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.
Except #LongCovid hypoxia was a whole other world of "I'm not short of breath, I don't feel dizzy, my self-assessment is sound - but the probe says things are not okay." And for months I didn't know what to *do* with that, because O2 when you *don't* need it can be detrimental.
So I kept checking and trying to be cautious - don't stand up during a low, don't move much when it's bouncing all over, etc (again, I'm not new to this), but the fatigue and cognitive dysfunction were *unreal*. It didn't feel like hypoxia-related cognitive dysfunction, though.
It also didn't feel like ME related cognitive dysfunction - instead, I felt like I was losing my mind. I'd lose giant blocks of time (hours!) where I was conscious and interacting (and comfortable, ish!) and had *no* memory of what I'd done. My speech went *completely* to hell.
(Intermission: The speech issue is complicated by having CP. The "cerebral palsy speech" you may be thinking of when you hear "CP?" I don't normally have that - not so *you'd* notice. Boy howdy do I have it now! Anyone need an authentic sounding drunk dial? At your service!😁)
Believe it or not, I didn't even notice when my speech started to slip, even though I felt it happening (it's like not being able to trust a dance partner - "wtf are you *doing*, mouth muscles, that's not the signal I sent! You gotta keep the lips and tongue in the game, man!")
But the slow *motor* response re: speech - a quirk I have thanks to CP and *not* asthma or covid - is what finally tipped me off to the fact that I *had* to be more hypoxic than I thought I was. I don't know how (formerly) abled people can make that determination.
The more I thought about it, the more I realized that "my brain is not getting enough oxygen" explained the hallucinations, the *mental* word retrieval issues (different to speech issues!), the crushing fatigue, & the headache that did not always *feel* like an O2 dep headache.
But I couldn't find a reading that was low enough for *long* enough that I was comfortable dragging the 02 out of the closet (again, O2 when you *don't* need it can be as detrimental as *not* having it when you do need it.) Until I started lying flat and checking after 15 min.
And... yeah, wow, turns out spending my entire night in the low 80s/high 70s, while I'm unconscious and thus can't sort it, has been part of the problem! And it *terrifies* me how many people with #LongCovid don't realize this could be happening to them.
In "normal times," they tell people w/ a history of lung issues to hit A&E/ER when sat drops below *94*. For #LongCovid, I've been told not to darken anyone's door til it's 85 or lower for more than 10 minutes. We're using a *wildly* different metric for hypoxia than ever before.
But do our brains know that? I'm serious - is *enforced* extended hypoxia what's *causing* some of the neuro symptoms we see in #LongCovid? I don't know and I'm not going to speculate (I am way, way too #hypoxic to medgeek on that level atm) but it wouldn't *surprise* me.
That brings me to early this am, when I had a major hypoxic incident *while wearing O2* - I'm still not sure why, but repositioning fixed it eventually. However, I woke up this morning feeling groggy, short of breath, and with a *massive* O2 dep headache. (The thud is... unique.)
I haven't been having many of those - usually they're more what I think of as a *covid* headache, where it feels like all the flesh has been peeled off your skull and someone's jabbing your brain with a hot needle. Similar in terms of discomfort level, yet very different in feel.
And now, lately, it's *both* (fun times!) which is also a bit concerning, because it means something's shifted. So I've been wary the past few days. Less moving. Less forcing myself to do that (f***ing) talking business (if I ever catch who invented verbal speech, I swear...).
This am, it seems to have caught up with me anyway. Normally, I can (& do) have the O2 off from about 2 hours after I wake up till about 2 hours before I go to bed. Today? I *very* nearly passed out trying to get Malarkey's meds and fluids done. 20 minutes off = sat of 86.
And only now - *now*, when it's *bad* - does it "feel like" hypoxia that I recognize *as hypoxia*. *Now* it's familiar. *Now* I feel like I'm on solid ground again (ironically). But things had to get demonstrably *worse* before I realized how bad they were to begin with.
I'll be okay. Pulmo stuff is where I *live* - in a very-slightly-fairer life I'd've spent about 20 years already working as a pulmonologist treating people with CF by now. Didn't happen, but my crip MacGuyver skills are still disproportionately respiratorily related.
I am also keenly aware that at any moment I could *not* be okay. I'm not anticipating it any time soon, but I'm aware it could happen (as it did this morning). It's hard to summarize 40 years of pulmo knowledge beyond "I do know what I'm doing, including not to get cocky."
But I worry, because I *do* love this stuff and study it for fun and have *decades* of experience with my body and others, and this is *still* one of the most confusing aspects of #LongCovid to me.... and I *do* know what I'm doing. I *have* trained under actual pulmonologists.
So if you have #LongCovid, *keep using the pulseox probe*. Check for #hypoxia. Check a *lot*. Check in different positions. Get a wearable that checks overnight. Check when you're not short of breath. Just check. Maybe it's fine. I hope so! But check anyway. Check often. Please.

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More from @seanchaibeag

Feb 18
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.)
Read 8 tweets
Feb 18
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.
Read 10 tweets
Feb 16
#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.
Read 8 tweets
Feb 16
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.
Read 4 tweets
Feb 15
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.
Read 4 tweets
Feb 3
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?
Read 5 tweets

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