When stuck in a fog, sometimes the only option is to stand still.
September 12, 2022 7:17 PM Subscribe
One of Long COVID’s Worst Symptoms Is Also Its Most Misunderstood “The stigma that long-haulers experience also motivates them to present as normal in social situations or doctor appointments, which compounds the mistaken sense that they’re less impaired than they claim—and can be debilitatingly draining. “They’ll do what is asked of them when you’re testing them, and your results will say they were normal,” David Putrino, who leads a long-COVID rehabilitation clinic at Mount Sinai, told me. “It’s only if you check in on them two days later that you’ll see you’ve wrecked them for a week.””
“Some people spontaneously recover back to baseline,” Hellmuth told me, “but two and a half years on, a lot of patients I see are no better.” And between these extremes lies perhaps the largest group of long-haulers—those whose brain fog has improved but not vanished, and who can “maintain a relatively normal life, but only after making serious accommodations,” Putrino said. Long recovery periods and a slew of lifehacks make regular living possible, but more slowly and at higher cost.
“Some people spontaneously recover back to baseline,” Hellmuth told me, “but two and a half years on, a lot of patients I see are no better.” And between these extremes lies perhaps the largest group of long-haulers—those whose brain fog has improved but not vanished, and who can “maintain a relatively normal life, but only after making serious accommodations,” Putrino said. Long recovery periods and a slew of lifehacks make regular living possible, but more slowly and at higher cost.
Yep, this is the thing that scares me. Thank you sincerely, OP; I needed to read that.
posted by humbug at 8:18 PM on September 12, 2022 [8 favorites]
posted by humbug at 8:18 PM on September 12, 2022 [8 favorites]
but 99% survival rate /s
posted by meowzilla at 8:19 PM on September 12, 2022 [13 favorites]
posted by meowzilla at 8:19 PM on September 12, 2022 [13 favorites]
I'm going through this and it's hell. I feel like I'm half as smart or less than before the pandemic.
I'm exhausted all the time. My whole body hurts most of the time. I'm tired of explaining to people why I'm tired all the time. I've been having to jump through hoops to eliminate other things even though I already know it's none of those things. Exercise doesn't help, it makes it worse. Trying to think my way out of it makes it worse. Doing yoga or meditating makes it worse. Not even eating better seems to help. I don't even know what to do or what the solution could even be.
I miss being able to be even partially functional. I miss working and using my brain. I miss being able to be social and hold a conversation without feeling like I'm wading through thick syrup.
posted by loquacious at 8:31 PM on September 12, 2022 [139 favorites]
I'm exhausted all the time. My whole body hurts most of the time. I'm tired of explaining to people why I'm tired all the time. I've been having to jump through hoops to eliminate other things even though I already know it's none of those things. Exercise doesn't help, it makes it worse. Trying to think my way out of it makes it worse. Doing yoga or meditating makes it worse. Not even eating better seems to help. I don't even know what to do or what the solution could even be.
I miss being able to be even partially functional. I miss working and using my brain. I miss being able to be social and hold a conversation without feeling like I'm wading through thick syrup.
posted by loquacious at 8:31 PM on September 12, 2022 [139 favorites]
This essay was illuminating for me:
https://open-book.ca/Columnists/Brain-Fog-An-Essay
posted by PistachioRoux at 8:41 PM on September 12, 2022 [13 favorites]
https://open-book.ca/Columnists/Brain-Fog-An-Essay
posted by PistachioRoux at 8:41 PM on September 12, 2022 [13 favorites]
loquacious, that sounds horrible. It won't help you at all since it's not even real but here's a hug.
posted by ashbury at 8:42 PM on September 12, 2022 [15 favorites]
posted by ashbury at 8:42 PM on September 12, 2022 [15 favorites]
I'm so scared of this. I don't get how people can just run around free faced all the time, not being afraid of this happening to them.
I note that I made a friend during the pandemic online who then broke it off, specifically because of the brain fog. I hope she's doing okay but suspect she's not, since she was losing her ability to do her job.
I'm so sorry, loquacious and everyone else with it.
posted by jenfullmoon at 8:44 PM on September 12, 2022 [13 favorites]
I note that I made a friend during the pandemic online who then broke it off, specifically because of the brain fog. I hope she's doing okay but suspect she's not, since she was losing her ability to do her job.
I'm so sorry, loquacious and everyone else with it.
posted by jenfullmoon at 8:44 PM on September 12, 2022 [13 favorites]
I miss being able to be even partially functional. I miss working and using my brain. I miss being able to be social and hold a conversation without feeling like I'm wading through thick syrup.
I had Covid earlier this year for about a week but I’m also in menopause and also sort of forgot how to talk to people during lockdown. I have never-ending brain fog and I totally feel half-as-smart.
Brain fog is so frustrating, I can’t remember words, conversations, people’s names, or what I’m doing moment-to-moment. I’ll read MeFi threads/Slack threads/text threads and start a comment in my head but most of the time can’t muster the focus to post it.
posted by bendy at 8:46 PM on September 12, 2022 [40 favorites]
I had Covid earlier this year for about a week but I’m also in menopause and also sort of forgot how to talk to people during lockdown. I have never-ending brain fog and I totally feel half-as-smart.
Brain fog is so frustrating, I can’t remember words, conversations, people’s names, or what I’m doing moment-to-moment. I’ll read MeFi threads/Slack threads/text threads and start a comment in my head but most of the time can’t muster the focus to post it.
posted by bendy at 8:46 PM on September 12, 2022 [40 favorites]
I feel like I should mention that the only reason I made the effort to make that comment was because it’s so true.
posted by bendy at 8:48 PM on September 12, 2022 [16 favorites]
posted by bendy at 8:48 PM on September 12, 2022 [16 favorites]
PistachioRoux that essay is a perfect description. Adderall was supposed to fix this and it did for awhile.
posted by bendy at 8:52 PM on September 12, 2022 [2 favorites]
posted by bendy at 8:52 PM on September 12, 2022 [2 favorites]
I have had recurrent brain fog from celiac whenever I get glutened for over a decade, so it's not unfamiliar to me. But as horrible as the neurological symptoms are when I ingest a tiny bit of gluten, at this point I at least know how long that particular narrative arc will last. A week, maybe two. Not more.
Having brain fog for a week after I got COVID was terrifying. "How long will this last? A week? A month? A year? Permanently?"
After taking a week off for the infectious phase of COVID, I went back into work the next Monday. All day, I felt like my brain was a tube of toothpaste with no toothpaste in it that I was laboriously trying to squeeze toothpaste out of. I felt mentally clumsy, confused, like I was swimming through Jell-O. I went home that night and (with the encouragement of a friend, I was having a lot of trouble making my own decisions) took the rest of the week off work (grateful that I was able to do this) to rest and sleep.
That seems to be the only thing in the literature that reduces the chance of long COVID -- total, boring, mindnumbing rest and sleep if you still feel bad. Not exercising, not pushing through it. But it's not 100% reliable, and so many people don't have the opportunity to just do nothing for a week, or a month, or longer.
I felt guilty for staying home for four whole days when I was "fine" (fine except for the thick brain fog when performing any remotely intellectual task). I felt this guilt despite encouraging friends in similar situations to stay home and rest.
I feel significantly better now, and I'm so glad I had the chance to rest, and the community support and encouragement to do so.
posted by cnidaria at 9:12 PM on September 12, 2022 [36 favorites]
Having brain fog for a week after I got COVID was terrifying. "How long will this last? A week? A month? A year? Permanently?"
After taking a week off for the infectious phase of COVID, I went back into work the next Monday. All day, I felt like my brain was a tube of toothpaste with no toothpaste in it that I was laboriously trying to squeeze toothpaste out of. I felt mentally clumsy, confused, like I was swimming through Jell-O. I went home that night and (with the encouragement of a friend, I was having a lot of trouble making my own decisions) took the rest of the week off work (grateful that I was able to do this) to rest and sleep.
That seems to be the only thing in the literature that reduces the chance of long COVID -- total, boring, mindnumbing rest and sleep if you still feel bad. Not exercising, not pushing through it. But it's not 100% reliable, and so many people don't have the opportunity to just do nothing for a week, or a month, or longer.
I felt guilty for staying home for four whole days when I was "fine" (fine except for the thick brain fog when performing any remotely intellectual task). I felt this guilt despite encouraging friends in similar situations to stay home and rest.
I feel significantly better now, and I'm so glad I had the chance to rest, and the community support and encouragement to do so.
posted by cnidaria at 9:12 PM on September 12, 2022 [36 favorites]
I'll keep hiding at home till this thing actually *is* endemic, thank you.
“Endemic” doesn’t mean “not bad.”
posted by atoxyl at 9:13 PM on September 12, 2022 [29 favorites]
“Endemic” doesn’t mean “not bad.”
posted by atoxyl at 9:13 PM on September 12, 2022 [29 favorites]
It sounds very much like the way people describe ME/CFS. Which might be a post-viral thing too.
Subjectively, for me, the first few weeks after COVID was a lot like the time after I caught Glandular Fever (aka Epstein-Barr, aka mononucleosis).
I think I'm mostly okay now, but I've had a few more "nope" days than usual lately.
posted by nickzoic at 9:18 PM on September 12, 2022 [12 favorites]
Subjectively, for me, the first few weeks after COVID was a lot like the time after I caught Glandular Fever (aka Epstein-Barr, aka mononucleosis).
I think I'm mostly okay now, but I've had a few more "nope" days than usual lately.
posted by nickzoic at 9:18 PM on September 12, 2022 [12 favorites]
I'm really sorry this is happening. I'm sorry we couldn't stop it before it got to you. I wish we could protect everyone from this. I will never stop trying.
posted by bleep at 9:42 PM on September 12, 2022 [20 favorites]
posted by bleep at 9:42 PM on September 12, 2022 [20 favorites]
This is painfully real:
And she rarely talks about these problems openly because “in my field, your brain is your currency,” she said. “I know my value in many people’s eyes will be diminished by knowing that I have these cognitive challenges.”
posted by lookoutbelow at 9:54 PM on September 12, 2022 [37 favorites]
And she rarely talks about these problems openly because “in my field, your brain is your currency,” she said. “I know my value in many people’s eyes will be diminished by knowing that I have these cognitive challenges.”
posted by lookoutbelow at 9:54 PM on September 12, 2022 [37 favorites]
The long term health consequences of Covid for some percentage of survivors were always going to be the real cost of this pandemic. We know post-viral conditions exist and can be seriously disabling. This is not news.
The real story about it is why did medicine and broader society not see that coming.
Still masking up when I go out, and generally have a low social contact lifestyle, so it is relatively easy to do. But very much in the minority here. Only about 1 in 50 are wearing them in public spaces (beside medical clinics, aged care homes, etc).
Have not had any hassles about it, yet. Maybe because I am getting on, and showing it, and there might be some leeway still being granted for older people, who do seem to make up the majority of those using masks.
posted by Pouteria at 9:56 PM on September 12, 2022 [15 favorites]
The real story about it is why did medicine and broader society not see that coming.
Still masking up when I go out, and generally have a low social contact lifestyle, so it is relatively easy to do. But very much in the minority here. Only about 1 in 50 are wearing them in public spaces (beside medical clinics, aged care homes, etc).
Have not had any hassles about it, yet. Maybe because I am getting on, and showing it, and there might be some leeway still being granted for older people, who do seem to make up the majority of those using masks.
posted by Pouteria at 9:56 PM on September 12, 2022 [15 favorites]
I mean, I stopped trying after a while, because at some point the % chance of things going seriously wrong became less than the % of my (and my kids') life we were going to spend sitting on our arses waiting for life to happen again.
But ... all that lockdown shit held it off for long enough for us[*] to get multiple mRNA vaccinations[**] so it was worth it.
[*] also a lot of other people, but I'm embracing the subjective here.
[**] my last one 2 days after infection, unknowingly, NOT RECOMMENDED.
posted by nickzoic at 9:59 PM on September 12, 2022 [4 favorites]
But ... all that lockdown shit held it off for long enough for us[*] to get multiple mRNA vaccinations[**] so it was worth it.
[*] also a lot of other people, but I'm embracing the subjective here.
[**] my last one 2 days after infection, unknowingly, NOT RECOMMENDED.
posted by nickzoic at 9:59 PM on September 12, 2022 [4 favorites]
This has been on my to-read tab, but heh, not enough focus today. (I skimmed the author's thread on Twitter.)
I have ME/CFS from mono in high school, and the brain fog is one of the most frustrating things. I describe it as "swiss cheese brain" because sometimes there's just holes. I can remember a conversation word for word, but will entirely forget to move the laundry to the drier unless I set an alarm.
I used to be in honors algebra in high school and sailed through college math courses pretty easily. Now, basic math makes me want to cry. I still do it all the time, so I'm not "rusty." I handle the house finances, I sew (!!), I work on all the home reno projects. All of that is math. And I have to constantly use a calculator.
I struggle to read because I drift off and realize I didn't comprehend anything I read. I stumble over words and forget words all the time. And when I get migraines, I get aphasia and can't even form thoughts.
None of this was a problem before I got sick. It has deeply impacted my life and is a huge reason I can no longer work. Because if I use my brain too much, it turns to mush.
It's terrible to feel locked in by your brain. The ideas are there. The words are there. But you just can't grasp them. And other times you get that little glimpse into the person you used to be and what you could be capable of...if only...
Anyway, disabled people told you. We have been screaming about this since day 1. It's so important to do everything you can to stop this pandemic and protect yourself and others.
posted by Crystalinne at 10:04 PM on September 12, 2022 [53 favorites]
I have ME/CFS from mono in high school, and the brain fog is one of the most frustrating things. I describe it as "swiss cheese brain" because sometimes there's just holes. I can remember a conversation word for word, but will entirely forget to move the laundry to the drier unless I set an alarm.
I used to be in honors algebra in high school and sailed through college math courses pretty easily. Now, basic math makes me want to cry. I still do it all the time, so I'm not "rusty." I handle the house finances, I sew (!!), I work on all the home reno projects. All of that is math. And I have to constantly use a calculator.
I struggle to read because I drift off and realize I didn't comprehend anything I read. I stumble over words and forget words all the time. And when I get migraines, I get aphasia and can't even form thoughts.
None of this was a problem before I got sick. It has deeply impacted my life and is a huge reason I can no longer work. Because if I use my brain too much, it turns to mush.
It's terrible to feel locked in by your brain. The ideas are there. The words are there. But you just can't grasp them. And other times you get that little glimpse into the person you used to be and what you could be capable of...if only...
Anyway, disabled people told you. We have been screaming about this since day 1. It's so important to do everything you can to stop this pandemic and protect yourself and others.
posted by Crystalinne at 10:04 PM on September 12, 2022 [53 favorites]
Well, it seems that some increased number of medical professionals might perhaps have possibly started to view cognitive dysfunction as a legitimate condition worth treating in its own right, and not just an effect of such things as "stress," "depression," "laziness," or "health anxiety." That's so nice. Took nothing more than a pandemic afflicting several of their own with the same symptoms.
posted by cinchona at 10:17 PM on September 12, 2022 [24 favorites]
posted by cinchona at 10:17 PM on September 12, 2022 [24 favorites]
I'll keep hiding at home till this thing actually *is* endemic, thank you.Yeah, the troubling part is that "endemic" means "here to stay, permanently," not "no longer a threat.
“Endemic” doesn’t mean “not bad.”
posted by atoxyl
Arguably, covid is now endemic, and that's the problem 🙃
posted by DoctorFedora at 10:38 PM on September 12, 2022 [17 favorites]
I am very long term disabled with significant brain fog, and I have been heartbroken for two and a half years thinking about all the people who will join me in this bizarre land. The description of the woman’s brain being sparkling before and feeling that loss, oh oh oh that hit home like … something very hard hitting home. It still comes in fizzes sometimes and I feel magnificent and competent and I try not to think about when it goes again,
But I’ve also found a profound gentleness that I didn’t know was in me. As though once I came through to acceptance everything became this soft focus vaseline covered lens that I both see myself and others through. I’m kind because it takes too much brain power to be witty and cruel. Maybe not the best reason to become kind, but I don’t have the mental fortitude for moralizing about it.
posted by Bottlecap at 10:50 PM on September 12, 2022 [74 favorites]
But I’ve also found a profound gentleness that I didn’t know was in me. As though once I came through to acceptance everything became this soft focus vaseline covered lens that I both see myself and others through. I’m kind because it takes too much brain power to be witty and cruel. Maybe not the best reason to become kind, but I don’t have the mental fortitude for moralizing about it.
posted by Bottlecap at 10:50 PM on September 12, 2022 [74 favorites]
Do we remaining maskers continue on until Covid burns itself out, or at least become much more benign? Or an effective transmission blocking vaccine becomes available? Or...?
Not clear to me what the end game is here. Very much a holding pattern for me at the moment, just waiting to see what happens next.
I absolutely can't afford more serious health troubles, but also not keen to be wearing a mask for my remaining days.
posted by Pouteria at 11:28 PM on September 12, 2022 [5 favorites]
Not clear to me what the end game is here. Very much a holding pattern for me at the moment, just waiting to see what happens next.
I absolutely can't afford more serious health troubles, but also not keen to be wearing a mask for my remaining days.
posted by Pouteria at 11:28 PM on September 12, 2022 [5 favorites]
I’ve invested in non-disposable high quality masks and will be masking until there is a significant scientific breakthrough. I would feel differently if I lived somewhere with decent medical leave where people stayed home when sick and wore a source control mask if they were feeling a bit off. But since I live in the land of denial, I’ve made my peace and spent the $40 to have a couple good p100 masks in rotation.
Interestingly, over the last two weeks I’ve had more people stop in public to ask me questions about their comfort and effectiveness than at any previous point. Including a few people not wearing a mask, but who were feeling like it was time to look for something comfortable for every day wear. I’m not entirely sure what’s shifted for people, but it makes me glad to be able to advocate for a more cost effective and safer option.
I don’t see a point where I take off my mask until science actually catches up with “here’s how we keep you from developing clots and inflammation.” Which I think is more likely now that at any point during the decades of my disability.
The people who want to see my face can test and isolate or see me over a screen. Otherwise, I’ll be delighted to see them masked and outdoors.
posted by Bottlecap at 1:22 AM on September 13, 2022 [20 favorites]
Interestingly, over the last two weeks I’ve had more people stop in public to ask me questions about their comfort and effectiveness than at any previous point. Including a few people not wearing a mask, but who were feeling like it was time to look for something comfortable for every day wear. I’m not entirely sure what’s shifted for people, but it makes me glad to be able to advocate for a more cost effective and safer option.
I don’t see a point where I take off my mask until science actually catches up with “here’s how we keep you from developing clots and inflammation.” Which I think is more likely now that at any point during the decades of my disability.
The people who want to see my face can test and isolate or see me over a screen. Otherwise, I’ll be delighted to see them masked and outdoors.
posted by Bottlecap at 1:22 AM on September 13, 2022 [20 favorites]
Bottlecap, I'll ask too - what masks are you using?
posted by trig at 3:07 AM on September 13, 2022 [9 favorites]
posted by trig at 3:07 AM on September 13, 2022 [9 favorites]
Getting my Omicron specific booster today; I'm almost sixty and work in tech, I struggle to keep up now, brain fog would probably force me to retire.
posted by octothorpe at 3:29 AM on September 13, 2022 [7 favorites]
posted by octothorpe at 3:29 AM on September 13, 2022 [7 favorites]
"That seems to be the only thing in the literature that reduces the chance of long COVID -- total, boring, mindnumbing rest and sleep if you still feel bad." - cnidaria
Interesting, can you point us to those studies? If that's the only thing that works, learning more about it could be really helpful.
posted by Tehhund at 3:45 AM on September 13, 2022 [2 favorites]
Interesting, can you point us to those studies? If that's the only thing that works, learning more about it could be really helpful.
posted by Tehhund at 3:45 AM on September 13, 2022 [2 favorites]
I think I have something like this? I've been dig tired and not thinking straight for months now, since around the time I had a bad concussion and then covid. It sucks. I also have absolutely been doing the thing of trying to minimise or hide it, mostly subconsciously.
posted by Dysk at 3:58 AM on September 13, 2022 [9 favorites]
posted by Dysk at 3:58 AM on September 13, 2022 [9 favorites]
“Endemic” doesn’t mean “not bad.”
... the troubling part is that "endemic" means "here to stay, permanently,"
It doesn't mean either of those things. It means that other than seasonal cycles (like the flu), there is no appreciable change in cases over time. Covid was "here to stay" from the very start (although not everyone knew that). But it was not endemic as novel cases washed around the globe the first time (or the second time).
The salient part about staying home/masked/cautious as Flight Hardware, do not touch implies is that once it is truly endemic (it fucking is not), there is no specific benefit to waiting longer until you relax your defenses, because it will not be better next year.
Covid is here to stay for sure but it has not settled down in its dynamics. That is what endemic really means, that infection rates reach something akin to a stable cycle, if not an outright steady state. That could take a good long while still, especially if it keeps changing at such relatively unprecedented rates. Endemism is not something a goddam airline or govt gets to declare. That's exactly like Michael Scott declaring bankruptcy.
Anyway, as someone who has studied disease ecology and infectious disease dynamics at the graduate level and uses their brain professionally to figure out new things about population dynamics, count this spider as another one staying the fuck home.
For me, the best possible end game will be when it is more like the flu. Newly formulated shots each year, delivered seasonally to as many people as we can, continues to kill lots of people every year but we don't talk about it much because it's a small enough inconvenience for most of us. And like most sensible people in Asia have been doing for a while, wearing masks on public transport or mixing in large crowds, especially during local peak disease season.
Thanks Bottlecap for the great post, this is really important to keep spreading awareness of.
posted by SaltySalticid at 5:09 AM on September 13, 2022 [56 favorites]
... the troubling part is that "endemic" means "here to stay, permanently,"
It doesn't mean either of those things. It means that other than seasonal cycles (like the flu), there is no appreciable change in cases over time. Covid was "here to stay" from the very start (although not everyone knew that). But it was not endemic as novel cases washed around the globe the first time (or the second time).
The salient part about staying home/masked/cautious as Flight Hardware, do not touch implies is that once it is truly endemic (it fucking is not), there is no specific benefit to waiting longer until you relax your defenses, because it will not be better next year.
Covid is here to stay for sure but it has not settled down in its dynamics. That is what endemic really means, that infection rates reach something akin to a stable cycle, if not an outright steady state. That could take a good long while still, especially if it keeps changing at such relatively unprecedented rates. Endemism is not something a goddam airline or govt gets to declare. That's exactly like Michael Scott declaring bankruptcy.
Anyway, as someone who has studied disease ecology and infectious disease dynamics at the graduate level and uses their brain professionally to figure out new things about population dynamics, count this spider as another one staying the fuck home.
For me, the best possible end game will be when it is more like the flu. Newly formulated shots each year, delivered seasonally to as many people as we can, continues to kill lots of people every year but we don't talk about it much because it's a small enough inconvenience for most of us. And like most sensible people in Asia have been doing for a while, wearing masks on public transport or mixing in large crowds, especially during local peak disease season.
Thanks Bottlecap for the great post, this is really important to keep spreading awareness of.
posted by SaltySalticid at 5:09 AM on September 13, 2022 [56 favorites]
Ed Yong has been out there ringing the bell and doing great reporting about overlooked ramifications of the pandemic - looking into the long term disabling components of COVID, not just the metrics of cases, hospitalizations, and deaths.
And as a long covid/brain-foggy person, I appreciate it. Here for the solidarity with others in this thread and out of it.
I've noticed we talk in metaphors to explain how it affects us. Me - it usually feels like I just woke up. It feels like the TBI I had four or five years ago. My brain doesn't understand things quite as reflexively anymore: sometimes sounds and reflections confuse me, I can't figure out what they are, I can't place them. My memory of the past four or five months is a series of shards: I can recall a lot of things that happened, with effort, but they feel unmoored in time. It's hard to place them in space or, more frequently, time - they're disconnected from a timeline. I lose words.
It sucks.
posted by entropone at 5:27 AM on September 13, 2022 [22 favorites]
And as a long covid/brain-foggy person, I appreciate it. Here for the solidarity with others in this thread and out of it.
I've noticed we talk in metaphors to explain how it affects us. Me - it usually feels like I just woke up. It feels like the TBI I had four or five years ago. My brain doesn't understand things quite as reflexively anymore: sometimes sounds and reflections confuse me, I can't figure out what they are, I can't place them. My memory of the past four or five months is a series of shards: I can recall a lot of things that happened, with effort, but they feel unmoored in time. It's hard to place them in space or, more frequently, time - they're disconnected from a timeline. I lose words.
It sucks.
posted by entropone at 5:27 AM on September 13, 2022 [22 favorites]
I can’t remember words, conversations, people’s names, or what I’m doing moment-to-moment.
One problem is sorting out what might be long covid from the effects of aging. Tested positive pre-vaccine, mildish symptoms, a brief and slight drop in blood O2, but a lingering lack of appetite (plus the effects of not eating enough), and questions about cognitive functioning.
I've been scanning my food desires to find things that will appeal to me now, which aren't what my customary dishes were. Right now I'm getting ready to make blueberry tarts in a walnut crust, but I can't remember where I put the cupcake baking tray. It's easier to just go out and buy another one. Same thing with vegetable peelers, garlic presses etc. I'm going to end up with a lot of duplicate kitchenware.
I wish I had more diagnostics to assess cognitive functioning, maybe I'll start recording regular scoring for study book LSAT and GSAT sample tests. I've been told that a feature of cognitive decline can be complete unawareness of it occurring. Not "I lost my cupcake tray", but "Somebody moved my cupcake tray".
posted by StickyCarpet at 5:30 AM on September 13, 2022 [6 favorites]
One problem is sorting out what might be long covid from the effects of aging. Tested positive pre-vaccine, mildish symptoms, a brief and slight drop in blood O2, but a lingering lack of appetite (plus the effects of not eating enough), and questions about cognitive functioning.
I've been scanning my food desires to find things that will appeal to me now, which aren't what my customary dishes were. Right now I'm getting ready to make blueberry tarts in a walnut crust, but I can't remember where I put the cupcake baking tray. It's easier to just go out and buy another one. Same thing with vegetable peelers, garlic presses etc. I'm going to end up with a lot of duplicate kitchenware.
I wish I had more diagnostics to assess cognitive functioning, maybe I'll start recording regular scoring for study book LSAT and GSAT sample tests. I've been told that a feature of cognitive decline can be complete unawareness of it occurring. Not "I lost my cupcake tray", but "Somebody moved my cupcake tray".
posted by StickyCarpet at 5:30 AM on September 13, 2022 [6 favorites]
FWIW you can diligently mask and stay away from people and still get this motherfucker. I think I got it via my eyes. Since covid can infect conjunctiva (mucus membranes!), if you walk through a cloud of aerosols and it hits your eyes, you can totally get it that way. I had itchy-as-hell eyes for a week before I started getting a bit of a sore throat and etc etc etc and eventually tested positive. I probably got it during one of the five minutes I spent running through a store to get necessaries, heading through a cloud of poison exhaled by some asshole who thinks "it's over" or "i'm not sick."
Isn't that great?
I've mostly recovered from the fog but am still cautious of where I am willing to spend my spoons.
posted by seanmpuckett at 5:31 AM on September 13, 2022 [9 favorites]
Isn't that great?
I've mostly recovered from the fog but am still cautious of where I am willing to spend my spoons.
posted by seanmpuckett at 5:31 AM on September 13, 2022 [9 favorites]
As someone who has migraine with aura, I already deal with waves of brain fog that can last for hours or days. This has a significant negative impact on my quality of life and productivity every time it happens and I DO NOT WANT MORE OF IT, nor do I want it for other people.
What really scares me about COVID, that it seems to me the vast majority of the public either does not or chooses not to understand, is that EVERY instance of COVID infection carries a risk of developing long COVID symptoms. If you had it before and did not develop obvious long term complications, that does not mean that the next time you catch it you won't. A lot of people I personally know-- many of them educated, pro-science people-- seem to think that since they've had it once or twice and survived without terrible long term effects, it's surely not going to be so bad if they catch it again. And the data we have now shows that's just not true. Just because you dodged a bullet once doesn't mean you're bullet-proof.
If all of humanity just keeps catching this virus once or twice a year, even if only 5% of people develop serious long term symptoms each time (quite possibly a generous underestimate), if we can't figure out how to reverse the damage, in a few years, on the population level, we are going to be in very very serious trouble.
posted by BlueJae at 5:35 AM on September 13, 2022 [26 favorites]
What really scares me about COVID, that it seems to me the vast majority of the public either does not or chooses not to understand, is that EVERY instance of COVID infection carries a risk of developing long COVID symptoms. If you had it before and did not develop obvious long term complications, that does not mean that the next time you catch it you won't. A lot of people I personally know-- many of them educated, pro-science people-- seem to think that since they've had it once or twice and survived without terrible long term effects, it's surely not going to be so bad if they catch it again. And the data we have now shows that's just not true. Just because you dodged a bullet once doesn't mean you're bullet-proof.
If all of humanity just keeps catching this virus once or twice a year, even if only 5% of people develop serious long term symptoms each time (quite possibly a generous underestimate), if we can't figure out how to reverse the damage, in a few years, on the population level, we are going to be in very very serious trouble.
posted by BlueJae at 5:35 AM on September 13, 2022 [26 favorites]
> ...EVERY instance of COVID infection carries a risk of developing long COVID symptoms.
True. It's been my understanding that the later variants are less severe and also statistically less likely to cause long COVID. This study comparing Delta and Omicron seems to confirm the latter. I mention this not to downplay COVID, but to point out that it seems to be evolving to a less virulent disease, and that maybe this evolution will continue.
Of course with unprecedented numbers of people catching Omicron and later variants, this still results in significant and troubling numbers of long COVID sufferers.
We've gladly received the vaccines when available, and were fairly cautious about masking and avoiding unnecessary group situations. Then I stopped most masking this spring, and we did a bit of traveling and socializing in July... and I caught COVID, and passed it to my wife. We fortunately just had mild cases with no lasting effects. But it was a sobering reminder of how easily it can be transmitted.
Best wishes to the long COVID sufferers for a full recovery.
posted by Artful Codger at 6:51 AM on September 13, 2022 [3 favorites]
True. It's been my understanding that the later variants are less severe and also statistically less likely to cause long COVID. This study comparing Delta and Omicron seems to confirm the latter. I mention this not to downplay COVID, but to point out that it seems to be evolving to a less virulent disease, and that maybe this evolution will continue.
Of course with unprecedented numbers of people catching Omicron and later variants, this still results in significant and troubling numbers of long COVID sufferers.
We've gladly received the vaccines when available, and were fairly cautious about masking and avoiding unnecessary group situations. Then I stopped most masking this spring, and we did a bit of traveling and socializing in July... and I caught COVID, and passed it to my wife. We fortunately just had mild cases with no lasting effects. But it was a sobering reminder of how easily it can be transmitted.
Best wishes to the long COVID sufferers for a full recovery.
posted by Artful Codger at 6:51 AM on September 13, 2022 [3 favorites]
> Do we remaining maskers continue on until Covid burns itself out, or at least become much more benign? Or an effective transmission blocking vaccine becomes available? Or...?
Outdoor transmission is relatively rare. It's not non-existent, but it's relatively rare, and I'll take that to be good enough. So we keep masking until we get serious enough, as a society, about ventilation and other mitigation techniques that indoor transmission rates look similar to outdoor transmission rates. It can be done, if we care enough.
I can't find it now, but I saw some pictures from a theater that was designed and built in the wake of the 1918 pandemic which had fresh air vents underneath every seat. There's no reason we can't do more of that. More fresh air, more filtering, and add to that ultraviolet germicidal irradiation, by which we can sterilize air directly. There are plenty of tools that we're not using yet.
Vaccination is great, and it's important to end anti-vaxxer nonsense and get something much closer to a completely vaccinated society, but our efforts can't end with vaccination, absent some major breakthrough.
posted by vibratory manner of working at 6:54 AM on September 13, 2022 [23 favorites]
Outdoor transmission is relatively rare. It's not non-existent, but it's relatively rare, and I'll take that to be good enough. So we keep masking until we get serious enough, as a society, about ventilation and other mitigation techniques that indoor transmission rates look similar to outdoor transmission rates. It can be done, if we care enough.
I can't find it now, but I saw some pictures from a theater that was designed and built in the wake of the 1918 pandemic which had fresh air vents underneath every seat. There's no reason we can't do more of that. More fresh air, more filtering, and add to that ultraviolet germicidal irradiation, by which we can sterilize air directly. There are plenty of tools that we're not using yet.
Vaccination is great, and it's important to end anti-vaxxer nonsense and get something much closer to a completely vaccinated society, but our efforts can't end with vaccination, absent some major breakthrough.
posted by vibratory manner of working at 6:54 AM on September 13, 2022 [23 favorites]
I can't believe people are like yeah it's a brain disabling disease that's easy to catch but I can't just wear a new item of clothing FOREVER!! Folks there's so many new items of clothing I'd put on to protect my brain. No limit.
posted by bleep at 7:17 AM on September 13, 2022 [43 favorites]
posted by bleep at 7:17 AM on September 13, 2022 [43 favorites]
That seems to be the only thing in the literature that reduces the chance of long COVID -- total, boring, mindnumbing rest and sleep if you still feel bad. Not exercising, not pushing through it. But it's not 100% reliable, and so many people don't have the opportunity to just do nothing for a week, or a month, or longer.
I had a very mild case of covid, no worse symptoms than a mild cold, and it happened during a week when I had a lot of small-but-important work deadlines, so I just worked through it. I got lucky and didn't seem to get any long-term effects, but in hindsight that was totally the wrong decision and I should have simply said "sorry, I'm sick and will be offline all week, we'll sort things out later."
But there is so much social pressure to not do that, even in a job like mine where we accrue paid leave and there is support for taking it (which is not the case for millions of people).
posted by Dip Flash at 7:22 AM on September 13, 2022 [5 favorites]
I had a very mild case of covid, no worse symptoms than a mild cold, and it happened during a week when I had a lot of small-but-important work deadlines, so I just worked through it. I got lucky and didn't seem to get any long-term effects, but in hindsight that was totally the wrong decision and I should have simply said "sorry, I'm sick and will be offline all week, we'll sort things out later."
But there is so much social pressure to not do that, even in a job like mine where we accrue paid leave and there is support for taking it (which is not the case for millions of people).
posted by Dip Flash at 7:22 AM on September 13, 2022 [5 favorites]
I can't believe people are like yeah it's a brain disabling disease that's easy to catch but I can't just wear a new item of clothing FOREVER!! Folks there's so many new items of clothing I'd put on to protect my brain. No limit.
Well for me, I can either wear a mask and get a migraine which (definitely) fries my brain for an indefinite time, or not wear a mask and get covid, which (might) fry my brain for an indefinite time, so basically I just gave up on brain-having. The world said "no more brain for you."
posted by We put our faith in Blast Hardcheese at 7:27 AM on September 13, 2022 [10 favorites]
Well for me, I can either wear a mask and get a migraine which (definitely) fries my brain for an indefinite time, or not wear a mask and get covid, which (might) fry my brain for an indefinite time, so basically I just gave up on brain-having. The world said "no more brain for you."
posted by We put our faith in Blast Hardcheese at 7:27 AM on September 13, 2022 [10 favorites]
I already occasionally get brain fog and it's the fucking worst--but it's a part of my life and friends' lives to the extent that I genuinely forgot that most people don't experience that level of impaired cognition and don't know the phenomenon well enough to immediately recognize it. (The bit about masking because your wits are your trade is also glumly familiar.)
It's not COVID related for me but it's just... you know, part of life when I'm not functioning very well. I'm terrified of COVID in part because I'm terrible at resting and especially pushing against pressure--internal or external--to justify my existence with labor; maintaining the boundaries I would need to actually just rest and sleep through it will be incredibly hard, and it's just easier to avoid as much as I can than try to maintain that. At least I'm currently lucky enough to work with a supervisor who is equally familiar with brain fog and terrified of it's becoming a more frequent visitor, so that helps in the micro--but social environment and social support for risk minimizing behaviors like emphasizing outdoor gatherings and distancing where possible is hugely important for that stuff too.
posted by sciatrix at 7:27 AM on September 13, 2022 [10 favorites]
It's not COVID related for me but it's just... you know, part of life when I'm not functioning very well. I'm terrified of COVID in part because I'm terrible at resting and especially pushing against pressure--internal or external--to justify my existence with labor; maintaining the boundaries I would need to actually just rest and sleep through it will be incredibly hard, and it's just easier to avoid as much as I can than try to maintain that. At least I'm currently lucky enough to work with a supervisor who is equally familiar with brain fog and terrified of it's becoming a more frequent visitor, so that helps in the micro--but social environment and social support for risk minimizing behaviors like emphasizing outdoor gatherings and distancing where possible is hugely important for that stuff too.
posted by sciatrix at 7:27 AM on September 13, 2022 [10 favorites]
Folks there's so many new items of clothing I'd put on to protect my brain. No limit.
Do you wear a helmet every time you ride in a car?
I think it's very very important to develop a full understanding of the possible long-term consequences of COVID infection, their likelihood, and hopefully their treatments. But I have to admit I get exhausted by people's acting as if it were the only risk in life to guard against and as if the absolute level of risk weren't considering. I say this as someone who still masks in indoor public spaces and who has a good friend whose kidneys are currently functioning poorly shortly after a bout of COVID.
posted by praemunire at 7:40 AM on September 13, 2022 [20 favorites]
Do you wear a helmet every time you ride in a car?
I think it's very very important to develop a full understanding of the possible long-term consequences of COVID infection, their likelihood, and hopefully their treatments. But I have to admit I get exhausted by people's acting as if it were the only risk in life to guard against and as if the absolute level of risk weren't considering. I say this as someone who still masks in indoor public spaces and who has a good friend whose kidneys are currently functioning poorly shortly after a bout of COVID.
posted by praemunire at 7:40 AM on September 13, 2022 [20 favorites]
Oh good now we talk about how riding in a car isn't comparable to a contagious disease. Let's just assume we've all had this same conversation 100 times.
posted by bleep at 7:49 AM on September 13, 2022 [26 favorites]
posted by bleep at 7:49 AM on September 13, 2022 [26 favorites]
Do you wear a helmet every time you ride in a car?Yes, every car that requires a helmet to avoid injury that I ride in, i wear a helmet to ride in in.
But the kind of car that requires a helmet as a standard survivable piece of equipment is not my daily driver.
But I close the car doors, use my mirrors, use my indicators, wear a safety belt and put my phone away when I'm in a daily driver.
A good mask is like a seatbelt, will save you more from more harm, but not all from all harm.
Helmet comparisons are complete and utter disingenuous, dangerous, specious, and callous. I don't have all the fcking brain I used to and I will do everything to not lose more, assuming I actually survive a bout.
posted by tilde at 7:59 AM on September 13, 2022 [21 favorites]
Let's have a conversation instead that assumes that we are all practicing as much harm reduction as we individually can, given everyone's life constraints. Shall we?
posted by sciatrix at 8:03 AM on September 13, 2022 [18 favorites]
posted by sciatrix at 8:03 AM on September 13, 2022 [18 favorites]
(I want to yell HARM REDUCTION a lot these days because both the churning terror of infection and variation in both ability and desire to curtail risky behaviors in the absence of structural support creates a climate where black-and-white, guilty-or-innocent dichotomies rule. Meanwhile nuance dies and we burn in darkness.
So: give people as many tools to manage their risk levels as you can, acknowledge that their needs and acceptable risks are probably best judged by themselves, and try to create options for people to self select from. And then, as much as possible, focus efforts on collective rather than individual behaviors.)
posted by sciatrix at 8:10 AM on September 13, 2022 [11 favorites]
So: give people as many tools to manage their risk levels as you can, acknowledge that their needs and acceptable risks are probably best judged by themselves, and try to create options for people to self select from. And then, as much as possible, focus efforts on collective rather than individual behaviors.)
posted by sciatrix at 8:10 AM on September 13, 2022 [11 favorites]
acknowledge that their needs and acceptable risks are probably best judged by themselves
I love harm reduction & shit as much as the next person but this is a contagion. People can decide not to have safer sex for whatever reason & I get it but it doesn't effect me because I'm not out there having sex with them. We're talking about people feeling free to spread their diseased aerosols in public where people don't have a choice not to engage. It's not right.
posted by bleep at 8:16 AM on September 13, 2022 [20 favorites]
I love harm reduction & shit as much as the next person but this is a contagion. People can decide not to have safer sex for whatever reason & I get it but it doesn't effect me because I'm not out there having sex with them. We're talking about people feeling free to spread their diseased aerosols in public where people don't have a choice not to engage. It's not right.
posted by bleep at 8:16 AM on September 13, 2022 [20 favorites]
To the question about rest, this is from the end of the article (which contains links that I didn’t pull over):
Patients struggle to make peace with how much they’ve changed and the stigma associated with it, regardless of where they end up. Their desperation to return to normal can be dangerous, especially when combined with cultural norms around pressing on through challenges and post-exertional malaise—severe crashes in which all symptoms worsen after even minor physical or mental exertion. Many long-haulers try to push themselves back to work and instead “push themselves into a crash,” Robertson told me. When she tried to force her way to normalcy, she became mostly housebound for a year, needing full-time care. Even now, if she tries to concentrate in the middle of a bad day, “I end up with a physical reaction of exhaustion and pain, like I’ve run a marathon,” she said.
Post-exertional malaise is so common among long-haulers that “exercise as a treatment is inappropriate for people with long COVID,” Putrino said. Even brain-training games—which have questionable value but are often mentioned as potential treatments for brain fog—must be very carefully rationed because mental exertion is physical exertion. People with ME/CFS learned this lesson the hard way, and fought hard to get exercise therapy, once commonly prescribed for the condition, to be removed from official guidance in the U.S. and U.K. They’ve also learned the value of pacing—carefully sensing and managing their energy levels to avoid crashes.
posted by Bottlecap at 8:26 AM on September 13, 2022 [14 favorites]
Patients struggle to make peace with how much they’ve changed and the stigma associated with it, regardless of where they end up. Their desperation to return to normal can be dangerous, especially when combined with cultural norms around pressing on through challenges and post-exertional malaise—severe crashes in which all symptoms worsen after even minor physical or mental exertion. Many long-haulers try to push themselves back to work and instead “push themselves into a crash,” Robertson told me. When she tried to force her way to normalcy, she became mostly housebound for a year, needing full-time care. Even now, if she tries to concentrate in the middle of a bad day, “I end up with a physical reaction of exhaustion and pain, like I’ve run a marathon,” she said.
Post-exertional malaise is so common among long-haulers that “exercise as a treatment is inappropriate for people with long COVID,” Putrino said. Even brain-training games—which have questionable value but are often mentioned as potential treatments for brain fog—must be very carefully rationed because mental exertion is physical exertion. People with ME/CFS learned this lesson the hard way, and fought hard to get exercise therapy, once commonly prescribed for the condition, to be removed from official guidance in the U.S. and U.K. They’ve also learned the value of pacing—carefully sensing and managing their energy levels to avoid crashes.
posted by Bottlecap at 8:26 AM on September 13, 2022 [14 favorites]
I would also respectfully ask that people keep this conversation on track as an accessible thread for people who do have brain fog and who this article and thread are for. A conversation with lots of branches and heat is much more wearying to keep up with. If general covid discussion is needed, a nee thread would be great instead of piling it into this one.
posted by Bottlecap at 8:28 AM on September 13, 2022 [20 favorites]
posted by Bottlecap at 8:28 AM on September 13, 2022 [20 favorites]
"A high-functioning person with a decline in their abilities who falls within the normal range is told they don’t have a problem,”
This line stood out to me so very much. I've had Fibro for almost two decades and I can still remember how quick witted I was before then. Everyone, doctors, partners, coworkers, continues to say that I don't seem a lot slower, that my brain fog doesn't appear to be that bad. But they don't truly understand all the coping mechanisms I have in place to not lose thoughts. I take copious notes. I have everything on a calendar. I have reminders everywhere because I cannot trust my brain to remember shit. I used to be the problem solver, the solution queen, the one who connected the dots. I still do a lot of that, but it's not the result of near instant understanding of the situation. Instead I have to think about it. A lot. And to other people it looks like I'm thinking for a few minutes or so, but they don't understand how fast I was before.
posted by teleri025 at 8:28 AM on September 13, 2022 [52 favorites]
This line stood out to me so very much. I've had Fibro for almost two decades and I can still remember how quick witted I was before then. Everyone, doctors, partners, coworkers, continues to say that I don't seem a lot slower, that my brain fog doesn't appear to be that bad. But they don't truly understand all the coping mechanisms I have in place to not lose thoughts. I take copious notes. I have everything on a calendar. I have reminders everywhere because I cannot trust my brain to remember shit. I used to be the problem solver, the solution queen, the one who connected the dots. I still do a lot of that, but it's not the result of near instant understanding of the situation. Instead I have to think about it. A lot. And to other people it looks like I'm thinking for a few minutes or so, but they don't understand how fast I was before.
posted by teleri025 at 8:28 AM on September 13, 2022 [52 favorites]
Do we remaining maskers continue on until Covid burns itself out, or at least become much more benign? Or an effective transmission blocking vaccine becomes available? Or...?
I think I'll be masking (I probably do it about 90/95% of the time) for the rest of my life, unless some miracle happens/they can block transmission. I don't think there's any reasonable hope that you can go free face the rest of your life and not constantly catch it. Right now I am going to try not wearing one at the theater during shows since I just got my BA5 booster, but had that not come out I probably wouldn't have even tried that, and I know it's really stupid of me not to be wearing it. I just am also sick of being the only one on stage doing it, too :/
posted by jenfullmoon at 8:44 AM on September 13, 2022 [6 favorites]
I think I'll be masking (I probably do it about 90/95% of the time) for the rest of my life, unless some miracle happens/they can block transmission. I don't think there's any reasonable hope that you can go free face the rest of your life and not constantly catch it. Right now I am going to try not wearing one at the theater during shows since I just got my BA5 booster, but had that not come out I probably wouldn't have even tried that, and I know it's really stupid of me not to be wearing it. I just am also sick of being the only one on stage doing it, too :/
posted by jenfullmoon at 8:44 AM on September 13, 2022 [6 favorites]
It's weird how when people talk about the tragedy of young/pro athletes being diminished in their strength or speed after COVID that's considered ableist but not when people talk about the horrors of being... Regular-Type Smart, Just Like the Normals.
posted by We put our faith in Blast Hardcheese at 9:13 AM on September 13, 2022 [8 favorites]
posted by We put our faith in Blast Hardcheese at 9:13 AM on September 13, 2022 [8 favorites]
I feel like we (the larger we) haven't fully acknowledged the two major overlapping sets of post-covid harm: long covid, and the concomitant increase in severe outcomes (cardiovascular events, stroke, kidney failure, diabetes, myocarditis, etc) that are all quite increased in risk in at least the first year following covid and are their own distinct class of life-long harm, but are not fully recognized as actually caused by covid.
And this disease is only 3 years old. We have no idea what's in store in 5 or 30 years.
I strongly want to avoid either of those classes of sequelae. I will keep masking and avoiding for as long as it takes, frankly, the cumulative risk of lifelong harm just isn't worth any given event or meal or sense or sense normalcy, whatever that was.
By the way, I read a new preprint yesterday showing that there has been no change in prevalence of long covid for the omicron variant. Don't fall for wishful thinking.
posted by Dashy at 9:22 AM on September 13, 2022 [17 favorites]
And this disease is only 3 years old. We have no idea what's in store in 5 or 30 years.
I strongly want to avoid either of those classes of sequelae. I will keep masking and avoiding for as long as it takes, frankly, the cumulative risk of lifelong harm just isn't worth any given event or meal or sense or sense normalcy, whatever that was.
By the way, I read a new preprint yesterday showing that there has been no change in prevalence of long covid for the omicron variant. Don't fall for wishful thinking.
posted by Dashy at 9:22 AM on September 13, 2022 [17 favorites]
Damn, as someone with ADHD (combined type, but more on the inattentive side), I already have to use a bunch of the coping mechanisms teleri025 mentioned just to manage things that are considered easy/normal for neurotypical people. Getting long COVID would probably just leave me completely fucked and truly disabled.
One of my biggest fears around COVID right now, is the risk of getting long COVID but not having it ever be recognized as an official diagnosis (because, good luck getting PCR testing where I live, and home-tests are not exactly a super reliable diagnostic tool). I worry about becoming disabled but not being able to access medical treatment or long-term disability benefits should I become unable to work, because my government decided ages ago to essentially stop allowing the general public to access PCR testing.
Of course, having said that, I have mostly let my guard down. I still mask in crowded indoor settings (except on the weekend, when I went to an event that was much busier and more crowded than I expected only to realize I'd forgotten to bring masks for me and the rest of the family), but otherwise am just hoping to have having now received four doses of vaccine, I am relatively protected from the worst effects of COVID if I do end up contracting it (which unfortunately seems inevitable now that essentially all public health measures have been dropped -- including mandatory isolating for positive cases; it is now only "recommended" that you self-isolate if you test positive, which I'm sure many workplaces will take as meaning, "too fucking bad, come to work or you're fired"). I frankly don't really know how to proceed in the current phase of the pandemic, which is basically, "the wave we pretend isn't happening because we are officially pretending like we're no longer in a pandemic."
posted by asnider at 9:36 AM on September 13, 2022 [6 favorites]
One of my biggest fears around COVID right now, is the risk of getting long COVID but not having it ever be recognized as an official diagnosis (because, good luck getting PCR testing where I live, and home-tests are not exactly a super reliable diagnostic tool). I worry about becoming disabled but not being able to access medical treatment or long-term disability benefits should I become unable to work, because my government decided ages ago to essentially stop allowing the general public to access PCR testing.
Of course, having said that, I have mostly let my guard down. I still mask in crowded indoor settings (except on the weekend, when I went to an event that was much busier and more crowded than I expected only to realize I'd forgotten to bring masks for me and the rest of the family), but otherwise am just hoping to have having now received four doses of vaccine, I am relatively protected from the worst effects of COVID if I do end up contracting it (which unfortunately seems inevitable now that essentially all public health measures have been dropped -- including mandatory isolating for positive cases; it is now only "recommended" that you self-isolate if you test positive, which I'm sure many workplaces will take as meaning, "too fucking bad, come to work or you're fired"). I frankly don't really know how to proceed in the current phase of the pandemic, which is basically, "the wave we pretend isn't happening because we are officially pretending like we're no longer in a pandemic."
posted by asnider at 9:36 AM on September 13, 2022 [6 favorites]
And now, actually RTFA, I see that the first person whose experiences they describe also has ADHD and says it is much worse. Executive dysfunction on top of already have executive dysfunction! Sounds horrible! I guess I should maybe start masking more regularly again.
posted by asnider at 9:42 AM on September 13, 2022 [5 favorites]
posted by asnider at 9:42 AM on September 13, 2022 [5 favorites]
I just got my bivalent booster (being a healthcare worker does have a few perks) and must confess I have gotten slack with masking outside of work. I appreciate the posting of this article because this reminds me why I must be more careful when mingling in social settings. It's not about dealing with COVID in the short term that I worry about, but the long term. I have been relatively lucky in my life with my health and I'd like continue that streak for as long as possible!
posted by Kitteh at 10:48 AM on September 13, 2022 [6 favorites]
posted by Kitteh at 10:48 AM on September 13, 2022 [6 favorites]
Thank you so much for finding and posting this article and also for all the comments from fellow sufferers. There is so much I recognize.
I knew from the beginning that I needed to be super careful about COVID. I have never had a fully functional respiratory system (astma and allergies), and I am dealing with PTSD and also the aftermath of some bad Lyme infections, both also lead to brain fog. Still, and in spite of all the vaccine and booster shots, I caught it twice: in February and April this year. I went to my doctor in mid-April and said I suspected long COVID, and he took all the tests to prove it, but -- probably because of the brain fog -- I misunderstood him and thought he said there was nothing to do about it. Then at the end of April I caught some other random virus, and that was the last straw. I am only barely functioning, and like it says in the article, I can hold up for a day, but then the next several days are a mess. I am so angry/sad/frustrated/grieving.
Luckily, many of the people I work with have gone through or are still going through the same or similar, so there is no pressure. We do the best we can and cover for each other. One co-worker doesn't seem to get it though. Yesterday, she said in a concerned yet menacing voice: aren't you sick a lot? I almost screamed at her. But I quietly repeated that I have told her earlier, several times, that I have Long COVID. It's not going away for a while.
I do feel that some symptoms disappeared when I took a long break from everything., even seeing my family. I have my senses of smell and taste fully back now. And the respiratory symptoms are back to pre-COVID levels. I also feel my energy level is a bit higher, I can walk 10.000 steps a day now, which I couldn't in June. I'm not running or working out, though, and I wonder if that will ever happen again.
Some practical stuff: I keep a corona-diary, where I briefly note the day's form, that's how I know there is some improvement. I make lists for everything, all the time. If something isn't on a list, it doesn't happen. I think I have registered that if I eat too many carbs in a day, everything gets worse, but even though I keep an accurate log of what I eat, one person is just anecdata.
posted by mumimor at 11:05 AM on September 13, 2022 [22 favorites]
I knew from the beginning that I needed to be super careful about COVID. I have never had a fully functional respiratory system (astma and allergies), and I am dealing with PTSD and also the aftermath of some bad Lyme infections, both also lead to brain fog. Still, and in spite of all the vaccine and booster shots, I caught it twice: in February and April this year. I went to my doctor in mid-April and said I suspected long COVID, and he took all the tests to prove it, but -- probably because of the brain fog -- I misunderstood him and thought he said there was nothing to do about it. Then at the end of April I caught some other random virus, and that was the last straw. I am only barely functioning, and like it says in the article, I can hold up for a day, but then the next several days are a mess. I am so angry/sad/frustrated/grieving.
Luckily, many of the people I work with have gone through or are still going through the same or similar, so there is no pressure. We do the best we can and cover for each other. One co-worker doesn't seem to get it though. Yesterday, she said in a concerned yet menacing voice: aren't you sick a lot? I almost screamed at her. But I quietly repeated that I have told her earlier, several times, that I have Long COVID. It's not going away for a while.
I do feel that some symptoms disappeared when I took a long break from everything., even seeing my family. I have my senses of smell and taste fully back now. And the respiratory symptoms are back to pre-COVID levels. I also feel my energy level is a bit higher, I can walk 10.000 steps a day now, which I couldn't in June. I'm not running or working out, though, and I wonder if that will ever happen again.
Some practical stuff: I keep a corona-diary, where I briefly note the day's form, that's how I know there is some improvement. I make lists for everything, all the time. If something isn't on a list, it doesn't happen. I think I have registered that if I eat too many carbs in a day, everything gets worse, but even though I keep an accurate log of what I eat, one person is just anecdata.
posted by mumimor at 11:05 AM on September 13, 2022 [22 favorites]
Oh yeah, my diary has been super helpful. That's the only way I realize there's progress, because the progress is so slow - its small increments on 2-4 week timelines.
posted by entropone at 12:10 PM on September 13, 2022 [6 favorites]
posted by entropone at 12:10 PM on September 13, 2022 [6 favorites]
Executive dysfunction on top of already have executive dysfunction!
Yeah, as someone else who sometimes experiences both ADHD and brain fog, they are distinctly different flavors of brain-not-working/executive dysfunction. For me brain fog is an overall winding down of cognitive resources: I'm emotionally reactive, can only think slowly, am easily frustrated and have considerably more difficulty imagining alternate approaches to problems. By contrast, my biggest ADHD features tend to be "stickiness" and hyperfixation, difficulty changing tasks or focus streams, and occasionally difficulties initiating motion. That's the piece with the most overlap with brain fog, but even then it's possible to have one and not the other.
I will note that as far as I'm aware I don't have migraines or chronic fatigue; I generally experience brain fog as a consequence of sleep deprivation, forgetting to eat for longer than 18hours, dehydration, med interactions and/or sensory overload. (Brain fog makes meltdowns WAY more likely, too; sensory overload and brain fog are a horrible positive feedback loop that like to travel together.)
posted by sciatrix at 12:26 PM on September 13, 2022 [7 favorites]
Yeah, as someone else who sometimes experiences both ADHD and brain fog, they are distinctly different flavors of brain-not-working/executive dysfunction. For me brain fog is an overall winding down of cognitive resources: I'm emotionally reactive, can only think slowly, am easily frustrated and have considerably more difficulty imagining alternate approaches to problems. By contrast, my biggest ADHD features tend to be "stickiness" and hyperfixation, difficulty changing tasks or focus streams, and occasionally difficulties initiating motion. That's the piece with the most overlap with brain fog, but even then it's possible to have one and not the other.
I will note that as far as I'm aware I don't have migraines or chronic fatigue; I generally experience brain fog as a consequence of sleep deprivation, forgetting to eat for longer than 18hours, dehydration, med interactions and/or sensory overload. (Brain fog makes meltdowns WAY more likely, too; sensory overload and brain fog are a horrible positive feedback loop that like to travel together.)
posted by sciatrix at 12:26 PM on September 13, 2022 [7 favorites]
I feel like I should mention that the only reason I made the effort to make that comment was because it’s so true.
posted by bendy
...and so short.
posted by Jane the Brown at 2:00 PM on September 13, 2022
posted by bendy
...and so short.
posted by Jane the Brown at 2:00 PM on September 13, 2022
I am really lucky that my long Covid, following catching it this March, has been mild. The brainfog is relatively light now, manifesting as sometimes spotty mid-term memory, especially when I'm tired. The fatigue wall I run into if I do anything involving more exertion than walking around at a relaxed pace (such as, say, lift up my child for more than a few seconds) has lingered, though, and I hate it.
To all those going through worse, my utmost sympathies. That as a larger society we're dropping the ball on what needs to be done to stop degrading a significant percentage of our members is, on my calmer days, infuriating. (I can't go HULK SMASH because, well, fatigue wall.)
posted by Quasirandom at 3:40 PM on September 13, 2022 [7 favorites]
To all those going through worse, my utmost sympathies. That as a larger society we're dropping the ball on what needs to be done to stop degrading a significant percentage of our members is, on my calmer days, infuriating. (I can't go HULK SMASH because, well, fatigue wall.)
posted by Quasirandom at 3:40 PM on September 13, 2022 [7 favorites]
I got some sort of post-viral syndrome in my early 20s, from a common infection that 99% of people's bodies manage with little issue. The brain fog and fatigue hit me like a train. It's been a decade and although I've slowly clawed my way out of the worst of it, I'll never run at 100% again.
I'm glad there is attention being paid to this now. Maybe one day it will circle back to benefit me. I'm so angry, though. I was belittled and doubted by medical professionals for years. I lost so many opportunities because there wasn't help when I needed it.
I remember when I was energetic, clever and fun, beloved by teachers and "destined for great things." I took ten mile walks, just cuz! I used to absorb information like a sponge, manipulating abstract ideas in my mind like a high-wire act. I expected to finish a PhD early and go on to a rewarding career in a competitive field.
Now I'm a disabled college dropout, eking out a meager living in poverty. I struggle to work even part time, I have credit card debt from years I couldn't work at all, I require a special expensive diet to keep my symptoms at bay, and after years of chronic illness my body developed autoimmune issues that just break my will to live some days. My life path was completely derailed. And the worst part is when people who ought to be on my side imply it's somehow my fault! Lazy, unfocused, slacker, burnout. I've heard it all. I try to let these experiences make me kinder, more considerate.. hone my activism to a sharp point. Fuck it hurts though.
I feel for all you long-haulers. I'm sad you're in this shitty club too.
posted by lloquat at 4:45 PM on September 13, 2022 [35 favorites]
I'm glad there is attention being paid to this now. Maybe one day it will circle back to benefit me. I'm so angry, though. I was belittled and doubted by medical professionals for years. I lost so many opportunities because there wasn't help when I needed it.
I remember when I was energetic, clever and fun, beloved by teachers and "destined for great things." I took ten mile walks, just cuz! I used to absorb information like a sponge, manipulating abstract ideas in my mind like a high-wire act. I expected to finish a PhD early and go on to a rewarding career in a competitive field.
Now I'm a disabled college dropout, eking out a meager living in poverty. I struggle to work even part time, I have credit card debt from years I couldn't work at all, I require a special expensive diet to keep my symptoms at bay, and after years of chronic illness my body developed autoimmune issues that just break my will to live some days. My life path was completely derailed. And the worst part is when people who ought to be on my side imply it's somehow my fault! Lazy, unfocused, slacker, burnout. I've heard it all. I try to let these experiences make me kinder, more considerate.. hone my activism to a sharp point. Fuck it hurts though.
I feel for all you long-haulers. I'm sad you're in this shitty club too.
posted by lloquat at 4:45 PM on September 13, 2022 [35 favorites]
So I had covid back in early July, and am evidently on the slow-to-recover but still noticeably improving side. And I’ve got questions.
Like, how do I know if I’m getting post-exertion malaise? I tried my regular workout for the first time last week— but I got exposed to covid again the next day. So, were my symptoms for the next few days due to fighting off the new exposure, or to trying to go back too fast?
And for brain fog, I’m definitely a little worse in the getting-focus-started department, but is that brain fog or just how damned behind I feel after being out sick for 3 months? Has my usual ability to, say, lose my car entirely actually gotten worse? It feels like it, but I’m not exactly starting with a lot of firepower there in the first place.
I am going to have to replace the battery on the key fob though, The car only honks when I’m already within about 10 meters, and that just isn’t very useful.
posted by nat at 12:13 AM on September 14, 2022 [3 favorites]
Like, how do I know if I’m getting post-exertion malaise? I tried my regular workout for the first time last week— but I got exposed to covid again the next day. So, were my symptoms for the next few days due to fighting off the new exposure, or to trying to go back too fast?
And for brain fog, I’m definitely a little worse in the getting-focus-started department, but is that brain fog or just how damned behind I feel after being out sick for 3 months? Has my usual ability to, say, lose my car entirely actually gotten worse? It feels like it, but I’m not exactly starting with a lot of firepower there in the first place.
I am going to have to replace the battery on the key fob though, The car only honks when I’m already within about 10 meters, and that just isn’t very useful.
posted by nat at 12:13 AM on September 14, 2022 [3 favorites]
This has been really helpful and terrifying; there is someone I love who has been forgetting conversations and I have been confused and mystified; they were also a Covid denier and caught it three times. This really helps explain a lot.
posted by corb at 1:31 AM on September 14, 2022 [7 favorites]
posted by corb at 1:31 AM on September 14, 2022 [7 favorites]
Just an example. Tuesday is my teaching day this semester. And teaching is from 8AM to 5PM. with office work in the lunch break. Since we have changed the course we are teaching radically, I have been working on new lectures since Friday. Wednesday and Thursday where stuffed with some completely different tasks.
So I knew today would be bad. But it started in the very first hour of my workday. I knew I had to look something up, and opened the browser, and then I couldn't remember what it was. I still don't know, I only know it is important. I have done other stuff during the morning's work, so it' not all wasted, but I am extremely tired, near wasted, and I am also very worried about what that lost thing might be.
I'm working from home, so I'm going to take a nap now, but that is just pushing things ahead.
posted by mumimor at 4:18 AM on September 14, 2022 [4 favorites]
So I knew today would be bad. But it started in the very first hour of my workday. I knew I had to look something up, and opened the browser, and then I couldn't remember what it was. I still don't know, I only know it is important. I have done other stuff during the morning's work, so it' not all wasted, but I am extremely tired, near wasted, and I am also very worried about what that lost thing might be.
I'm working from home, so I'm going to take a nap now, but that is just pushing things ahead.
posted by mumimor at 4:18 AM on September 14, 2022 [4 favorites]
It's weird how when people talk about the tragedy of young/pro athletes being diminished in their strength or speed after COVID that's considered ableist but not when people talk about the horrors of being... Regular-Type Smart, Just Like the Normals.
Honestly, neither of these things are ableist to me. I think no matter what your initial baseline is, having something so fundamental about who you are as a person change, maybe permanently, is disorienting and horrible.
I say this as someone who has a chronic genetic condition (EDS) that flared up so badly several years ago that it has just permanently wrecked my mobility. I used to walk 5 miles - at a very fast pace - and it was nothing to me. Now some days, 1/8 or 1/4 of a mile is a struggle. I walk so slowly. I'm in pain. I used to run, bike, swim - I miss running SO MUCH. And I've been slowly trying to get back to it, but then I injure my joints again, it takes forever to heal, and I have to start all over. I feel trapped in my own body.
Is that better or worse than the brain fog and other cognitive symptoms I have? I don't know. I don't even know why I am experiencing this CFS type stuff. It started around the same time of my initial EDS related flare up, which was also shortly after I had a bad viral illness (in Sep/Oct 2019, so before COVID presumably).
I'm still wrapping my head around it. I kept thinking it would get better. Part of me still keeps waiting and hoping. And it has, sort of, sometimes. But I think part of it is just I start to forget what I used to be like. Then I have brief flashes, and I feel the loss all over again.
But I'll admit, the brain dysfunction feels more...incongruous and more painful. I was always a physically active, even athletic, person, but that wasn't how I defined myself. I hate to say it, but I did define myself by how fast I could think, how smart I was, how clever, all that bullshit.
And as someone was saying upthread (sorry, too tired and brain dead to track down this comment), other people are always saying I seem the same. When I mention forgetting appointments, having to track EVERYTHING in my calendar, my desk filled with post it notes to remind me of things, all the lists, and still I make mistakes and forget in ways I never used to. And doctors and friends shrug and say, "that's normal" BUT it wasn't for me. Not like this.
It's like the difference between walking on dry land and walking in water. Sure, I can walk along the bottom of a pool, but it's so much more effort and so much slower and more cumbersome and just not the same as walking on dry land. (Of course, both things are now hard for me.) Just because I can push through and pretend to be normal doesn't mean I am.
I don't know. If this seems ableist, I'm sorry. But I don't think it's wrong to express loss and frustration and even anger about having fundamental parts of your life taken from you, especially when it sneaks up on you like this, when no one believes you and takes you seriously, when you know you may never get a clear answer on what is happening or why.
I just know that my life as I know it was taken from me, and I feel like if I just knew why, like had a real answer and prognosis, a clear path forward, or even if I knew that this is just how it was always going to be so I can work on accepting this...but I don't have any of that. The past 3 years of my life have been like a very slow motion train wreck. I know I'm not alone in this, even if my particular case predates the pandemic.
And yes, Long Covid TERRIFIES me. Because one thing I've learned is it can always be worse. I recently started a PhD program in STEM, and I feel like I'm insane for doing this. I feel like I'm in a race against the clock to get through this program before the tide of all these disabilities drowns me completely. I may get a PhD only to find I can never work again.
I keep hoping maybe the one bright side to this horrible darkness will be that this pushes doctors and researchers to better understand CFS/ME and these related conditions like Long Covid. But I'm not hopeful.
posted by litera scripta manet at 10:23 AM on September 14, 2022 [24 favorites]
Honestly, neither of these things are ableist to me. I think no matter what your initial baseline is, having something so fundamental about who you are as a person change, maybe permanently, is disorienting and horrible.
I say this as someone who has a chronic genetic condition (EDS) that flared up so badly several years ago that it has just permanently wrecked my mobility. I used to walk 5 miles - at a very fast pace - and it was nothing to me. Now some days, 1/8 or 1/4 of a mile is a struggle. I walk so slowly. I'm in pain. I used to run, bike, swim - I miss running SO MUCH. And I've been slowly trying to get back to it, but then I injure my joints again, it takes forever to heal, and I have to start all over. I feel trapped in my own body.
Is that better or worse than the brain fog and other cognitive symptoms I have? I don't know. I don't even know why I am experiencing this CFS type stuff. It started around the same time of my initial EDS related flare up, which was also shortly after I had a bad viral illness (in Sep/Oct 2019, so before COVID presumably).
I'm still wrapping my head around it. I kept thinking it would get better. Part of me still keeps waiting and hoping. And it has, sort of, sometimes. But I think part of it is just I start to forget what I used to be like. Then I have brief flashes, and I feel the loss all over again.
But I'll admit, the brain dysfunction feels more...incongruous and more painful. I was always a physically active, even athletic, person, but that wasn't how I defined myself. I hate to say it, but I did define myself by how fast I could think, how smart I was, how clever, all that bullshit.
And as someone was saying upthread (sorry, too tired and brain dead to track down this comment), other people are always saying I seem the same. When I mention forgetting appointments, having to track EVERYTHING in my calendar, my desk filled with post it notes to remind me of things, all the lists, and still I make mistakes and forget in ways I never used to. And doctors and friends shrug and say, "that's normal" BUT it wasn't for me. Not like this.
It's like the difference between walking on dry land and walking in water. Sure, I can walk along the bottom of a pool, but it's so much more effort and so much slower and more cumbersome and just not the same as walking on dry land. (Of course, both things are now hard for me.) Just because I can push through and pretend to be normal doesn't mean I am.
I don't know. If this seems ableist, I'm sorry. But I don't think it's wrong to express loss and frustration and even anger about having fundamental parts of your life taken from you, especially when it sneaks up on you like this, when no one believes you and takes you seriously, when you know you may never get a clear answer on what is happening or why.
I just know that my life as I know it was taken from me, and I feel like if I just knew why, like had a real answer and prognosis, a clear path forward, or even if I knew that this is just how it was always going to be so I can work on accepting this...but I don't have any of that. The past 3 years of my life have been like a very slow motion train wreck. I know I'm not alone in this, even if my particular case predates the pandemic.
And yes, Long Covid TERRIFIES me. Because one thing I've learned is it can always be worse. I recently started a PhD program in STEM, and I feel like I'm insane for doing this. I feel like I'm in a race against the clock to get through this program before the tide of all these disabilities drowns me completely. I may get a PhD only to find I can never work again.
I keep hoping maybe the one bright side to this horrible darkness will be that this pushes doctors and researchers to better understand CFS/ME and these related conditions like Long Covid. But I'm not hopeful.
posted by litera scripta manet at 10:23 AM on September 14, 2022 [24 favorites]
I feel for the people who have lost their sense of smell and taste. I have been anosmic since late 2019. It was not COVID related, but a viral ear infection. This was following a severe depression from 2014-2016 that robbed me of my sense of smell and taste. An excellent therapist helped me to regain these precious senses. He was the best with dream analysis. So when I lost my sense of smell and taste once more it hit me very hard.
posted by DJZouke at 10:48 AM on September 14, 2022 [7 favorites]
posted by DJZouke at 10:48 AM on September 14, 2022 [7 favorites]
It's weird how when people talk about the tragedy of young/pro athletes being diminished in their strength or speed after COVID that's considered ableist but not when people talk about the horrors of being... Regular-Type Smart, Just Like the Normals.
You can frame the loss in ableist ways, but it is not inherently ableist to be sad about a loss. It's sad when someone loses something important to them, even if it wasn't something that everyone needs, wants, or has. The tragedy is not the new state of being; it's the loss itself, the forced transition.
It would be sad if a professional piano player lost a hand in an accident, even though having only one hand is not an inferior way to be.
It would be sad if a researcher suffered a traumatic brain injury and could no longer understand academic papers, even though being developmentally disabled is not an inferior way to be.
It would be sad if a child lost their father, even though being raised by a single mother is not an inferior way to be.
Not to mention, many people disabled by chronic conditions - including ones that cause things like fatigue, pain, and brain fog - reject the framing that these are not problems. They sure can be! We would welcome treatments that would make them go away because they are unpleasant to deal with. It is very presumptuous to imply that we are being ableist against ourselves by discussing how these things impact our lives. Some of the negative impacts are due to an ableist society that does not understand or accommodate us, but some, like pain, like loss, are just a part of the experience many people have.
posted by Kutsuwamushi at 11:31 AM on September 14, 2022 [19 favorites]
You can frame the loss in ableist ways, but it is not inherently ableist to be sad about a loss. It's sad when someone loses something important to them, even if it wasn't something that everyone needs, wants, or has. The tragedy is not the new state of being; it's the loss itself, the forced transition.
It would be sad if a professional piano player lost a hand in an accident, even though having only one hand is not an inferior way to be.
It would be sad if a researcher suffered a traumatic brain injury and could no longer understand academic papers, even though being developmentally disabled is not an inferior way to be.
It would be sad if a child lost their father, even though being raised by a single mother is not an inferior way to be.
Not to mention, many people disabled by chronic conditions - including ones that cause things like fatigue, pain, and brain fog - reject the framing that these are not problems. They sure can be! We would welcome treatments that would make them go away because they are unpleasant to deal with. It is very presumptuous to imply that we are being ableist against ourselves by discussing how these things impact our lives. Some of the negative impacts are due to an ableist society that does not understand or accommodate us, but some, like pain, like loss, are just a part of the experience many people have.
posted by Kutsuwamushi at 11:31 AM on September 14, 2022 [19 favorites]
My new doctor's office lets me see the notes he writes for each visit, which is an amazing piece of transparency I've never seen before, and it lets me see that he wrote things like "Patient is well groomed, pleasant, cooperative, alert, oriented, no apparent distress". "You look healthy to me."
and it's the weirdest thing to see because by my standards I am NOT well groomed. I am not alert. I'm having severe memory problems. I feel like crap and I feel very distressed about my health! And I SAID ALL THESE THINGS IN WORDS! I literally said "Well, I might look healthy, but I don't feel healthy." I said "sometimes it's so bad I feel like I'm dying, and I'm worried I have cancer." That's a fucking distressing thing for me to be feeling and saying out loud. How is that worth noting?
I've spent three or four years with a hunch, an intuitive feeling, that doctors are not listening to me when I describe my symptoms. Some kind of failure to communicate. Doctors are using their eyes and ears and looking at bloodwork, and the markers they're looking at look healthy. And I get where they're coming from. Now I can see some evidence of this gap in communication, and god help me but I don't know how the hell I can possibly bridge it, especially without sounding disrespectful or obnoxious.
posted by Rainbo Vagrant at 1:29 PM on September 14, 2022 [13 favorites]
and it's the weirdest thing to see because by my standards I am NOT well groomed. I am not alert. I'm having severe memory problems. I feel like crap and I feel very distressed about my health! And I SAID ALL THESE THINGS IN WORDS! I literally said "Well, I might look healthy, but I don't feel healthy." I said "sometimes it's so bad I feel like I'm dying, and I'm worried I have cancer." That's a fucking distressing thing for me to be feeling and saying out loud. How is that worth noting?
I've spent three or four years with a hunch, an intuitive feeling, that doctors are not listening to me when I describe my symptoms. Some kind of failure to communicate. Doctors are using their eyes and ears and looking at bloodwork, and the markers they're looking at look healthy. And I get where they're coming from. Now I can see some evidence of this gap in communication, and god help me but I don't know how the hell I can possibly bridge it, especially without sounding disrespectful or obnoxious.
posted by Rainbo Vagrant at 1:29 PM on September 14, 2022 [13 favorites]
I just got my bivalent booster (being a healthcare worker does have a few perks)
At least in the US, you don't have to be a healthcare worker to get the bivalent booster. There's shots available though CVS and Walgreens, and so many open appointments here that you can often get one the same day. At worst, it's a three day wait. It's very very very easy for anyone in the US to get this shot right now.
posted by subdee at 2:09 PM on September 14, 2022 [3 favorites]
At least in the US, you don't have to be a healthcare worker to get the bivalent booster. There's shots available though CVS and Walgreens, and so many open appointments here that you can often get one the same day. At worst, it's a three day wait. It's very very very easy for anyone in the US to get this shot right now.
posted by subdee at 2:09 PM on September 14, 2022 [3 favorites]
Depends on the region, Seattle-area all appointments have been 3+ weeks out if you didn't get in immediately and some chains still say it's "coming soon". I'm glad you have ready access though, I wish I could have mine already.
posted by CrystalDave at 2:11 PM on September 14, 2022 [3 favorites]
posted by CrystalDave at 2:11 PM on September 14, 2022 [3 favorites]
My HMO sent an email yesterday saying they finally had new boosters, but limited quantity, please. Whereas Walgreens had them within less than a week of permission to get them coming out. Seriously, the drugstores are doing better at this.
posted by jenfullmoon at 2:16 PM on September 14, 2022
posted by jenfullmoon at 2:16 PM on September 14, 2022
The article has just been updated with an audio version (potentially useful to some brain fog sufferers, and anyone else who has trouble reading long texts). The audio controls are just above the main text of the article.
posted by mbrubeck at 2:18 PM on September 14, 2022 [4 favorites]
posted by mbrubeck at 2:18 PM on September 14, 2022 [4 favorites]
Regular-Type Smart, Just Like the Normals.I wasn't brilliant. I was just regular type smart with some survival skills built around my ADHD which made me look smart but was just impulsive saying anything in my head.
I'm less than "regular type smart" and I hate it and I don't want worse. I also miss being skinny and young, is that ableist too? Seriously.
posted by tilde at 3:29 PM on September 14, 2022 [5 favorites]
Oh, and Ed Yong recorded the audio version himself. On Twitter he notes, “This is probably the moment when a lot of long-haulers realize that I am British.”
posted by mbrubeck at 3:43 PM on September 14, 2022 [6 favorites]
posted by mbrubeck at 3:43 PM on September 14, 2022 [6 favorites]
> Depends on the region, Seattle-area all appointments have been 3+ weeks out if you didn't get in immediately and some chains still say it's "coming soon"
If you don't mind going to Everett, Rite Aid can see you next week (as of this moment). I'm seeing lots of appointments in a week or two around 98155.
posted by The corpse in the library at 5:06 PM on September 14, 2022
If you don't mind going to Everett, Rite Aid can see you next week (as of this moment). I'm seeing lots of appointments in a week or two around 98155.
posted by The corpse in the library at 5:06 PM on September 14, 2022
I'm sorry, I had too many tabs open and didn't realize this was the long hauler thread. I didn't mean to divert the discussion.
posted by The corpse in the library at 5:06 PM on September 14, 2022
posted by The corpse in the library at 5:06 PM on September 14, 2022
I was really startled to read Yong’s description of brain fog. That has definitely happened to me; on those days, I keep it together in public but at home I have to painstakingly talk myself through simple chores and Mr. eirias complains about me trailing off mid sentence. It’s worst after a night or three of sleep deprivation, and usually resolves after a night or two of good sleep. I’ll count myself lucky for that, I guess.
posted by eirias at 5:56 PM on September 14, 2022 [4 favorites]
posted by eirias at 5:56 PM on September 14, 2022 [4 favorites]
Do you wear a helmet every time you ride in a car?
Roughly 400 thousand people are injured in car accidents every year in the US. Over 30,000 die. We mandated seatbelts, airbags and heavily regulate automobile design plus we have hundreds of thousands of cars having mandated recalls for safety modifications per year. We have extensive laws legislating the careful use of automobiles in almost every situation (albeit with very lax enforcement and inconsistent and racist punishment). Cars are so universally recognized as dangerous that you are required to have liability insurance to operate one almost everywhere on earth off of your own private property. Cars are so ridiculously dangerous that fearing them is practically the very first thing that parents teach their children often with it being the one occasion where they use corporal punishment.
If you are going to argue by analogy at least pick a better analogy.
posted by srboisvert at 4:27 AM on September 15, 2022 [11 favorites]
Roughly 400 thousand people are injured in car accidents every year in the US. Over 30,000 die. We mandated seatbelts, airbags and heavily regulate automobile design plus we have hundreds of thousands of cars having mandated recalls for safety modifications per year. We have extensive laws legislating the careful use of automobiles in almost every situation (albeit with very lax enforcement and inconsistent and racist punishment). Cars are so universally recognized as dangerous that you are required to have liability insurance to operate one almost everywhere on earth off of your own private property. Cars are so ridiculously dangerous that fearing them is practically the very first thing that parents teach their children often with it being the one occasion where they use corporal punishment.
If you are going to argue by analogy at least pick a better analogy.
posted by srboisvert at 4:27 AM on September 15, 2022 [11 favorites]
Got my bivalent booster on Wednesday. Not going to stop masking but I'll feel a little better after two weeks.
posted by octothorpe at 4:52 AM on September 15, 2022 [5 favorites]
posted by octothorpe at 4:52 AM on September 15, 2022 [5 favorites]
Thanks for sharing, this is a really good writeup as to what the brain fog part of long covid is like. Too brain tired for Netflix, I'd describe it.
The reason to bring up young athletes is it's much harder to dismiss a 23-year old runner who was hitting personal bests in the 6 or even 5 minute mile range, but now who gets winded walking up a flight of stairs, compared to the complains of getting windied by a couch potato who couldn't run a mile before covid anyway (me). I told my doctor something was wrong and they just dismissed me as needing more exercise. Back when everyone was discovering long covid, disbelievers didn't want to accept believe that long covid was a thing, so just gaining recognition was an uphill battle. I wish the world we lived in was less ableist, but the case studies of athletes, and from doctors who were also afflicted by long covid; if that's what it takes for my disease to be accepted as valid, then that's what it takes.
Still, inability to do any sort of physical exertion is a visible issue, just put the patient on a treadmill, even if the underlying cause is pernicious. Brain fog is just so insidious because it's totally isolating because it takes away your faculties to tell people about it and get help for your problem. Especially if you caught this early, as the world was first learning about covid and long covid. There's tons more still to learn about it in order to be able to restore function in those that have lost it though.
I'm starting TMS in a week or two. I'm really hopeful it'll restore some more of my previous cognitive function as it has helped others. There aren't the sort of longitundinal studies for long covid that you'd really want, but I'll note it is FDA approved for garden-variety depression.
posted by fragmede at 3:23 PM on September 15, 2022 [5 favorites]
The reason to bring up young athletes is it's much harder to dismiss a 23-year old runner who was hitting personal bests in the 6 or even 5 minute mile range, but now who gets winded walking up a flight of stairs, compared to the complains of getting windied by a couch potato who couldn't run a mile before covid anyway (me). I told my doctor something was wrong and they just dismissed me as needing more exercise. Back when everyone was discovering long covid, disbelievers didn't want to accept believe that long covid was a thing, so just gaining recognition was an uphill battle. I wish the world we lived in was less ableist, but the case studies of athletes, and from doctors who were also afflicted by long covid; if that's what it takes for my disease to be accepted as valid, then that's what it takes.
Still, inability to do any sort of physical exertion is a visible issue, just put the patient on a treadmill, even if the underlying cause is pernicious. Brain fog is just so insidious because it's totally isolating because it takes away your faculties to tell people about it and get help for your problem. Especially if you caught this early, as the world was first learning about covid and long covid. There's tons more still to learn about it in order to be able to restore function in those that have lost it though.
I'm starting TMS in a week or two. I'm really hopeful it'll restore some more of my previous cognitive function as it has helped others. There aren't the sort of longitundinal studies for long covid that you'd really want, but I'll note it is FDA approved for garden-variety depression.
posted by fragmede at 3:23 PM on September 15, 2022 [5 favorites]
I don't know. If this seems ableist, I'm sorry. But I don't think it's wrong to express loss and frustration and even anger about having fundamental parts of your life taken from you, especially when it sneaks up on you like this, when no one believes you and takes you seriously, when you know you may never get a clear answer on what is happening or why.
For what it's worth, I don't think it's ableist to mourn a loss of some kind of ability or identity in one's life. On an individual level that's fundamentally human; it would be monstrous to expect any given individual to be perfectly sanguine about such a huge change.
Structurally, however, I think it IS important to look at how we discuss cognitive impairment. A thing I have thought for many decades now, ever since I was a so-called smart kid watching adults around me try to navigate various bureaucracies for survival, is that you basically need to be either rich or brilliant to thrive in our world, and that is deeply wrong. Our culture is every bit as intellectually ableist as it is physically. There should be no stigma around needing to keep lists or set reminders or rest one's mind often; AND, it should be possible to live a life that is not overburdened with administrative minutiae and heavy executive function demands.
Fundamentally from a MeFi perspective it comes down to just, again, everyone working to remember who might be in the room with you. Early discussions of lockdown and quarantine were full of reminders to be careful how we complained about the isolation and restriction, because for a lot of people that's just life. Conversations about poverty often contain reminders that poor people are right here. So, you know. Can't hurt to pause and think what you're saying about someone who has always needed to take notes or keep a calendar when you talk about how nightmarish and diminishing it is for you.
posted by We put our faith in Blast Hardcheese at 10:14 AM on September 16, 2022 [1 favorite]
For what it's worth, I don't think it's ableist to mourn a loss of some kind of ability or identity in one's life. On an individual level that's fundamentally human; it would be monstrous to expect any given individual to be perfectly sanguine about such a huge change.
Structurally, however, I think it IS important to look at how we discuss cognitive impairment. A thing I have thought for many decades now, ever since I was a so-called smart kid watching adults around me try to navigate various bureaucracies for survival, is that you basically need to be either rich or brilliant to thrive in our world, and that is deeply wrong. Our culture is every bit as intellectually ableist as it is physically. There should be no stigma around needing to keep lists or set reminders or rest one's mind often; AND, it should be possible to live a life that is not overburdened with administrative minutiae and heavy executive function demands.
Fundamentally from a MeFi perspective it comes down to just, again, everyone working to remember who might be in the room with you. Early discussions of lockdown and quarantine were full of reminders to be careful how we complained about the isolation and restriction, because for a lot of people that's just life. Conversations about poverty often contain reminders that poor people are right here. So, you know. Can't hurt to pause and think what you're saying about someone who has always needed to take notes or keep a calendar when you talk about how nightmarish and diminishing it is for you.
posted by We put our faith in Blast Hardcheese at 10:14 AM on September 16, 2022 [1 favorite]
Not to mention, many people disabled by chronic conditions - including ones that cause things like fatigue, pain, and brain fog - reject the framing that these are not problems. They sure can be! We would welcome treatments that would make them go away because they are unpleasant to deal with. It is very presumptuous to imply that we are being ableist against ourselves by discussing how these things impact our lives.
To be clear I did not mean to imply that. I really should have been less flippant, especially as this is really not a super-prevalent thing on MeFi. However I will say that if you start wading into the depths of Long Covid twitter and disability twitter you will absolutely find people ready to say that many people with disabilities are ableist against themselves and should absolutely NOT regard any sort of condition as a problem. Until it affects the brain, and then well, that's different. And that's the discrepancy I was poking at above.
posted by We put our faith in Blast Hardcheese at 10:21 AM on September 16, 2022 [1 favorite]
To be clear I did not mean to imply that. I really should have been less flippant, especially as this is really not a super-prevalent thing on MeFi. However I will say that if you start wading into the depths of Long Covid twitter and disability twitter you will absolutely find people ready to say that many people with disabilities are ableist against themselves and should absolutely NOT regard any sort of condition as a problem. Until it affects the brain, and then well, that's different. And that's the discrepancy I was poking at above.
posted by We put our faith in Blast Hardcheese at 10:21 AM on September 16, 2022 [1 favorite]
I don’t find that to be representative of any disability community that I’m a part of, and in fact have never heard it until your comment. I think it’s worthwhile to be critical of whether viewpoints are representative or extremist. Because there are extremists in every group of people that you can pick. Disabled people are no different in that regard. And it sucks to have extremist viewpoint held up as strawmen and used to lash out at other members of the community. Even out of frustration at feeling as though they were directed against you. I appreciate you saying that your comment was flippant. It has been needling me since you made it, as though that attitude was anywhere in the article or thread, instead of being pretty close to the exact opposite of what was happening here. If you need to vent your frustration at people on Twitter, maybe do it on Twitter instead of here. Because that … hurt.
posted by Bottlecap at 11:45 AM on September 16, 2022 [4 favorites]
posted by Bottlecap at 11:45 AM on September 16, 2022 [4 favorites]
I'm disabled and I'd never heard that framing either. It actually sounded a bit like an ableist gotcha to limit the ways disabled people can talk about their experiences.
posted by Ballad of Peckham Rye at 12:23 PM on September 16, 2022 [6 favorites]
posted by Ballad of Peckham Rye at 12:23 PM on September 16, 2022 [6 favorites]
My apologies. It was in fact intended in the opposite direction, to expand the ways in which people can frame their experiences, and I apologize that it was clearly a failure. My aim is to have room for people to discuss the losses, pain, and negative feelings associated with a change in any type of ability, without being made to feel like they are "letting down the side" so to speak.
And no, that was not happening in this thread. I don't think it's accurate to say it doesn't happen ever on this site, but I realize also that like Twitter this site is large and many things can be happening on it at any given time which all people will not see.
And, I appreciate this:
I think it’s worthwhile to be critical of whether viewpoints are representative or extremist
Because I get all of my twitter second-hand (I don't have an account) when people send or show me tweets or links. Those folks will tend to refer to these as coming from "disability twitter" or "long covid twitter." Since they're much closer to those communities than I am I had not paused to consider whether maybe they're...wrong about how representative those are.
posted by We put our faith in Blast Hardcheese at 2:27 PM on September 16, 2022 [3 favorites]
And no, that was not happening in this thread. I don't think it's accurate to say it doesn't happen ever on this site, but I realize also that like Twitter this site is large and many things can be happening on it at any given time which all people will not see.
And, I appreciate this:
I think it’s worthwhile to be critical of whether viewpoints are representative or extremist
Because I get all of my twitter second-hand (I don't have an account) when people send or show me tweets or links. Those folks will tend to refer to these as coming from "disability twitter" or "long covid twitter." Since they're much closer to those communities than I am I had not paused to consider whether maybe they're...wrong about how representative those are.
posted by We put our faith in Blast Hardcheese at 2:27 PM on September 16, 2022 [3 favorites]
I will gently suggest that I have not always found the loudest Twitter voices to be either the most well informed or the most nuanced... especially when things get messy. Unfortunately, the question of whether the experience of disability is a frustrating limitation or a unique, valuable, and inextricable part of the self is pretty much by definition a deeply messy one. People often give very different answers at different times, depending on the point they're trying to make.
Similarly, internalized ableism (as with any *ism) is always a bit fraught and really contextual. I won't say it doesn't exist, but it is not something that I think it's wise to be cavalier about assigning as a motivation for someone else's feelings or actions.
posted by sciatrix at 2:54 PM on September 16, 2022 [4 favorites]
Similarly, internalized ableism (as with any *ism) is always a bit fraught and really contextual. I won't say it doesn't exist, but it is not something that I think it's wise to be cavalier about assigning as a motivation for someone else's feelings or actions.
posted by sciatrix at 2:54 PM on September 16, 2022 [4 favorites]
I won't say it doesn't exist, but it is not something that I think it's wise to be cavalier about assigning as a motivation for someone else's feelings or actions.
Which is why, again, I held it up as a bad thing to do? (I just think it's a bad thing to do whether someone is talking about a physical OR intellectual ability.) But I think I had better step away because I don't seem to be clarifying anything very effectively. And I don't have long covid or post-viral brain fog to blame for it, I just wasn't particularly smart to start with.
posted by We put our faith in Blast Hardcheese at 3:02 PM on September 16, 2022 [1 favorite]
Which is why, again, I held it up as a bad thing to do? (I just think it's a bad thing to do whether someone is talking about a physical OR intellectual ability.) But I think I had better step away because I don't seem to be clarifying anything very effectively. And I don't have long covid or post-viral brain fog to blame for it, I just wasn't particularly smart to start with.
posted by We put our faith in Blast Hardcheese at 3:02 PM on September 16, 2022 [1 favorite]
I'm not trying to drive your out or make you feel silly or anything! Sometimes communication just collapses on us, and we have to sort of flap hopefully at one another until we hit the same page.
I was thinking about whether I think cognitive limits are as frustrating as physical ones, actually, comparing the way I feel about my lifelong experiences managing my shit so I don't wind up in a brain fog space to the way I feel about my lifelong experiences with being prone to shortness of breath. I suppose the difference is that I can run metaphorically sometimes even if I can't run physically. I could probably find another way back to that heady sensation of flight and control if incidence of fogginess increased, but ... It would be harder. I might have to spend my resources more dearly to buy it. And that's hard to hold all at once.
posted by sciatrix at 3:12 PM on September 16, 2022 [1 favorite]
I was thinking about whether I think cognitive limits are as frustrating as physical ones, actually, comparing the way I feel about my lifelong experiences managing my shit so I don't wind up in a brain fog space to the way I feel about my lifelong experiences with being prone to shortness of breath. I suppose the difference is that I can run metaphorically sometimes even if I can't run physically. I could probably find another way back to that heady sensation of flight and control if incidence of fogginess increased, but ... It would be harder. I might have to spend my resources more dearly to buy it. And that's hard to hold all at once.
posted by sciatrix at 3:12 PM on September 16, 2022 [1 favorite]
Yeah, brain fog is not something I would wish on my worst enemy...
posted by skaggig at 9:17 AM on September 17, 2022 [2 favorites]
posted by skaggig at 9:17 AM on September 17, 2022 [2 favorites]
Thank you for posting this, Bottlecap. As someone who also has ADHD, this part terrified me: At her worst, she couldn’t unload a dishwasher, because identifying an object, remembering where it should go, and putting it there was too complicated. Sandhya Kambhampati, a data reporter on the Los Angeles Times Data Desk, has suffered from Long Covid for some time. She wrote an essay last year about struggling to find care and her good fortune in becoming patient number five in a treatment program. Recently she wrote a follow-up about the mental health effects of living with Long Covid. Only by taking a sabbatical from work, which she acknowledges few people can do, did her health improve, but it's still challenging.
If you have brain fog or something similar and made the effort to comment, thank you. I have read your comments. I cannot know exactly how hard it is but I understand it is really hard. Sending you all virtual hugs if you want 'em.
posted by Bella Donna at 4:22 AM on September 21, 2022 [2 favorites]
If you have brain fog or something similar and made the effort to comment, thank you. I have read your comments. I cannot know exactly how hard it is but I understand it is really hard. Sending you all virtual hugs if you want 'em.
posted by Bella Donna at 4:22 AM on September 21, 2022 [2 favorites]
Ed Yong is taking a six-month sabbatical to recover from burnout after three years of reporting on the pandemic.
posted by mbrubeck at 7:12 PM on September 30, 2022 [5 favorites]
posted by mbrubeck at 7:12 PM on September 30, 2022 [5 favorites]
Good for him. It's all even more depressing reading these days.
posted by jenfullmoon at 11:05 PM on September 30, 2022
posted by jenfullmoon at 11:05 PM on September 30, 2022
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posted by Flight Hardware, do not touch at 7:44 PM on September 12, 2022 [16 favorites]