There are two exhibitions coming up that I really want to see. Both of them are in London museums, and are easily reachable by public transport. The logistics of planning such an innocuous day out should be straightforward: it’s currently more akin to planning an overseas trip for ten people who barely know each other. Going on the weekend will guarantee me a chaperone, but it will also increase, tenfold, the number of moving obstacles that my dystaxia will have to deal with. Choosing a quiet midweek slot will reduce the physical exertion (movements won’t have to be so controlled: more places to sit and rest) but I’ll be less likely to secure the company of someone who can help me if, or when, my body starts to shut down. I’ve finally realised that this is my new reality. Denial has turned to grief.
Only a couple of people had asked me how I felt about the Fibromyalgia diagnosis, so I hadn’t really allowed myself to think about it properly. After all, I was merely putting a name to the symptoms that had been plaguing me for years; it wasn’t as though I had anything fatal, plus I’d been living with another chronic illness for over a decade. I wasn’t really experiencing anything new, was I? I had waved goodbye to spontaneity a long time ago, literally living my life around the best case/worst case potentialities of my menstrual cycle. I would usually have one good week, two bad weeks and one Hell week (the shedding of the lining, and the internal bleeding). What I had been failing to realise was that it was a luxury I was no longer afforded, thanks to my new ‘houseguest’. The minuscule guarantees that had kept my life relatively stable could no longer be relied upon – that one good week no longer existed and the dreaded ‘payback’ was always lurking around the corner.
I had always used a road map analogy to demonstrate how I managed to stay so ‘happy go lucky’ most of the time, while living with a debilitating illness. I would explain that said illness was like getting slowly nudged off a path, whereas something sudden, like Meningitis, was a wrecking ball – pummelling you straight into the Valley Of The Evil Cats (or somewhere equally as heinous) and leaving you to fend for yourself amidst a cabal of violent felines. Chronic illness, however, is much more subtle. The symptoms often build up over time, rather than being dumped on you at once; so, even though you’re not well, you’re still on the same path, as far as you know. So the nudges keep coming, and you accept them. You’re on the edge of the path, then the grass, but you can still see your destination. Then the thicket gets higher, trees appear: the destination incompletely obscured, but you’re in a forest and that’s survivable, right? By the time you’ve been nudged to the edge of the trees, you can barely remember what the original destination looked like; and, more often than not, the forest’s edge seems like the place where you ‘always lived’. But the nudging doesn’t stop there. The green wilderness soon turns into tundra, and you can no longer claim that this harsh and almost inhospitable land was the place you were aiming for: but at least you’re not in the Valley Of The Evil Cats…
I surprised myself by how reluctant I was to even use the word Fibromyalgia
That was how I rationalised how ‘easily’ I was dealing with this new set of symptoms. That is, at least until I realised that with all the will (and the right foods, right exercises and right supplements etc) in the world, I simply could not control what would make the Fibromyalgia flare up. Incidents such as having to spend three days in bed because I had the audacity to go roller skating AND see a movie on the same day, or having to sleep for half a day because I had the bright idea of clearing and refilling the dishwasher, were causing a cognitive dissonance that I had no idea how to cope with. Add to all of that the fact that arbitrary things like low air pressure can blindside me at a time when I am feeling relatively well, and you can get a feel for the problem.
I’m not sure if I was expecting a miracle, or something, but I surprised myself by how reluctant I was to even use the word Fibromyalgia verbally. Written down, not a problem, as I could easily emotionally distance myself from what was showing on the page: but there are still so many people that I’ve not been able to tell directly – hoping instead that they’ll see a couple of Facebook posts and figure it out for themselves. Why? I often told myself, and still do sometimes, that I essentially wasn’t ‘ready’ to deal with all the questions, pity and misguided recommendations. However, it was becoming clear that I just didn’t want to deal with the fact that my life had gotten worse.
There. It’s out.
My life is worse than it was. Endometriosis is Hellish, but the addition of Fibromyalgia had turned me into the Devil’s own scullery maid. The lack of research along with the vague, diffuse, and often contradictory, treatments weren’t exactly providing me with hope of returning to the decadence of my one good week. But all the denial I can muster will not change any of that.
I have no choice but to let that life go.
I have to accept that, perhaps for the rest of my time here on Earth, there will always be days when my body will just say ‘no’ to every suggestion, regardless of how Lilliputian the request was. I have to accept that planning ahead means planning the sacrifices and recovery time as well. I have to accept that there are just some exhibitions I was am going to have to miss. But, most importantly, I have to accept that I have adapted before, and I can adapt again – regardless of how much I miss, what now seems like, the sheer opulence of my old life.