Welcome to a new feature on The Bandwagon, a series of posts all about living with a chronic illness. I want to explore how it really impacts our lives, in ways those without such an illness could never imagine.
Fibromyalgia is ‘a rheumatic condition characterised by muscular or musculoskeletal pain with stiffness and localised tenderness at specific points on the body’. But it is, of course, so much more than that. Chronic means that it is pretty much forever; I’m stuck with Fibromyalgia for the foreseeable, so I figured I’d better learn to live with it.
My symptoms to date include widespread pain, sensitive points, fatigue, muscle stiffness, sleeping problems, memory problems, irritable bowel, sensitive bladder, sensitive to touch, light and sound, painful periods, and headaches. If I missed any, I blame the ‘fibro fog’. It’s all well and good rattling off a list of symptoms, but how do they really affect our day-to-day life?
I appreciate that Fibromyalgia manifests in different ways for different people, so I’m not going to speak for everyone, but for me, my symptoms mean that I struggle every day to balance what I need to do. I have to think ahead, consider my pain level, tiredness, time I need to take my medication. I can’t just jump up and head out for the evening, or meet a friend for coffee at the weekend; I have so many factors to consider before I embark upon anything out of my normal routine. This is also known as ‘counting spoons’, which comes from the Spoon Theory.
I have to work, it’s as simple as that. Our financial position doesn’t allow for me to lounge around on the sofa all day in pyjamas (more’s the pity!). So getting to work is a priority, as I’m sure it is for many people. I get up, get ready, go to work, come home, have dinner, shower, go to bed. Sounds simple, right? I think many people who live without a chronic illness just don’t understand how much more we have to think about. On a normal work day, I have to drag myself out of bed, since my medication puts me in a deep sleep, and one alarm just doesn’t cut it any more. I have to ease the stiffness in my lower back before I can get dressed, go downstairs – hell, even sit on the toilet. I may have to elicit help from my partner to get my damn socks on, and I’ve had to swap the bras I wear because I just couldn’t stand underwire bras any more. (Now I wear bralettes, and I have to say, they’re pretty comfy!)
That’s just the mornings. The evenings are full of compromises. Do I want a meal cooked from scratch or clean hair? It’s one or the other. Can I do the washing up or will I be yawning my head off by 8pm? Where one person may have single, simple things to consider during the day, I have to think about so many different things that may be impacted by my illness, or actually have an impact on my illness, and the day ahead of me.
Sorry, friends, but that coffee date just isn’t a priority, when I’ve got washing to do, cats to feed, a house to clean. If we have actual plans, I’ll make an effort to keep them, but my illness often gets in the way. After working a full week, plus managing a blog on the side, and doing all the other mundane, normal things like cooking and cleaning and running errands, I’m pooped. I sleep pretty much all weekend, which I’ve been advised against, but sometimes I just can’t keep my eyes open. I don’t often socialise or even go out to eat; I regularly flop around on the sofa all weekend, binge-watching shows or reading. What I need people to understand is that I simply don’t have enough energy to do everything I need to do, and fun things on top.
I guess you could say I’m managing my illness. I’m testing out medication, working with a GP who I actually like, and generally doing what I can to live with Fibromyalgia. But it’s no picnic; in fact, it’s a constant struggle, always compromising and missing out on things, worrying about certain events, about how I’ll manage to travel into London, for example, or walk further than a few metres if parking isn’t available. I hope it will get easier, or at least not get any worse, but this is what I have to deal with. The worst part about it is that people just don’t seem to understand, and expect way more of me than I can manage, or they might not believe me. Fibromyalgia is tiring enough; the idea of me putting this on all the time sounds exhausting.
Do you live with a chronic illness? Get involved in the discussion by commenting below.
If you want to contribute to this feature, email firstname.lastname@example.org.