A word of warning: this post is basically a whinge fest so, if you’re not up for reading a ‘poor me’ lament, maybe skip this one.
Tonight is all about me being a negative Nancy, which is the complete opposite of the typical Monday post. This past week has been particularly tough. The cold has decided it’s here to stay and, with rain mid-week, every possible ache, pain, or annoyance flared up and left me almost useless from Thursday onwards. I spent all Friday and Saturday in bed, most of it asleep. Even though I’ve managed to start this week with a few hours out running errands, I still feel all-over crummy.
I’m over it. I try to remind myself when I feel like this that I’m better off than so many others. I’m not likely to die from ME/CFS, I’m not confined to a wheelchair or unable to feed myself, and I will most likely get better with time. But that doesn’t mean it doesn’t suck. It does. It sucks when I have to cancel plans with friends, or miss fun outings because I simply don’t have the strength to get out of bed. It sucks when I drop and smash my mum’s heirloom vase because my hands just stop working. It really sucks when I have to call my health insurance to tell them my payment will be late, because I had to pay a $500 dental care bill they didn’t cover—dental care I had to have because, like many others with ME/CFS, I grind my teeth.
I hate being wide awake at 4am, but being unable to keep my eyes open at 2pm.
I hate the sudden shooting pains in my joints and muscles.
I hate the 24/7 headache that sits just beyond annoying but not quite at ‘worth medicating’.
I hate feeling stupid because I mix up words, or forget them, or simply can’t get them out.
I hate not being able to taste my food, not being able to read for more than a half-hour, not being able to swim even three laps of the pool without becoming breathless.
I hate telling people about it and then having them say “oh yeah, my cousin is really tired all the time, I bet she’s got that too”.
I hate that I have to stay positive all the time, push myself through the day every day, plan for a future I have no idea how to plan for—I can’t even get through a week knowing what’s going to happen, planning next year isn’t really an option at this point.
Most of all, I hate feeling like I have to apologise for myself constantly, as if I’ve done wrong. “Sorry, I can’t, I have to sleep instead.” “Sorry, that afternoon I have to rest because I’m working for four hours that night.” “Sorry I ruined your pillow, I wasn’t expecting to tip red wine all over it.” The apologies and the feelings of inadequacy are the worst. Like having to turn down a great job because I’m not capable of working full time at the moment, and then having to tell everyone I’d turned it down.
But the worst? The worst is trying to explain to people around me why I can’t. Because they don’t get that I really am so tired I can’t physically move. So dizzy the walls are spinning and the floor has fallen out from under me. So ill I can’t work a nine-to-five job, even though the drone of the work week seems almost as exciting as an overseas adventure.
Sorry for the pity party.