And so March 2026, the month of my ten year fatigue-i-versary, has started with a crash. A big one. The worst and longest reduction in ability for at least 3 years, that is purely coinciding with CFS symptoms, not those of an additional virus. (For me this is sore, tight glands and generally feeling shit, but no snot). And no, I don't know what caused it. When you have ME/CFS you have to come to terms with not knowing. Theories can breed like maggots, but honestly, I don't know what happened 10 years ago, and I don't know what happened just now. I feel like a bird who flew into a glass window. Except this time I wasn't anywhere near flying. Just plodding, pacing, constantly checking in on my internal battery levels, and having compulsory daily naps even if I didn't feel like I needed to. So, it was more like being dumped by a wave. An invisible breaker, with the only warning sign being a crest of feeling unusually well just before the crash. (Apparently this is a common cfs thing. But I had forgotten to be wary, and wishful thinking had me hoping the small surge was a step upwards in ability, not a warning sign).
Recent crash in data, showing about 50% loss in ability for last 2 weeks +. Don't think I've had a purely cfs-related crash this bad since 2020.
I could blame myself for being an idiot and "doing too much". I am still prone to getting carried away with what I want to do, rather than really listening to my body. I did have a big week prior to the crash, camping in my little van at Fortescue Bay and trying to get things done in the garden during harvest season. But it wasn't anything too unusual compared to the last few years. I had been able to do quite a lot. I don't think I was ever at more than 10% of my pre-cfs ability, but it was amazing compared to being house or bedbound. I was getting away with 2-3 kilometre walks (if they were flat, slow and not every day). Going to Cradle Mountain and hosting wwoofers at my house last year were two huge things I couldn't have dreamed of previously. They stretched my limits and exhausted me, but I didn't crash. I am always probing the edges of my ability, like walking alongside a bog, blindfolded with a stick. Where is the edge? What happens if I push just a little bit further? I try to find the balance between living my life within the fullness of my limited capacity, and mostly erring on the side of caution. And I seemed to have been successful, up to now, in levelling out the push crash cycle. My recent crashes were only a day or two long, rather than weeks, or months or years.
So having the shackles tightened again, and it lasting more than a few days, has been a rude reminder of how miserable me/cfs can be. Dispiriting, frustrating and scary. I have felt tempted to call the last two weeks "a write off", because I had to cancel my plans and I can't make any new ones until I feel better. I didn't get things done around the house or garden that I wanted to. But I don't know how long this crash will last, and I don't want to call any of my disabled life a "write-off", nor that of anyone less able than me. If there was a magical button to end this disease, I'd press it without a moment's hesitation. But my life is still worthwhile.
The last 10 years have been very different than I expected. I won't ever know all that I've missed out on, had I not got sick. All the 'might have beens', both good, bad and their own form of challenging. I don't know what I would have been doing for a job. Maybe I would've had kids. Maybe I wouldn't. At 43, that window has pretty much passed me by. I've been single the whole time. I've been forced to be less social than I want to be. But I've often appreciated the slowness. I've done a lot more meditation and yoga than I would have otherwise. I had a very nice time with my magnifying glass looking at leaf litter by a creek the other day. It has been an opportunity for deepening. And I've also done a lot more mindless scrolling and watching easy TV. I've missed exercise the most. And bushwalking for days, away in the mud, sweat and wonder, far from addictive screens and city noise. I think it's inarguably, a diminished life. But it's still worth living. It's given me more humility and compassion. I take much less for granted these days. I have so much gratitude for a safe place to be sick. And that I've been believed and supported by friends, family and the online cfs community.
I haven't tried any "cures" for a while. I tried nicotine patches last year. A friend of a friend was cured by them apparently. Improbable, I thought, but cheap, easy and worth a shot. They made me feel quite awful. The low fodmap diet actually did help my IBS, but not my CFS. Another friend of a friend enthusiastically promoted another "mind-body solution". I read the book from the library with all the miraculous testimonials of recovery. I gave it a go for 2 weeks. Nothing happened. I hereby declare myself a failure at curing myself from cfs with the power of my mind. (In other words, I don't think stress, trauma and mental health are a big a part of the puzzle for me, as they are for some people). However, if a scientifically proven cure with a high success rate is found, I'm sure I'll hear about it.
So. Here I am. In a bit of a hole within a hole. I don't have any realistic hopes for a full recovery in my lifetime, but I do hope I can get better from where I am right now. I don't think I have anything new to say that I haven't written a post about already, with more nuance and detail than in a short-ish 10-year summary. I'm not sure how long this particular crash will last. I'm back to living one day at a time. Torn between having to rest and wanting to do things. No swims or camping trips this March as I don't feel well enough. Staring at a screen. Feeling excruciatingly vulnerable to global and local events beyond my control. Wanting to be free. Knowing how incredibly lucky I've been. Looking after myself as best I can.
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