Long Covid - Tumblr Posts
People like to pretend I will "get better" so they do not have to think about the deadly lie they are living. Abandoning disabled and high-risk people to preventable death is eugenics.
To clarify, this is NOT just an American issue -- think of the "pan" in pandemic.
The MSKCC Library
The People's CDC (weekly weather reports on COVID in the U.S.)
Image IDs available in Alt Text and written out below:
Image ID begins. A black and white cartoon comic titled Pandemic Year 4. This is panel 1. A boy with short hair — Joey, the author of the comic — is holding a Christmas wreath and handing it to his boyfriend, a boy with long hair and a beard, who is standing in a window while decorating. The text reads: This year, my boyfriend and I got fresh pine wreaths from the farmer’s market — our fist big Christmas decorations together!
Panel 2. A hand holds pine needles. Cartoon stink clouds radiate off of the pine needles. The text reads: I break pine needles between my fingers and it smells hideous. Pain shoots through my head.
Panel 3. Joey stands in front of a table on which there are various foods. He looks disgusted and is covering his nose and mouth with his hands. The text reads: This is how I have lived since my February 2020 COVID infection. COVID caused brain and nerve damage, making everything smell and taste like rot. The condition is called parosmia, and it has no cure. Eating is a nightmare.
Panel 4. Joey’s boyfriend, a taller boy with long hair and a beard, puts his hand on Joey’s shoulder. They are shown from behind and are both wearing backpacks and winter coats. The text reads: Last week, my boyfriend walked me home from work midday after I had a near-fainting episode. I wear a heart monitor full-time. Doctors say I’m “too young”.
Panel 5. Joey is shown from behind, sitting sadly and gazing out a window. The text reads: I’ve literally been isolated from the rest of the world for four years. One COVID infection destroyed my life, and I can’t risk another. How can I get you to understand? After becoming disabled by COVID at 19 years old, I have been completely shut off from the outside world.
Panel 6. Joey stands in between two maskless and anonymous figures. Joey looks uncomfortable and is crossing his arms and gazing at them. He is wearing a respirator mask and goggles. The figure on the right is holding a bag labeled “food Joey can’t eat”. The text reads: “Friends” and family who have seen the depth of my suffering for four years have stopped masking and can’t be bothered to care. Family Christmas meant that I had to reiterate daily that I would not and physically could not eat at restaurants.
Panel 7. A drawing of an open laptop, next to which lays an N95 mask. On the laptop, a headline from the Washington Post is displayed. The headline reads: Covid kills nearly 10,000 in a month as holidays fuel spread, WHO says. The comic text reads: This winter has been the 2nd highest peak of the pandemic, with at least 10,000 Americans dying of COVID in December. Playing pretend at “normalcy” is profoundly violent and deadly. Under the comic frame, a citation reads: The Washington Post, January 11, 2024. This is an undercount, as there is no more COVID tracking in the U.S.
Panel 8. A drawing of Joey gesturing at an educational chalk board with a pointer. He is wearing a respirator mask, goggles, and a sweater vest. The text reads: COVID is a virus that causes long-term damage to your organs and nervous system. It’s also a Biosafety Level 3 pathogen, like tuberculosis, meaning that is can be lethal upon inhalation and requires special and serious PPE in Laboratories. The Memorial Sloan Kettering Cancer Center has a digital library of research on COVID impacts. https://libguides.mskcc.org/CovidImpacts/Home
Panel 9. An anonymous figure behind an oration desk is trying to cover a pile of bones behind them. On the pile of bones is a flag that says: Just keep buying and working! The text reads: You are being led to enact violence on your community members by a government who is sacrificing you on the altar of capital. You should be terrified.
Panel 10. A drawing of Joey’s head from the side. he is wearing a respirator mask. The text reads: There is no neutrality in a mass-death and mass-disabling pandemic. Wear a mask or forever be complicit. The comic is dated February 3, 2024. Image ID ends.
Fuck I have Covid again. Why the hell do people go out when they’re sick??? I’m 98% sure I got it from a girl in one of my classes who wouldn’t stop coughing. Sure it’s not her fault that the class isn’t recorded so missing lecture means missing material but still why is it so fucking normalized to go out when you’re sick??? I’m honestly really scared that this will end up like the last time I had it, in bed with a high fever and racing heart 24/7 with muscle weakness and extreme fatigue. I already have long Covid from that time what the fuck is this time going to do to me??
I’m learning this over time. The queer experience is dominant society punishing people like us the burden for simply existing. Do these people ever think that anybody asks to be born? Are we so abhorrent that we’re destined to die, yet we are needed to be alive to be their demonized scapegoat too? That’s the inconsistency of hate: it is learned, perpetuated, and it is illogical and incoherent by its very nature.
Like American comedian, George Carlin, said once in his “Jammin’ from New York” 1992 special, spoke: “If you’re pre-born, you’re fine; if you’re preschool, you’re fucked.”
We deserve better and owed better than what was going on in 1992.
Some days will be harder than others when you are sick. Don't be ashamed of asking for help, for accommodations, or canceling plans and staying in bed. Only you know what your body and mind are going through and you should listen to your needs instead of sacrificing them to make others feel more comfortable. Your illness doesn't make you a burden and you should stay away from people who treat like one. You should be loved for who you are, accepted completely as the complex human being you are. You are more than your illness, but remember to validate it and set boundaries with yourself and others regarding what your body needs so you can be healthy on the long run.
It’s really hard living with disability and surviving the cruel regime of the United States. I’m tired of resting. I’m tired of being an ambulatory cane user who’s looking into wheelchairs just to reclaim a better fidelity for mobility. I’m tired of having to grieve alone what COVID-19 took from me for three years now.
I was scared. I was alone in isolation. There were no ambulances or hospital beds. I reached a critical point of multi day high fever and drowning in my lung fluid that I was ready to die. I reached a point where my body gave it all and the lights faded out. I was scared to survive. I still feel this.
I hope these days spent resting will mean something, for I am not sure or optimistic. For now, I am scared and I am tired.
I am not broken. I have been wounded.
I am not damaged. I have been hurt.
I am not useless. I am making the best of my limited capacity.
I am not lazy. I need rest to heal.
I am not unreliable. I live an unpredictable life.
I am not irresponsible. I am relearning how to function.
"Do you have to make being queer your whole personality?"
Yes. It angers you. It causes you discomfort... it's payback for the discomfort you've caused me. Its reversing my trauma into my queerness and superblasting it into you just because it pisses you off!
This one was just miraculous: two large slices of pure perfection. Lifting the slice with a crust so softly thin, that the cheese was just oozing out from underneath itself: the triangular platonic ideal for a shapely shape of such convected goodness. It slid down my thrussy until I bravely swallowed into what was once the achingly emptied pits of my belly.
I feel like I might have COVID LOL
wait if transmisogyny is not your problem how do you also list trans rights as a big world issue you should be concerned about. how is covid not a world issue. what
have you seen the updated CDC guidelines? it's basically the flu. not a big deal.
I got my ten year tetanus booster two days ago and my arm still ACHES like how did y'all forge through the covid shots??? I'm rolling around feeling awful cause my arm feels awful and all of my friends are telling me "oh that's nothing I felt like I got fully hit by a train for three days after I got the covid shot" like wtf o.O
so... my dear dear uncle had covid during January 21... he died on May 22 because of a stroke... long covid is real and mortal... please stay healthy...
sometimes I miss march 2020 bc I feel like that was the last time everyone was equally afraid. it felt so fast that people split into camps like “covid isn’t even real” and “covid is real but The Economy” and somehow people who are serious about public health and masking ended up at the bottom of the heap being treated like kooks and outliers
My grandfather was up past midnight last night, crying and praying, because we finally told him I’m most likely going to be diagnosed with schizophrenia this coming week, then told him everything I’ve been going through for the last 2 years. He was asking the Lord to heal me, to show him how he can help me, and to give my mother the strength to take care of me and be my advocate.
We were hoping it would simply relate to my migraines or long-COVID. I’ve had more scans and tests done trying to find something that has developed, but everything has came back negative. My mother still thinks it could be the multitude of neurological medicines I’ve went through since the last few months of 2021. Not that we can rule that out or not. My doctor that’s part of a post-COVID network hasn’t seen these side effects or symptoms in anyone else, so they don’t think it’s COVID. Apparently I’m just reaching the age that these issues show up. They did say that it’s possible COVID sped up the timeline of the symptoms, and that’s why it’s gotten so much worse in such a small time, but can’t say for sure.
So yeah.
Long covid has derailed my life. Make no mistake: It could yours, too.
By Madeline Miller for the Washington Post, August 9th, 2023.
Audio version available in the inline link.
Madeline Miller, a novelist, is the author of “The Song of Achilles” and “Circe.”
In 2019, I was in high gear. I had two young children, a busy social life, a book tour and a novel in progress. I spent my days racing between airports, juggling to-do lists and child care. Yes, I felt tired, but I come from a family of high-energy women. I was proud to be keeping the sacred flame of Productivity burning.
Then I got covid.
I didn’t know it was covid at the time. This was early February 2020, before the government was acknowledging SARS-CoV-2’s spread in the United States.
In the weeks after infection, my body went haywire. My ears rang. My heart would start galloping at random times. I developed violent new food allergies overnight. When I walked upstairs, I gasped alarmingly.
I reached out to doctors. One told me I was “deconditioned” and needed to exercise more. But my usual jog left me doubled over, and when I tried to lift weights, I ended up in the ER with chest pains and tachycardia. My tests were normal, which alarmed me further. How could they be normal? Every morning, I woke breathless, leaden, utterly depleted.
Worst of all, I couldn’t concentrate enough to compose sentences. Writing had been my haven since I was 6. Now, it was my family’s livelihood. I kept looking through my pre-covid novel drafts, desperately trying to prod my sticky, limp brain forward. But I was too tired to answer email, let alone grapple with my book.
When people asked how I was, I gave an airy answer. Inside, I was in a cold sweat. My whole future was dropping away. Looking at old photos, I was overwhelmed with grief and bitterness. I didn’t recognize myself. On my best days, I was 30 percent of that person.
I turned to the internet and discovered others with similar experiences. In fact, my symptoms were textbook — a textbook being written in real time by “first wavers” like me, comparing notes and giving our condition a name: long covid.
In those communities, everyone had stories like mine: life-altering symptoms, demoralizing doctor visits, loss of jobs, loss of identity. The virus can produce a bewildering buffet of long-term conditions, including cognitive impairment and cardiac failure, tinnitus, loss of taste, immune dysfunction, migraines and stroke, any one of which could tank quality of life.
For me, one of the worst was post-exertional malaise (PEM), a Victorian-sounding name for a very real and debilitating condition in which exertion causes your body to crash. In my new post-covid life, exertion could include washing dishes, carrying my children, even just talking with too much animation. Whenever I exceeded my invisible allowance, I would pay for it with hours, or days, of migraines and misery.
There was no more worshiping productivity. I gave my best hours to my children, but it was crushing to realize just how few hours there were. Nothing was more painful than hearing my kids delightedly laughing and being too sick to join them.
Doctors looked at me askance. They offered me antidepressants and pointed anecdotes about their friends who’d just had covid and were running marathons again.
I didn’t say I’d love to be able to run. I didn’t say what really made me depressed was dragging myself to appointments to be patronized. I didn’t say that post-viral illness was nothing new, nor was PEM — which for decades had been documented by people with myalgic encephalomyelitis/chronic fatigue syndrome — so if they didn’t know what I was talking about, they should stop sneering and get caught up. I was too sick for that, and too worried.
I began scouring medical journals the way I used to close-read ancient Greek poetry. I burned through horrifying amounts of money on vitamins and supplements. At night, my fears chased themselves. Would I ever get relief? Would I ever finish another book? Was long covid progressive?
It was a bad moment when I realized that any answer to that last question would come from my own body. I was in the first cohort of an unwilling experiment.
When vaccines rolled out, many people rushed back to “normal.” My world, already small, constricted further.
Friends who invited me out to eat were surprised when I declined. I couldn’t risk reinfection, I said, and suggested a masked, outdoor stroll. Sure, they said, we’ll be in touch. Zoom events dried up. Masks began disappearing. I tried to warn the people I loved. Covid is airborne. Keep wearing an N95. Vaccines protect you but don’t stop transmission.
Few wanted to listen. During the omicron wave, politicians tweeted about how quickly they’d recovered. I was glad for everyone who was fine, but a nasty implication hovered over those of us who weren’t: What’s your problem?
Friends who did struggle often seemed embarrassed by their symptoms. I’m just tired. My memory’s never been good. I gave them the resources I had, but there were few to give. There is no cure for long covid. Two of my friends went on to have strokes. A third developed diabetes, a fourth dementia. One died.
I’ve watched in horror as our public institutions have turned their back on containment. The virus is still very much with us, but the Centers for Disease Control and Prevention has stopped reporting on cases. States have shut down testing. Corporations, rather than improving ventilation in their buildings, have pushed for shield laws indemnifying them against lawsuits.
Despite the crystal-clear science on the damage covid-19 does to our bodies, medical settings have dropped mask requirements, so patients now gamble their health to receive care. Those of us who are high-risk or immunocompromised, or who just don’t want to roll the dice on death and misery, have not only been left behind — we’re being actively mocked and pathologized.
I’ve personally been ridiculed, heckled and coughed on for wearing my N95. Acquaintances who were understanding in the beginning are now irritated, even offended. One demanded: How long are you going to do this? As if trying to avoid covid was an attack on her, rather than an attempt to keep myself from sliding further into an abyss that threatens to swallow my family.
The United States has always been a terrible place to be sick and disabled. Ableism is baked into our myths of bootstrapping and self-reliance, in which health is virtue and illness is degeneracy. It is long past time for a bedrock shift, for all of us.
We desperately need access to informed care, new treatments, fast-tracked research, safe spaces and disability protections. We also need a basic grasp of the facts of long covid. How it can follow anywhere from 10 to 30 percent of infections. How infections accumulate risk. How it’s not anxiety or depression, though its punishing nature can contribute to both those things. How children can get it; a recent review puts it at 12 to 16 percent of cases. How long-haulers who are reinfected usually get worse. How as many as 23 million Americans have post-covid symptoms, with that number increasing daily.
More than three years later, I still have long covid. I still give my best hours to my children, and I still wear my N95. Thanks to relentless experimentation with treatments, I can write again, but my fatigue is worse. I recognize how fortunate I am: to have a caring partner and community, health insurance, good doctors (at last), a job I can do from home, a supportive publishing team, and wonderful readers who recommend my books. I’m grateful to all those who have accepted the new me without making me beg.
Some days, long covid feels manageable. Others, it feels like a crushing mountain on my chest. I yearn for the casual spontaneity and scope of my old life. I miss the friends and family who have moved on. I grieve those lost forever.
So how long am I going to do this? Until indoor air is safe for all, until vaccines prevent transmission, until there’s a cure for long covid. Until I’m not risking my family’s future on a grocery run. Because the truth is that however immortal we feel, we are all just one infection away from a new life.
Full Transcript at the link; 3-minute listen.
Quote:
By taking biopsies from long COVID patients before and after exercising, scientists in the Netherlands constructed a startling picture of widespread abnormalities in muscle tissue that may explain this severe reaction to physical activity.
Among the most striking findings were clear signs that the cellular power plants, the mitochondria, are compromised and the tissue starved for energy.
"We saw this immediately and it's very profound," says Braeden Charlton, one of the study's authors at Vrije University in Amsterdam.
The tissue samples from long COVID patients also revealed severe muscle damage, a disturbed immune response, and a buildup of microclots.
"This is a very real disease," says Charlton. "We see this at basically every parameter that we measure."
Long Covid- Resources, and Common Co-morbid or overlapping conditions
Now, I don't have Long Covid.
What I have is Severe ME/CFS, aka Chronic Fatigue Syndrome or Myalgic Encephalomyelitis.
But Chronic fatigue as a symptom is common to a lot of conditions., including popping up as a problem for Long Covid sufferers. Some are getting diagnosed with ME or Chronic Fatigue Syndrome as part of their current condition,
but what is ME/CFS anyway?
Do you have it from your Long Covid?
ME/CFS is currently diagnosed by ruling out every other possible cause of the fatigue, as many conditions can cause fatigue on their own. Almost all your lab work will come back as Normal, sometimes with elevated white cell counts that show *something* is wrong but there is no signs of what it could be.
The main diagnostic points of ME/CFS are abnormal levels of fatigue that are not helped by rest or sleep, and something called PEM or Post Exertional Malaise. That's what they call it when your body has a bad reaction to exercise or stressors, even mental ones, by kind of... collapsing. Those of us with it call this crashing. Exertion causing the body to experience leaden exhaustion, mental fog and neurological symptoms like confusion or speech issues, and sometimes even difficulty moving- you just want and need to lie down in a dark room and just rest. It may take days, weeks, or even months to recover from a bad crash depending on how bad.
Here's where to find more info,
as I'd love to help but alas I do not have the energy to help everyone I'd like to help. If I do this as a post people can pass around, I can reach more of you.
There's a lot of helpful stuff on The Mighty, although they've been trying to turn into a social media sort of thing? Look for their articles and essays anyway.
(Now, quick aside, POTS or Orthostatic Hypotension are two other conditions that a lot of people with Long Covid are getting so it's worth looking that up too, especially if you have been having racing heart problems or fainting when you stand up far too often.)
For ME/CFS, the ME Action group is a helpful source of information. They're a nonprofit rallying for a cure and awareness. I can also give you these two links, which I have printed out as a booklet to give to my general Doctor to help them recognize if cases come to them.
What IS ME/CFS and how is it treated so far?
Often Doctors "don't believe in" ME/CFS so it's helpful to hit them with peer reviewed academia.
A lot of Doctors will try to get you to do something called Graded Exercise Therapy. You must refuse to do this. Everything we know so far and a lot of sick or belated people show that GET can permanently damage your remaining function. Here's some proof for your Doctors of why you DO NOT want to push your body harder than feels un-tiring for you now.
Many professionals have pushed for years to get the PACE trial and GET therapy removed from treatment plans as it tends to do far more harm than good:
http://sacfs.asn.au/news/2009/09/09_20_adverse_reactions_to_get.htm
Someone has even written what amounts to a How-To pamphlet for helping medical professionals begin to care for people with ME/CFS:
I kinda love it.
As for You? This tumblr user wrote a list of helpful articles for learning to live with a Chronic Condition.
You're dealing with a lot and a lot if it is grief for what you've lost and trying to work out how much is safe for you to do now without overdoing it, AND if you're like many of us, having to deal with toxic positivity and even gaslighting from people around you convinced this can't be happening or that it's not a big deal it's all in your head or that you're just anxious or scared of exercise. -.-. Which is NOT helpful at all and making life even harder.
Look up toxic positivity, and how to set polite but firm boundaries about what your body is safe to do, or can't do today, because you need to let it rest. People can be really unintentionally- or intentionally- PUSHY about trying to get you to do things you know will run you out of energy and I have had to learn to say NO very clearly.
I highly recommend finding a support group for chronic conditions, or a counselor who understand chronic illness and acceptance based therapy for traumatic circumstances.
Even my own counselor tried the "you can do anything you put your mind to!" stuff at first; until I explained to her that this is the one condition you CANNOT "fight" inspirationally. You must learn to balance with it, like walking with a book on top of your head, not fight with it- or you'll hurt yourself. Acceptance has helped me enormously to build a new, usually pretty happy life within my new energy limits. It's been hard, so hard, but life's not over for us! We just need people who will stand with us while we grieve and heal our emotions around this massive change.
I hope this helps kick-start your search for answers, and I hope one day we all have a cure.
AIDS/ACT UP posters updated for the ongoing global COVID pandemic. we must know history & be able to apply it to the current moment. queer liberation, disability justice, racial justice – these struggles cannot be separated. WearAMask #CovidIsAirborne #LongCovid 😷
Images, image descriptions, and full thread with more posters by @/_copy_of_a_copy on Twitter. The thread also includes a link to a Google Drive of PNGs/PDFs to print and wheatpaste.
The artist is only on twitter, so I am sharing this incredible thread here on Tumblr.
It took 3 days to even get a possitive tests and I feel even worse knowing who gave it to me did not intend to.
By the third day, the California fires sent smoke to choke my way. I wore a mask at work because I thought my throat was breathing in too much…
I have to call out of my work now for at least 4 days. Two are pto sick days and the last of them. I can’t afford this pain…
Someone I just spoke to at my store said “I’ve never been vaccinated and I’m fine. Never caught it”.
I’m in a store making trust with those on the right wing only to end up like this.
I’m fully vaccinated… and this is officially the moment I am at my 4th confirmation of being sick with Covid.
I just want to be a working human…
Constant reinfections of COVID have been shown to, not just cause lifelong disability; but ever deepening levels of SEVERE brain fog, memory loss -- even cognitive failure.
Increasing levels of CO2, as well, is not JUST causing climate change…breathing more of it on the regular has been shown to lower intelligence in humans.
Add to that literal generations of conservatives trying to ban books, cut science out of schools, and control what histories and truths are taught. Add the costs of education (much less living); and the absolute fuckery corporations are pulling as far as chatgpt and other "AI" (pattern recognition tbh, not truly intelligent) programs delivering demonstrably wrong answers to users, spreading misinformation at the speed of thought, and messing up search results for those who are at least TRYING to learn....and is it any wonder that this generation is having the worst time getting educated properly?
i need a business card that says “i’m not ignoring you, i’m just ridiculously exhausted and do not have the energy to hold conversations or have emotional responses at the moment” so i can hand it out as a disclaimer to all my friends.
I am being so normal about realizing how disabled I truly am (lie)