"But I knew that all was not ok."
July 6, 2022 10:37 AM Subscribe
Maria Farrell wrote advice for people struggling with the effects of COVID in 2020: "Indefinitely Ill – Post-Covid Fatigue: What to do when your body forgets how to be well": "Because I really only want to say one thing; if you have had Covid-19 (tested or not), and are getting to a month or two on and still feel like you’ve been hit by a bus, please, for the love of God, rest." Last year Ada Palmer wrote about a bad turn in her health: "the resistance to taking medical leave came from me, not others." This month Farrell wrote "Settling in for the long haul": "about how I habituated, or; how I learnt to lie not with my words but my deeds" when coping with life-changing chronic illness.
Farrell previously, previously, previously. From "Settling in for the long haul":
Farrell previously, previously, previously. From "Settling in for the long haul":
But basically the answer is I was sick all the time, sick in a way that’s unimaginable to a well person, because if they felt that bad they’d take time off....Ada Palmer has also shared reflections on her invisible disability, on "Thoughts on a Bad Pain Day and How Teamwork Accumulates" (previously), and "Healthy Work Habits and Self-Care Guide for the Pandemic Crisis".
I managed from my mid-twenties onward by mercilessly slashing any discretionary activities– namely, hobbies, fitness or a social or romantic life – that took an ounce of energy away from work. By year three I could routinely cosplay a well person for 8 hours of gainful employment a day. There was simply no other way to make it, financially. I found in-between places and ways to live. I’m endlessly fascinated by how, in a massive pinball machine of infinite-seeming possible decisions, we stumble on marginally favourable social affordances. What worked for me was living in a succession of foreign countries where my only role was to work and the only people I knew were through work. It seemed normal to only have work friends, seeing them as little as possible and always leaving after the second drink. What worked was going home on Friday night and literally not seeing another person till I went back to work on Monday morning. Compartmentalising life so each set of people I knew assumed the others I referred to were the ones I was more frequently seeing, in my normal, normal life.....
So many millennials are ill with long covid and they just wouldn’t even think of hiding it, like it would never occur to them to accept accommodatory BS like the 2nd wave feminism my generation believed would somehow incrementally fix things. Good for them. I’m glad to see them making connections on social media and puzzling it through together. The fact of them and many others doing this means I’m now much more ‘out’ about my limits, something that feels weird and vulnerable and obscurely shaming, but which I have to think is healthier overall.
I tried to stress in both documents that, in this situation, breaking down is normal. Lower productivity is normal. Grief, exhaustion, short tempers, snapping at friends, regretting it, they’re all normal. We have to plan for that, expect it, brace for it, recognize that in a team or in a household these months are going to be everybody taking turns having small breakdowns – if we prepare for that we can help each other prevent the *bigger* breakdowns that are the real problem. Voices inside will tell us that the days we wake up in the morning and sit down to work and just… can’t… deal, are bad, our fault, our weakness, failure, but all the neuroscience we have says it’s not our fault, it’s natural, it’s what brains do pushed past their limit, and our brains are past their limit. So on the mornings when you sit down to work and just can’t deal, and the self-doubt voice inside looms up to say weak! failure! push back. That voice is common too. I hear it. I still hear it after years of chronic pain and every saying that the pain is real, that I should take it easy, and all my friends being supportive, and my family, but something in our culture still makes us blame ourselves inside, weak! failure! So if you hear that voice on mornings when you just can’t deal, try to summon up another voice to shout back at it: everyone on Earth is breaking down. Today my job is not this task–today my job is to take care of myself, and protect the work I’ll be able to get done tomorrow.
I've got a lot to say on this, and hopefully I'll have the mental space to digest these articles in the next day or two, but I just want to put it out there that anyone who's struggling with all the weirdness and can't get people, especially medical providers to believe you about how bad it is: I believe you.
You're not alone, it's a sucky road, but you're not on it by yourself.
posted by Gygesringtone at 11:18 AM on July 6, 2022 [18 favorites]
You're not alone, it's a sucky road, but you're not on it by yourself.
posted by Gygesringtone at 11:18 AM on July 6, 2022 [18 favorites]
I was Vaccinated and caught Covid twice. I have determined, with Google-Fu, that I have long haul symptoms. I have good days and bad days. I am an older person, and was one of those folks that worked my ass off. I am a Help Desk guy, and have been in the career for almost 40 years. I've been everything in the field. Up and down the career path from L Zero all the way to Project Manager. I am at that stage of my career where I have stopped playing Company politics, and career climbing, and just wanted to maintain employment until I eventually retire. Having said all this.. I keep my head down and make myself valuable to my Company to keep the $$$ coming in. I have reached a stasis point to where I know the required effort to earn my pay vs my company being acceptable to my work output to earn my pay. Then Covid happened to me. I burned all my comp time, vacation time, and even my companies grace time. I finally had to use FML Time and ended up taking the full 12 weeks. I have days where I can't even barely keep my eyes open, I am so tired. My body hurts, my joints ache, I lost my sense of smell, and it affected my taste, and I had this whole food texture thing happen to me. Add to this anxiety episodes, and then Insomnia. I have an Oxygen machine I use. The brain fog is the worst. My, usually, good brain has been replaced by this fogged up mess of a brain. I've been reduced to a gibbering idiot that watches youtube when I am conscious, because my attention span is for shit now. I told my GP and He thinks it is all hokum, and tried to tell me I am depressed as well. As I have said, I am older. I have all the morbidities. I am old, fat, have the Diabeetus, and have CHF. Congestive heart failure. Corona / Covid has messed me up worse than those morbidities ever did. I managed to keep them under control for years, until covid hit me. Now I am just ready for everything to be over. If this is my life now; I am done with it. I have no fear of mortality. I am a realist when it comes to that. I am just so damn tired of being sick and tired. Sorry for rambling there folks. Luckily for me; I worked so hard at my Company that they are completely cool and understanding, and play ball with me. I now work from home full time, and they are kinda liberal with their understanding of my condition. I just keep plugging away until I can't anymore. Covid has made me so apathetic about life in general. Lord knows what those poor millennials are going through.
posted by CygnusXII at 11:33 AM on July 6, 2022 [37 favorites]
posted by CygnusXII at 11:33 AM on July 6, 2022 [37 favorites]
Could viral persistence explain Long COVID?
I offer this as a glimmer of hope that Long COVID may soon be treatable.
posted by Artful Codger at 12:30 PM on July 6, 2022 [3 favorites]
I offer this as a glimmer of hope that Long COVID may soon be treatable.
posted by Artful Codger at 12:30 PM on July 6, 2022 [3 favorites]
I've got a compromised immune system and had covid in January, despite being fully vaccinated and boosted. I had mild flu-like symptoms for two weeks, and then had to file FMLA and go on short-term disability for about three and a half months.
I was luckily able to return to work mid-May, but that last half a month of recovery time was critical because at the three month mark my employer killed my health insurance: no more physical therapy, no starting occupational therapy, I had to pay out of pocket for my pain care and for my meds.
I'm back at work now, but I'm still really tired, I have hard days, my capacity is lower, and what I can do outside work is definitely diminished.
"Just rest" is great advice and I wish I could follow it more, but it's just not realistic for Americans or anyone else who doesn't have a real safety net, and I say this as someone who had short-term disability insurance - so many of us don't even have that.
posted by bile and syntax at 2:18 PM on July 6, 2022 [13 favorites]
I was luckily able to return to work mid-May, but that last half a month of recovery time was critical because at the three month mark my employer killed my health insurance: no more physical therapy, no starting occupational therapy, I had to pay out of pocket for my pain care and for my meds.
I'm back at work now, but I'm still really tired, I have hard days, my capacity is lower, and what I can do outside work is definitely diminished.
"Just rest" is great advice and I wish I could follow it more, but it's just not realistic for Americans or anyone else who doesn't have a real safety net, and I say this as someone who had short-term disability insurance - so many of us don't even have that.
posted by bile and syntax at 2:18 PM on July 6, 2022 [13 favorites]
I was reading what to do when your body forgets to be well to my wife while she prepared dinner, and then I got to this part, the last sentence and I just broke down crying for a long time and she hugged me. I hadn't really sobbed in her arms for a long time. It was nice to get it out that I was scared and I kept it inside a lot to not burden her and I think that made me even more irritable and in pain... oh, the paragraph, my bad...
"One evening I came down to dinner. It must have been mid-week as it was just me and my parents at the wooden table in the farmhouse they’d moved to after Dad’s hospital was closed. I said I knew they thought there was something wrong that I wasn’t telling them. I knew they wondered if I was pregnant or on drugs or if something awful had happened to me. I cried and said nothing had happened, nothing was wrong, I just couldn’t walk very far."
Then we went for a walk because I asked and a few blocks away I pushed slightly past where I started to get tired then asked if we could go home instead of continuing on to the park. When I say get tired, it's the click somewhere that happens where I know after a few months that if I keep going I'll have to be in bed and taking into account the walk back.
posted by OnTheLastCastle at 6:24 PM on July 6, 2022 [10 favorites]
"One evening I came down to dinner. It must have been mid-week as it was just me and my parents at the wooden table in the farmhouse they’d moved to after Dad’s hospital was closed. I said I knew they thought there was something wrong that I wasn’t telling them. I knew they wondered if I was pregnant or on drugs or if something awful had happened to me. I cried and said nothing had happened, nothing was wrong, I just couldn’t walk very far."
Then we went for a walk because I asked and a few blocks away I pushed slightly past where I started to get tired then asked if we could go home instead of continuing on to the park. When I say get tired, it's the click somewhere that happens where I know after a few months that if I keep going I'll have to be in bed and taking into account the walk back.
posted by OnTheLastCastle at 6:24 PM on July 6, 2022 [10 favorites]
🫂🫂🫂, everyone.
posted by erattacorrige at 1:33 AM on July 7, 2022 [2 favorites]
posted by erattacorrige at 1:33 AM on July 7, 2022 [2 favorites]
https://www.wired.com/story/the-secrets-of-covid-brain-fog-are-starting-to-lift/amp
Researchers who had looked at mouse models for chemo "brain fog", used the same approach with mice with modified, covid susceptible trachea and lungs, and observed similar neuron population changes, inflammation, and mechanisms.
posted by sebastienbailard at 5:55 AM on July 7, 2022 [3 favorites]
Researchers who had looked at mouse models for chemo "brain fog", used the same approach with mice with modified, covid susceptible trachea and lungs, and observed similar neuron population changes, inflammation, and mechanisms.
posted by sebastienbailard at 5:55 AM on July 7, 2022 [3 favorites]
I got COVID in March (vaccinated, +1 booster) and while I feel like I got off relatively easy (asymptomatic by Day 4, rapid test negative by Day 9) and there are many days when I feel like that's all behind me, there's still this invisible wall that I'm hitting when I do any kind of exercise. Last year, I had a regular 5k run that I would do on Tuesdays, Thursdays and Saturdays. But the beginning of this year was a bit of a lost quarter fitness-wise as I got hit with gout over the holidays, then frostbite on a winter camping trip, then COVID in March.
I gave myself a month after COVID before resuming exercise in mid April. I braced myself for essentially starting over, and committed to doing a Couch-to-5k from scratch. I thought that was being kind to myself.
It sucked even harder than the first time that I did this. Lungs just don't have the endurance that they used to, and they have not been ramping up the same way that they did when I started a Couch to 5k two years ago. Now I've been hitting a wall at Week 6 where I can't push pass 3k without my lungs convulsing. I know that this is a sign to rest and let the body heal, but the absence of information makes it hard to know how much resting is enough, and when am I just holding myself back.
This is all to say also to folks who don't think they have it because they don't have the brain fog or the flareups, but still find routine exertion hard, that you probably have it too, and you're not over it either.
posted by bl1nk at 7:23 AM on July 7, 2022 [3 favorites]
I gave myself a month after COVID before resuming exercise in mid April. I braced myself for essentially starting over, and committed to doing a Couch-to-5k from scratch. I thought that was being kind to myself.
It sucked even harder than the first time that I did this. Lungs just don't have the endurance that they used to, and they have not been ramping up the same way that they did when I started a Couch to 5k two years ago. Now I've been hitting a wall at Week 6 where I can't push pass 3k without my lungs convulsing. I know that this is a sign to rest and let the body heal, but the absence of information makes it hard to know how much resting is enough, and when am I just holding myself back.
This is all to say also to folks who don't think they have it because they don't have the brain fog or the flareups, but still find routine exertion hard, that you probably have it too, and you're not over it either.
posted by bl1nk at 7:23 AM on July 7, 2022 [3 favorites]
I have so much to say about this but I'm so fucking tired all the time.
It's likely I've had it three different times, all of them before vaccines were widely available.
The first possible and probable time was very, very early in the pandemic in late December 2019 before we even had tests and I got really sick. I live in Washington State where the US outbreak mostly started and had been exposed to someone who had traveled to China just before visiting our house for an all night house party.
The second time was shortly after that in April 2020 when it was then officially a declared pandemic and people were freaking the fuck out, especially around here in WA state.
During that illness and because of someone older in their 70s in the household and how little we knew about it, I ended up quarantining outside and camping in the woods on the property far away from the main house for 15 days in relatively cold weather and it may have been the sickest I've ever been. I had to dig a latrine and shit in the woods the whole time. I cooked on my camp stove the entire time. The whole experience was really rough, but thankfully I have a ton of camping and backpacking experience that probably helped make it a lot more comfortable and survivable than it would have been for most people. I mainly slept a whole lot.
The likely third time was summer of 2021 when I was working in my friends bar and restaurant cooking and washing dishes in the peak of the pandemic. Our local town and restaurants were more open while other places in the state were under full lock down, which meant we had tons of people visiting from out of town because we were open and... Which, yeah, ugh, gross.
Today I basically have most of the known symptoms of long covid syndrome.
I still deal with major issues with taste and smell and have had the weird tell-tale metallic taste.
I've been dealing with brain fog that's so bad that some days I can barely think. I've done some alarmingly weird things like trying to put down a coffee cup or dish and instead just leaving it in mid air and dropping it on the ground. I feel like I'm half as smart as I used to be before the pandemic and it's fucking terrifying. There's a reason why I have been posting here a lot less and why my thoughts or words seem more jumbled.
I have had fatigue that's so acute and severe there have been some weeks where I've slept 20+ hours a day for 3-4 days in a row. I also have had major sleep disturbances where I can't sleep at all for 24-48 hours.
I've had bouts of vertigo so bad I can barely stand up or walk.
I've tried pushing through fatigue and trying to get exercise by biking and walking and efforts that used to leave me refreshed and charged up can wreck me for 3+ days after. To be honest I can barely walk and stay standing for very long because it just hurts too much. Biking is different and seems to rely on muscle memory and is lower impact because I've been bicycling for so long it's practically more comfortable to ride my bike than sit on a couch, but it's still way more effort than it should be, even with an ebike.
Another bizarre symptom is that for the past 12-14 months I've been having weird flashes in my eyes and vision where it's like I pressed on my closed eyelids to initiate phosphenes. They happen randomly, aren't based on eye movement, and sometimes they're so bad I can't really see well or clearly or they'll even wake me up, like someone fired off a camera flash at my face while I had my eyes closed or I was asleep.
Another symptom is full on body fatigue and pain. On a pain scale of 1-10 some days I'm hovering at a 3-5 just sitting in a chair or laying down. To calibrate that personal pain scale, for me something like a severely impacted, infected tooth with a fever is barely a 6. I've broken almost all of my toes and those were barely a 3-5. My collapsed lung ten years ago was like a 7-8. Shoot, back in my goth weirdo days doing my own body piercings with a dull safety pin was barely a 4-5. An 8-10 for me would likely be in the realm of a compound femur fracture or a heart attack or getting thrown into an industrial chipper.
I generally take pain well, so having chronic ambient pain of a 3-5 is a whole lot. Just a couple of days ago I slept really badly and weirdly and my hips and most of my joints were hitting spikes of 5-6 or more for no reason at all.
And here I am hitting a mental brain fog wall just trying to talk about it.
As for treatment and figuring this out it's been so bad that I qualified for a care coordinator and medical transportation assistance to help me fight through the brain fog and keep my appointments.
I've had a CT scan and I don't have any tumors or brain bleeding. I've had my eyes checked out and I don't have any problems with my retinas or eye problems beyond my usual astigmatism and myopia. I'm on deck for a sleep study but I already know I have apnea and need a CPAP.
Next up on deck is seeing a neurologist after jumping through those hoops and process of elimination.
This is all really frustrating because we don't really know enough about it yet, I live in a small town with relatively limited (if above par) medical options.
I've also been asked multiple times "Are you sure it's not depression?" and I can say emphatically no, no it's not. I'm still dealing with depression but it is definitely its own thing with its own symptoms on top of long covid symptoms.
Even when my depression has been at its absolute worst it was never this bad or this physical or debilitating, and I have a really severe and acute baseline to compare it to when I was so depressed I was flirting with psychosis and total breakdown.
The difference between acute/chronic depression and whatever this long covid thing is is even more stark considering how lucky I've been to live in a good place with good people and it's possibly one of the warmest, safest and best places I've ever lived in my remarkably challenging life.
I had some thought I wanted to close with but I'm hitting my wall of brain fog and I'm losing the plot again.
Whatever this long covid stuff is it's messed up and it's not ok. It's going to have broad impacts on our society and culture and we're just seeing the tip of the iceberg, here. It's probably going to have impacts for years or decades to come.
posted by loquacious at 11:43 AM on July 7, 2022 [15 favorites]
It's likely I've had it three different times, all of them before vaccines were widely available.
The first possible and probable time was very, very early in the pandemic in late December 2019 before we even had tests and I got really sick. I live in Washington State where the US outbreak mostly started and had been exposed to someone who had traveled to China just before visiting our house for an all night house party.
The second time was shortly after that in April 2020 when it was then officially a declared pandemic and people were freaking the fuck out, especially around here in WA state.
During that illness and because of someone older in their 70s in the household and how little we knew about it, I ended up quarantining outside and camping in the woods on the property far away from the main house for 15 days in relatively cold weather and it may have been the sickest I've ever been. I had to dig a latrine and shit in the woods the whole time. I cooked on my camp stove the entire time. The whole experience was really rough, but thankfully I have a ton of camping and backpacking experience that probably helped make it a lot more comfortable and survivable than it would have been for most people. I mainly slept a whole lot.
The likely third time was summer of 2021 when I was working in my friends bar and restaurant cooking and washing dishes in the peak of the pandemic. Our local town and restaurants were more open while other places in the state were under full lock down, which meant we had tons of people visiting from out of town because we were open and... Which, yeah, ugh, gross.
Today I basically have most of the known symptoms of long covid syndrome.
I still deal with major issues with taste and smell and have had the weird tell-tale metallic taste.
I've been dealing with brain fog that's so bad that some days I can barely think. I've done some alarmingly weird things like trying to put down a coffee cup or dish and instead just leaving it in mid air and dropping it on the ground. I feel like I'm half as smart as I used to be before the pandemic and it's fucking terrifying. There's a reason why I have been posting here a lot less and why my thoughts or words seem more jumbled.
I have had fatigue that's so acute and severe there have been some weeks where I've slept 20+ hours a day for 3-4 days in a row. I also have had major sleep disturbances where I can't sleep at all for 24-48 hours.
I've had bouts of vertigo so bad I can barely stand up or walk.
I've tried pushing through fatigue and trying to get exercise by biking and walking and efforts that used to leave me refreshed and charged up can wreck me for 3+ days after. To be honest I can barely walk and stay standing for very long because it just hurts too much. Biking is different and seems to rely on muscle memory and is lower impact because I've been bicycling for so long it's practically more comfortable to ride my bike than sit on a couch, but it's still way more effort than it should be, even with an ebike.
Another bizarre symptom is that for the past 12-14 months I've been having weird flashes in my eyes and vision where it's like I pressed on my closed eyelids to initiate phosphenes. They happen randomly, aren't based on eye movement, and sometimes they're so bad I can't really see well or clearly or they'll even wake me up, like someone fired off a camera flash at my face while I had my eyes closed or I was asleep.
Another symptom is full on body fatigue and pain. On a pain scale of 1-10 some days I'm hovering at a 3-5 just sitting in a chair or laying down. To calibrate that personal pain scale, for me something like a severely impacted, infected tooth with a fever is barely a 6. I've broken almost all of my toes and those were barely a 3-5. My collapsed lung ten years ago was like a 7-8. Shoot, back in my goth weirdo days doing my own body piercings with a dull safety pin was barely a 4-5. An 8-10 for me would likely be in the realm of a compound femur fracture or a heart attack or getting thrown into an industrial chipper.
I generally take pain well, so having chronic ambient pain of a 3-5 is a whole lot. Just a couple of days ago I slept really badly and weirdly and my hips and most of my joints were hitting spikes of 5-6 or more for no reason at all.
And here I am hitting a mental brain fog wall just trying to talk about it.
As for treatment and figuring this out it's been so bad that I qualified for a care coordinator and medical transportation assistance to help me fight through the brain fog and keep my appointments.
I've had a CT scan and I don't have any tumors or brain bleeding. I've had my eyes checked out and I don't have any problems with my retinas or eye problems beyond my usual astigmatism and myopia. I'm on deck for a sleep study but I already know I have apnea and need a CPAP.
Next up on deck is seeing a neurologist after jumping through those hoops and process of elimination.
This is all really frustrating because we don't really know enough about it yet, I live in a small town with relatively limited (if above par) medical options.
I've also been asked multiple times "Are you sure it's not depression?" and I can say emphatically no, no it's not. I'm still dealing with depression but it is definitely its own thing with its own symptoms on top of long covid symptoms.
Even when my depression has been at its absolute worst it was never this bad or this physical or debilitating, and I have a really severe and acute baseline to compare it to when I was so depressed I was flirting with psychosis and total breakdown.
The difference between acute/chronic depression and whatever this long covid thing is is even more stark considering how lucky I've been to live in a good place with good people and it's possibly one of the warmest, safest and best places I've ever lived in my remarkably challenging life.
I had some thought I wanted to close with but I'm hitting my wall of brain fog and I'm losing the plot again.
Whatever this long covid stuff is it's messed up and it's not ok. It's going to have broad impacts on our society and culture and we're just seeing the tip of the iceberg, here. It's probably going to have impacts for years or decades to come.
posted by loquacious at 11:43 AM on July 7, 2022 [15 favorites]
I'm trying to organize my thoughts into something coherent here, apologize if it ends up being a bit of a ramble:
First, though I'd like to say, however you're approaching this thread is valid. If you need a space to be sad\angry\etc. I bet that every one of us Long Haulers has been there. If you need a place to be hopeful\celebrate your progress, I'm proof that things can get better. I'm doing things now that would have knocked me out for a week 18 months ago. Either way, I'm hoping we can all come together and reaffirm each other.
So I'm one of the first wave of Long Haul COVID folks in the US. My wife says we realized that I had long COVID right when people were first talking about it like it was a thing. I really don't have any sort of memory of 2020-21, so a lot of the early stuff is second hand. There are 1 1/2 - 2 years of my life that I don't know anything about. And coming to and finding out that my normal expectations of what I can do are just wrong was REALLY tough. That has been a giant thing to work through emotionally, and I'm still in the process of grieving those lost years, and my lost health. And like, that's o.k., as a culture we're very much taught to power through bad times, and think positive, and all sorts of other shit like that, but feeling bad when a bad thing happens to you is a healthy response.
I spent a fair bit of time trying to get any sort of referral through Kaiser. We've since switched insurance and things went much much more smoothly. I've been lucky enough to have access to a clinic specializing in COVID recovery and that has made a HUGE difference. I've broken down crying several times their office just because it was so reaffirming to hear that, no this is a real thing. Since I know people aren't all that lucky, I just want to re-iterate what my Doctor has repeatedly told me: The way you heal is rest. The old "you have to push yourself to get in shape" attitude is actively hurtful here.
So when there's a question about Long Haul COVID, there's a bit I often do. It's about mitochondria damage that can happen with COVID. Basically it goes like this: Your mitochondria are the bits of your cells that, among other things, turn oxygen into energy for your cell to use. And right now they're broken and take a long time to heal up. If you stress them too much then they'll just get more damaged and so your recovery's going to take a big step back. And I know that there are all sorts of people who love all sorts of activities that they just can't handle right now. And that's a huge blow. But, no matter how much you love running\biking\soccer\whatever, you wouldn't do it with a broken leg, it'd just make the break worse. Same thing here, it's just that the cells in your body don't have a way to send out pain signals when you're blowing out their little batteries.
That's one of the really big problems: our bodies are absolutely crap at signaling when we're reaching that too much point. I never know where the line is until I've crossed it. I think the what might have been one of the hardest things for me to adjust too was that I couldn't trust the signals my body was sending me anymore. Like, not only could I not trust it about how much energy I actually had, sometimes I'll be sitting there, and my body just decides it's time to freak the fuck out, and for no reason my heart will start pounding, my emotional responses ramp up, and my stupid brain starts looking for something to be upset about. Other times, my nose is CONVINCED there's rotting meat/poop/whatever somewhere in the room. And I'm officially a weepy mess at least once a week for things that aren't actually that emotional for me. So from the inside, it's really hard to believe that I can so quickly go from functioning to being unable to watch a movie because that requires too much thinkyness.
And then from the outside I think it's hard for people to understand is the difference between "being tired" and what folks with Long COVID are going through. Like, if you could pair lack of energy with food like you can wine, I'd be a sommelier. There's sleepy. There's worn out: which is what normal folks get at then end of the long day. There's fatigue: a constant feeling of being worn out. There's done: where I don't really have a choice, I'm out of energy to do any sort of physical task no matter how I feel about the matter, my body is going to be lying down somewhere for an undetermined amount of time. And there's DONE (and yes, you can here the caps, bold, and Italics when I say it): which is when I'm so out of energy that my conscious mind just... goes away for awhile and I sort of stop existing outside of the functions that keep my lump of meat bits working. It's not the same thing as falling asleep, it's just that thoughts take more chemical energy than I have to spare at the moment. Luckily most of my friends\family believe me there's a difference even if they haven't lived that difference.
Anyway, all of that was a setup to say that I absolutely think that rest and acceptance and planning around our limitations is vitally important for people with Long Haul COVID. The thing is that society is just not set up to give us that space\time to heal. Society isn't even set up to allow us to think that we need and deserve that space. That's why I think articles like the ones here are so important, because we need not only need safety nets that might not be there, we need to convince ourselves that we are worthy of saving. The truth of the matter is: I'm always telling people this stuff because it's what I need to hear. I repeat myself so much because I'm trying to teach myself a hard lesson.
So:
This is a real thing.
This isn't something we can just power through.
This is not depression.
This isn't because we're out of shape or lazy.
We deserved to be believed.
We deserve to let ourselves heal.
We deserve patience from ourselves and others.
We deserve the space to greave everything we've lost.
We deserve to celebrate the victories, even if they're small.
We deserve hope.
posted by Gygesringtone at 4:30 PM on July 7, 2022 [16 favorites]
First, though I'd like to say, however you're approaching this thread is valid. If you need a space to be sad\angry\etc. I bet that every one of us Long Haulers has been there. If you need a place to be hopeful\celebrate your progress, I'm proof that things can get better. I'm doing things now that would have knocked me out for a week 18 months ago. Either way, I'm hoping we can all come together and reaffirm each other.
So I'm one of the first wave of Long Haul COVID folks in the US. My wife says we realized that I had long COVID right when people were first talking about it like it was a thing. I really don't have any sort of memory of 2020-21, so a lot of the early stuff is second hand. There are 1 1/2 - 2 years of my life that I don't know anything about. And coming to and finding out that my normal expectations of what I can do are just wrong was REALLY tough. That has been a giant thing to work through emotionally, and I'm still in the process of grieving those lost years, and my lost health. And like, that's o.k., as a culture we're very much taught to power through bad times, and think positive, and all sorts of other shit like that, but feeling bad when a bad thing happens to you is a healthy response.
I spent a fair bit of time trying to get any sort of referral through Kaiser. We've since switched insurance and things went much much more smoothly. I've been lucky enough to have access to a clinic specializing in COVID recovery and that has made a HUGE difference. I've broken down crying several times their office just because it was so reaffirming to hear that, no this is a real thing. Since I know people aren't all that lucky, I just want to re-iterate what my Doctor has repeatedly told me: The way you heal is rest. The old "you have to push yourself to get in shape" attitude is actively hurtful here.
So when there's a question about Long Haul COVID, there's a bit I often do. It's about mitochondria damage that can happen with COVID. Basically it goes like this: Your mitochondria are the bits of your cells that, among other things, turn oxygen into energy for your cell to use. And right now they're broken and take a long time to heal up. If you stress them too much then they'll just get more damaged and so your recovery's going to take a big step back. And I know that there are all sorts of people who love all sorts of activities that they just can't handle right now. And that's a huge blow. But, no matter how much you love running\biking\soccer\whatever, you wouldn't do it with a broken leg, it'd just make the break worse. Same thing here, it's just that the cells in your body don't have a way to send out pain signals when you're blowing out their little batteries.
That's one of the really big problems: our bodies are absolutely crap at signaling when we're reaching that too much point. I never know where the line is until I've crossed it. I think the what might have been one of the hardest things for me to adjust too was that I couldn't trust the signals my body was sending me anymore. Like, not only could I not trust it about how much energy I actually had, sometimes I'll be sitting there, and my body just decides it's time to freak the fuck out, and for no reason my heart will start pounding, my emotional responses ramp up, and my stupid brain starts looking for something to be upset about. Other times, my nose is CONVINCED there's rotting meat/poop/whatever somewhere in the room. And I'm officially a weepy mess at least once a week for things that aren't actually that emotional for me. So from the inside, it's really hard to believe that I can so quickly go from functioning to being unable to watch a movie because that requires too much thinkyness.
And then from the outside I think it's hard for people to understand is the difference between "being tired" and what folks with Long COVID are going through. Like, if you could pair lack of energy with food like you can wine, I'd be a sommelier. There's sleepy. There's worn out: which is what normal folks get at then end of the long day. There's fatigue: a constant feeling of being worn out. There's done: where I don't really have a choice, I'm out of energy to do any sort of physical task no matter how I feel about the matter, my body is going to be lying down somewhere for an undetermined amount of time. And there's DONE (and yes, you can here the caps, bold, and Italics when I say it): which is when I'm so out of energy that my conscious mind just... goes away for awhile and I sort of stop existing outside of the functions that keep my lump of meat bits working. It's not the same thing as falling asleep, it's just that thoughts take more chemical energy than I have to spare at the moment. Luckily most of my friends\family believe me there's a difference even if they haven't lived that difference.
Anyway, all of that was a setup to say that I absolutely think that rest and acceptance and planning around our limitations is vitally important for people with Long Haul COVID. The thing is that society is just not set up to give us that space\time to heal. Society isn't even set up to allow us to think that we need and deserve that space. That's why I think articles like the ones here are so important, because we need not only need safety nets that might not be there, we need to convince ourselves that we are worthy of saving. The truth of the matter is: I'm always telling people this stuff because it's what I need to hear. I repeat myself so much because I'm trying to teach myself a hard lesson.
So:
This is a real thing.
This isn't something we can just power through.
This is not depression.
This isn't because we're out of shape or lazy.
We deserved to be believed.
We deserve to let ourselves heal.
We deserve patience from ourselves and others.
We deserve the space to greave everything we've lost.
We deserve to celebrate the victories, even if they're small.
We deserve hope.
posted by Gygesringtone at 4:30 PM on July 7, 2022 [16 favorites]
Reading Farrell's two articles was a points like reading my own biography.
I know it is kind of cruel but a mass epidemic of Long-covid gives me hope that cures may be on the way for CFS/ME. It's been a very long quarter century.
posted by srboisvert at 3:15 AM on July 10, 2022 [4 favorites]
I know it is kind of cruel but a mass epidemic of Long-covid gives me hope that cures may be on the way for CFS/ME. It's been a very long quarter century.
posted by srboisvert at 3:15 AM on July 10, 2022 [4 favorites]
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This article saved my life for now. But doctors seem to mostly just shrug and say depression even when you say you know what depression is like intimately and this isn’t it.
It’s interesting to hear the second article talk about sitting down to work and you just… can’t. I can’t anymore. Most mornings. It lasts until the afternoon. Sometimes it just keeps going. I have ADHD and it’s like somehow it’s been fully unlocked where executive dysfunction was a joke before but trapping you in a place between wanting to do and unable to do for eternity is actually possible.
My brain is in agony. Usually it’s tired because it wouldn’t let me sleep, but it won’t actually rest or do anything. It’s an endlessly somehow speeding up patter of rapid thoughts.
The only thing that seems to maybe help sometimes is getting out of my house for a walk or activity. Odds are very high that will result in my being bedridden after. If this is my new normal for the rest of my life, I don’t want it.
Fuck this shit.
posted by OnTheLastCastle at 10:53 AM on July 6, 2022 [28 favorites]