#LongCovid is weird, part 4,792:
Mom: My covid toes are flaring up again. Are your toenails coming off in sheets, too?
Me: Like mica? Yes, it's a bit gruesome tbh.
Mom: They were back to normal for a bit!
Me: Yup. And now they're not.
"Like mica" sounds funny, but it's really becoming a safety issue in my case because my sensation in my feet is compromised enough that I can snag a layer, not feel it, and, well... have a bloody mess on my hands. And in my sock, come to that.
And tonight's phantosmia is.... wet dog! I refuse to divulge how long I checked my sick, not-especially-mobile cat over to make sure it wasn't him before realizing no, not coming from him; that smell is wet *canine*. I haven't had a dog in 12 years.
The fun continues. Just dozed off for 20 minutes and woke up with a massive O2 dep headache and a sat of 87 *while wearing O2*, so this is an interesting puzzle to solve while hypoxic. (I'll be fine, it's coming up now, but god am I glad I have good practical pulmonology skillz.)
Who knew that being that geeky kid who begged every RT they saw to teach them all the maths and how to run all the equipment would pay off *many many* times over?
Well, I kinda did. Having lungs that don't like to lung was a motivating factor. Still, thanks, nerdy kid self!
I did not, however, anticipate turning into some sort of SuperCripPulmoGeek hybrid, as seemed to happen somewhere along the line. I'm sitting here thinking "87's not good, but there was that time when *three* of you were turning blue on the back deck and everybody lived, so..."
That's one of many stories that's too long for Twitter, but it starts "I was feeling sorry for myself at 2 am" and ends "and that's how we found out the MN cops were looking for us" and there's a picc line dressing change in a moving car and... as I said, too long for Twitter.
Anyway, I've navel-gazed my way back up to 96, so time to try that bed thing again.
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Wow. That's an interesting first... someone thought they'd pick a fight with me, I replied, they realized that the argument they *thought* I was making was not the argument I made, and were so - embarrassed, I assume? That they blocked *me*. Ah, Twitter, you're a riot.
Oh god, I just figured out what happened... this particular dude was a "you're American, you're not allowed to *speak* about Ireland, and you can't *possibly* know anything, you plastic paddy" dude. Just in case anyone was curious. They're a goddamned delight, I can tell you.
(If you've known me longer than *five seconds* you will know that I am very, very careful what I say about NI/RoI and that's for good reason - I am not Northern Irish or Irish, I am American. I *should* be careful! But *these* dudes... they don't believe I exist. I am fictional.)
Dear Google Maps: Northern Ireland is not "Ireland" and Ukraine is not "Russia." For further information, please consult any atlas produced after approx. 1991.
To be fair, this is as a result of me digging into the new global covid data layer in Maps and going "?!" every time I see that the US institution who complied the data failed geography class *and* history class. I hope their science knowledge is a bit more on point!
*Compiled.
And obviously the fact that NI is not RoI goes back further than 1991 - that was in reference to Ukraine. I can't get into a date war about The Irish Free State et al right now; clearly too hypoxic to catch my own damn typos atm.
I want to talk about #LongCovid & #hypoxia & how my experience of it now is *drastically*, even *dangerously* different to what prior lung issues taught me.
I didn't plan to do this thread and I'm not thinking clearly atm, but it's important, so I'm going to give it a go.
Background: I was born prematurely & before synthetic surfactant, so I have asthma and temperamental lungs in general. I also have an extensive history of pneumonias that try to kill me (as in ICU stays). So I've had 40 years of knowing how to handle not being able to breathe.
I knew about happy hypoxia. I knew how, when, and what to do about it when my judgment about whether I was alright started to slip, and I knew that that's often the first thing to go when you're hypoxic - *first*, you feel... off. Unquantifiably off. It's easy to miss it.
Person: Hey Meg, where can I find your writing?
Me: Erm... I yanked most of my writing off the net years ago, sorry.
Them: Why would you do that?!
Me: Because of nonsense like this. 👇
I don't have the energy to build out my own site right now, and I refuse to have my work hosted by a site that's constantly badgering me to sell myself harder for *their* profit. There's a word for what that is... starts with a p, ends with a p, there's an i and an m in there...
That's not to say I look down on any disabled person who tries their hand at these platforms. I get it. I've considered it many many times, & may yet change my mind. But what's stopping me is knowing they *will* badger me, & then *they* will profit from my work more than I will.
It continues to amuse me every time someone tries to snark "thanks for noticing, welcome to disability" at me because, uh... I was born disabled and I had ME by 1994, so everyone who assumes LC is my first rodeo in *any* respect is demonstrating they don't believe I can exist.
If when I say "Thanks, but I've been disabled all my life," your response is "Oh yeah, well not like *I* have!" I hear, "Oh yeah, well I'm so new to being part of the disabled community that I can't conceive anyone would have to live their whole lives like this."
One of the lousy parts of pandemic living is watching how many disabled people *really* need to do some work on their own ableism and have *zero* self-awareness of that. None of us are the only disabled person on the planet, & your experience is not the only disabled experience.
Me, criplit author, to one of my writing pals: If I were writing out my own course of #LongCovid with the aim of sketching out a fictional character, I would 100% scratch it out as not plausible. "Tone down. This is verging on ludicrous. Pull back on the crises."
On a serious note, I think that is a factor in why it's so difficult to get doctors to believe us. Disbelieving patients is a feature of medicine, don't get me wrong, but as a medical geek, no other illness has caused me to keep checking the *instruments* due to wild readings.
When you grow up with doc's offices and hospitals a regular feature of your life, you learn early on that wild readings happen and not to freak out about a blip, but when *everything* looks like a blip but the equipment isn't faulty, are we measuring useful things anymore?