It’s a rainy day, and I’m tired and achy and whiny and cranky and I should be doing a million different things but all I want to do is nap but then I won’t sleep tonight and I have an appointment tomorrow so I have to go to sleep early tonight and blah blergh ugh.
On top of my usual rainy day ennui, I’ve seen mention on social media of a new article out calling Spoonies “a tribe of mostly female forever patients” and generally (and also erroneously) diminishing the effects of several diseases that can cause severe and life-altering pain, amongst other life-threatening symptoms. Apparently, she reduces hEDS to just being hypermobile, says POTS is just being lightheaded, and reduces endometriosis to just being bad menstrual cramps.
I’d hate to find out what she thinks of ME/CFS and Fibromyalgia.
Since I’m having a rough day, and the mentions of this article have been the only things that have inspired any feeling in me besides Ugh and Ow, I’m here to talk about it. Well, to talk about the day I’m having, really. I don’t talk about these days often. No one wants to hear it. Those who care don’t want to know when I feel poorly because they don’t want me to feel poorly. And those who don’t care, well, they don’t care. This is just one reason why, unless my feeling like death on a cracker somehow interferes with your day, I’m not gonna talk about it. Not to mention, talking about it means facing it, and acknowledging it, and making it real. Many times, doing that just makes it worse. I mean, think about the last time you had a cold. You try to find something to distract yourself because then you don’t notice your symptoms as much, right? But as soon as someone asks you how you’re feeling, that tickle in your throat kicks up and you’re coughing up a lung again. It’s the same with Spoonie days.
So here goes.
It’s raining. The picture above was taken just a few minutes before I started typing. It’s almost Fall, so the daylilies have stopped blooming. I’m a failure at remembering to fill the feeders, so they’re empty and the birdies are off trying to stay dry somewhere. I slept okay last night, in spite of multiple interruptions from leg cramps that nobody knows from whence they came. (Why is it “whence” and not “wherest”? That’s research for another day.) I have a mild headache that’s been slowly growing since I woke up. My upper back and shoulders up into my neck have been aching for days. I suspect my desk is not as ergonomically correct as it should be. The pain goes down into my hands when I type, sometimes, so that’s a clue. My mind is caught in a loop of things I should be doing vs chaotic entropy. That’s anxiety vs depression for you. It skitters away from actual productivity like a cockroach from the light, then bravely turns around to face God’s flashlight, only to then want to hide under the covers and sleep. Under the covers is where the guilt hides, though. How can I sleep when there is SO MUCH TO DO???
Throughout all of this, the idea that a couple of Advil and a cup of coffee might help has only just occurred to me. My mind is so busy ticking off all of the things I should be doing, then trying to run away from them all, that it forgets that possible help is nearly at my fingertips. My desk Advil (as opposed to my bedroom Advil and my TV room Advil and my car Advil and the Advil I keep in my mom’s apartment) is literally at my fingertips. Okay, the coffee is further away and has potential unwelcome side effects, but the Advil is right there. And I sit here, typing about it, still not having taken any.
Okay, I took the Advil, so let’s see what happens in twenty minutes (or two hours) when it takes effect.
This is a bad day for me. My anxiety wars with the flare in my body, creating temporary depression because of the guilt and frustration I feel at not being able to be the human I want to be.
And I’m SO FUCKING LUCKY.
There are so many folks out there who will not feel better with a couple of Advil and a cup of coffee. Comparing my pain to theirs does not diminish mine, but rather brings theirs into sharp relief for me. I may not be able to balance my checkbook or do my floor exercises today, but I will drive myself to my cardiology appointment tomorrow. After that, I’ll push the trash out to the curb for pickup on Tuesday. I will pay for that on Wednesday, and possibly Thursday (depending on how heavy the bin is this week), but I’m not working, so I can recover. I may not get the birds fed this week, but my cats will forgive me as long as I feed them.
I am a Spoonie, and I can understand why this woman who has obviously never spent a rainy day in bed feeling guilty about not getting the checkbook balanced would look at me and scoff. My pain can not be seen on an x-ray. My anxiety does not make me overtly act out. I appear to be exactly what she’s talking about: lazy, whiny, and dedicated to being disabled. But I couldn’t care less what she thinks of me. I will take her words and let them wash off me because worrying about her for my sake is ridiculous. I don’t need defending.
I will NOT, however, stay quiet while she tries to diminish my sisters who suffer from FAR worse than I do. For every day they’re stuck in bed in pain and drowning in depression, I have a week of good days where I can do most of the things I want to do. Every condition she mentioned she either downplayed or just outright described incorrectly. She obviously did no research at all into anything she said to make sure she was factually correct.
Hey, I’m no better. I didn’t actually read her article, either. Then again, I’m the lazy one, right?
Mrs. Whozeewhatsis 