems as though I’ve experienced almost every single one of them personally.
The only thing I can do is take each day as it comes, listen to my body (as well as my doctors!) and do what my body asks of me – it really does know best. I’ve learned to live the best way I can, to get the best quality of life that I can. I’ve learned to put on a brave face, and not show the extent of my symptoms, but believe me, just because I don’t show them doesn’t mean they’re not there. I may never get used to it… but I’ve certainly learned how to live with it.