Long covid has ruined my life. I was 21 when i got ill,now i'm 23. I was a sport science major and i loved powerlifting and bodybuilding(still do). I had a mild initial case. Then i kept getting worse. I am afraid i will never live again and i'm losing my youth day by day./
I already lost almost 2 years of my life. Please let's
#researchlongcovid
&
#treatlongcovid
so I and millions of others can find ourselves again. I promise we'll pay you back. It could happen to anyone,more people will get sick and we are not prepared. Please don't leave us.
Epstein barr is a virus 90% of humans have been infected with. Many never exhibit acute symptoms or "mono". After many years it was proven to cause MS, the leading cause of neurological disability among young adults. We thought EBV was mild. After all most were asymptomatic,/
I simply can't sustain any activity for more than minutes without extreme fatigue that floors me,sometimes literally. My cognitive ability is diminished. No one knows why. There is no help. I am mostly trapped in my bed. My family is devastated. I don't know if i'll recover./
It gives as a framework of what can happen after a "mild" virus most people don't die from. Maybe instead of calling Long Covid rare/psychosomatic or rely only on vaccines which have only been established to prevent death,not LC, we should mask up and research the hell out of it/
After fasting, cold showers, using apps, slowly increasing activity, antihistamines, cutting coffee sugar and tasty food out, daily meditation, green tea, coq10, Vitamin d, L carnitine, niacin, breathing exercises and therapy I can say I'm still completely disabled.
#longcovid
Diet, Exercise & young age will NOT save you from
#LongCovid
. I am 24 years old. I have been ill with long covid since i was 21. I ate nutritiously. I lifted. Worked. I did gymnastics, swimming, track & field. Now, I would be on the street starved to death if not for my family.
because we could be looking at a new leading cause of neurological disability in Long Covid. When we have some understanding and actual treatment for the Long term effects then we can get back to some normalcy. Russian roulete with multiple guns(infections) will be catastrophic.
90% had it and the world wasnt ending. We also thought MS was psychosomatic until we saw the lesions. Turns out EBV wasn't mild, and it caused neurodegeneration in a minority(which translated in millions of people because 90% of us have it). While covid isn't EBV it is a virus/.
Anybody can get Long Covid. I will die on this hill. Vaccines don't seem to eliminate the risk and breakthrough infections are frequent. There are no treatments if you get Long Covid. This is already getting out of hand.
This is not fatigue.
I was an athlete. I've done a whole basketball practice with a fever. I've had morning classes and workouts while sleepless for 24+hrs. Nothing comes close to this. This feels like being allergic to exertion while having a brain Injury.
#LongCovid
I'm not an expert and don't pretend to be. If you are more qualified and see any flaw in my reasonining and can debunk it with data not just your opinions it would be welcome.
Almost 3 years ago at 21 years old someone sick with Covid-19 infected me. I was outdoors but went to a bathroom which was indoors. I was told by health officials I didn't need to wear a mask and that since I was young I'd be ok if infected. Now my life is ruined.
#LongCovid
Correct me if I'm wrong. It took 6 years since HIV surfaced in 1980-81 for the first drug to emerge. 10-15 years overall for good treatments. That was 30 years ago. 3.5 years of long covid and we have zero treatments and diagnostics. Yet we possess superior technology/knowledge.
Today marks two years that Long Covid disabled me. 2 years of constant suffering in my early twenties I will never get back. After my friends briefly visit me ,they leave to go out or meet their girlfriends. I reside to the darkest room in my house to recover from the visit, /
Pro Covid people don't like me. I'm a living reminder of what a mild infection can do to a young person so I'm a threat to their false sense of safety. They say we can't mask forever, while I am possibly going to be disabled forever from
#LongCovid
. That makes them feel soft.
Covid disabled me at 22 years old. For 2.5 years I haven't been able to study, do physical activity or work. Here, before long covid, in kinesiology class demonstrating an exercise. I can barely brush my teeth or shower now.
#LongCovidAwarenessDay
I feel like death but it's "just"
#longcovid
. I sit in the darkness alone too exhausted to move. I use my phone with sunglasses on for minutes at a time because my brain is wrecked and can't handle light. I can't think straight. It's been 2 years. I turn 24 in a month. No help.
Hey everyone. Your response has been huge and i'm so grateful but also sorry if i can't reply to everyone, it's just so overwhelming. Maybe consider following me so we can keep in touch and help me reach more people with my story. We can fight long covid but we need awareness.
I've had
#longcovid
for 2 years. I don't want to "rest" or get a check. I want to work, run, lift, study, date, stay up late, talk with my family and friends for hours, watch a movie, play videogames, cook, visit my grandmother, hike. And I can't do any of those things...
@loscharlos
Thank you brother. We sadly can't do anything else right now than scream for help and warn people. We don't really want attention or pity. We just want to get better.
You can quote me on on this.
#LongCovid
will rapidly become the leading cause of disability among young working age adults. It's already affecting a huge number of people. Many children are affected too.\
Seeing my friends on Instagram all having fun together while I have been too ill to leave my house for 2+ years, is a different kind of bad feeling. Like grief but for your own life. Don't recommend.
Damn you to hell
#LongCovid
.
Please stop harassing long covid patients and calling us weak/liars. We're just unfortunate people who want our lives back, so we take to speaking out online since doctors can't help. I tried to leave my house today and now lights are too bright, sounds too loud and I can't move.
There's a reason
#longcovid
patients may not look sick or desperate. First most of us are relatively young. Second, we muster all the energy we can to look presentable. You don't see the days of bedrest in a dark room required before and after an appearance just to have a shower.
I'd endure a thousand lockdowns, wear a mask for the rest of my days, constant vaccine mandates, only able to eat outside or takeout forever, If it meant I could get to live just 10 years healthy without long covid.
If you ever get a chronic illness like long covid, fully expect your friends to become strangers and progressively get more distant. If lucky, some family might be understanding and stick with you.
Haven't drank a drop of alcohol in over 3 years. Never was a heavy drinker. Exercised all my life. Even now I try to incorporate some sort of movement in a day. I eat very little to no processed food. I sleep 8 hours. I sit in sunlight as recommended. Yet I've never been sicker.
Listen to immunologist
@Daltmann10
"This (
#longcovid
) is a disease process that is destroying lives and has potential to destroy health services and damage economies, imposing a societal disease burden as large as that of rheumatic or cardiac disease."
Please don't go out if you're sick and avoid infection if you can. You never know who'll be the one to end up in a dark room unable to do anything like me. You might ruin your life or someone else's, possibly forever.
I actually tried many other supplements and even meds too, so before someone pops in and recommends X as the cure, I should warn you I've probably already tried it. And all this for an extended period of time. Not days.
The earliest decription of post infectious syndromes and manifestations like
#LongCovid
I could find was in 430 B.C. During the plague of Athens called "Λοιμός" in Greek, documented by Thucydides, a historian who was fortunate to survive the disease himself.
#LongCovid
actually looks a lot more like traumatic brain injury or MS than depression or anxiety upon presentation, especially after examination and history is completed. Clinicians with actual experience can attest to this but they are often too busy being doctors/researchers.
My Long Covid worsened after 3 years and I can't use my phone, walk, sit up, or speak more than seconds. I'm typing this on Ativan which I first took a couple of days ago. It briefly enables me to write & go to the bathroom. I have no choice but to take it until it stops working.
This is big, folks. The
@WhiteHouse
is supporting next generation—nasal and variant-proof Covid vaccines —and therapies with a $5 billion program by
@ddiamond
Thanks to the relentless efforts of
@AshishKJha46
and
@WHCOVIDResponse
👍
I'm declining rapidly. Can hardly use my phone. I have to wear sunglasses in a dark room. I'm scared. I hope this passes but I haven't felt that way since I was severe almost 2 years ago. Please keep up the fight always.
#LongCovid
#MECFS
Why would a billionaire invest in rapid
#LongCovid
research when everyone else just ignores it? My guesses are he understands:
1. The pandemic isn't over.
2. Everyone is at risk of
#LongCovid
3. LC is costing billions to the economy.
4. A treatment for LC is a billion$ avenue./
About the hidden replies there are some horrendous and possibly dangerous stuff there. You can still see them if you want. There is no conspiracy lol. I just tried to filter out some garbage answers from trolls so they don't flood the post and i can read the comments.
Third Christmas with
#LongCovid
. Christmas 2 years ago I deteriorated, bedbound, too weak to talk much or use a phone at 22 years old. Wished by next Christmas I'd be healthy. Then the Christmas after that. The only gift that matters, health, eludes me. It's dark here...
Your body and brain don't work anymore. You need a carer. You can't do the things you loved. Only outings are medical appointments. Doctors can't do anything for you though. Loved ones have drifted away, they don't call or come visit. You reminisce happier times. What are you?
/and the thing is I used to be worse. I expected I would be ok by now or that at least help would have come. But instead everybody just wants to move on. Even if what happened to me is rare don't I deserve a chance to fight back for my life? Why have I been left for dead? Why/
Me, before Long Covid ruined my life 3 years ago. I was working in a gym. No, exercise is not a treatment or a cure for my condition. In fact it's impossible to do without getting much worse and bedbound.
Long Covid continuously robs you of so many life experiences that it is hard not to feel hopeless. But today, my heart keeps me going because I know there are still good people in this world. And that has to mean there is hope for me,and all those suffering, yet.
does no one care? How many do we have to become before we actually get some help? Every day I fight with all my being. But today I just feel heartbroken for all that is lost, and all that could be ,if it weren't for long covid.
22 year old(TWENTY TWO) olympic! level athlete Sarah Vogel can't take care of herself after "catching something" in february. She clearly has severe long covid = ME/CFS yet none of these are mentioned in the article. Misinformation has won. People are being buried alive.
1/1 Da ist sie wieder, diese "rätselhafte" Erkrankung. Der Name darf nicht genannt werden, und niemand weiß wie man das behandeln kann!
"Deutsche Olympia-Hoffnung (22) schwer erkrankt – sogar das Karriereende droht."
Who's gonna tell my family my life is over at 24 because there is no urgency or real funding to research or treat
#longcovid
? Who's gonna tell the families of
#LongCovid
&
#longcovidkids
? I can't. So I keep waking up. Crying for help. Fighting a losing fight for 2.5 years.
This is obviously not an anti-vax post. Please don't interpret it that way. Obviously you should get vaccinated and boosted if you want to avoid severe illness and maybe reduce your chances of developing long covid.
I spent almost 2 years of my early 20s healthy. Then 3 years confined in a bed with my body and brain not working. I didn't get to enjoy a time most people cherish forever and there's no indication this will end. In the photo, the type of person that gets
#longcovid
at 21.
@MarkMooch
It was a multiyear study with a huge population and detailed medical records. The association was too strong. Also there is already preliminary data of MS being reversed by targeting persistent ebv infection.
People really really don't understand how bad long covid is. I was in the same position declining rapidly the first year. My heart breaks reading this. Long covid is not knowing If you're going to have the strength to talk tomorrow, not tiredness. God, we need help.
My condition has declined fast. It’s clear I have severe
#MECFS
I can’t eat solid foods, or feed myself.
I have moderate pain almost 24/7.
I have trouble breathing and lose my ability to stay fully conscious when my symptoms intensify.
I cannot leave the bed.
I am scared 😔
After Dianna's showcase of her illness' daily horrors, a lot of people, I mean a lot, jumped to weigh in. Accused her of attention seeking, overreacting, lying. Because she had to shave her head a tweet made fun of her and long covid patients for "pretending to have cancer". /1
Imagine for a second that there is no insulin, no chemo, no steroids/ immunomodulators, no antiepileptics, no antiretrovirals, no antibiotics, no surgery, orthopedic or otherwise, no heart medication, no dialysis.
There also no tests yet for the conditions they would treat.
If I ever get better from
#LongCovid
I'm dedicating my life to helping sick people. I don't know in what capacity or in what way, but there's just no other path for me in life. Nothing else matters and nothing else makes sense for me anymore than fighting for people's health.
This is who gets
#longcovid
. I can't believe this was me. What happened to me? Where did my self go? I miss him so much. Centuries of science and no one knows why I can barely talk or walk, much less work out. Please help us. This is hell.
#treatlongcovid
#LongCovidKids
#LongCovid
disabled me.
More than 2 years after a mild infection I can't work and I'm mostly bedbound.
I can only work out in my dreams now.
If you think being young and healthy protects you from long covid, please think again./
Trigger ⚠️: Sometimes living with
#longcovid
feels more like accepting defeat than fighting.
#MECFS
patients know this all too well. The lack of urgency we are faced with because we are not actively dying is in tremendous disconnect with the hell patients experience daily.
I am puzzled by how most people define "loss" during these pandemic years. How about a family member or friend to covid? A child? I spent my early 20s bedbound with Long Covid and sensory deprivation 99% of the time and still do. I may never live again.
You'll be all right.
everyone i know in their late 20s is having an existential crisis because we skipped our mid 20s in the pandemic. relationships fast-tracked, careers faltered, we lost those core identity-building years and now we feel like 23-year-old brains in bodies approaching 30
TW: The fact that
#LongCovid
doesn't kill you is both a blessing and a curse. On one hand you're alive. The possibility to get well exists in theory. On the other hand because you're not dying, hardly anyone takes you seriously or tries to do anything with any sense of urgency.
#LongCovid
took everything from me at 21 years old. I am now 24. I have become physically and cognitively disabled. There are no treatments. There are millions like me, even kids, and we are hanging by a thread. I don't know what to do. We need research and trials. Please help...
🎙️I want to strengthen our health advocacy community. Having recently hit 10K followers, I’d like to start the year by using my platform to amplify your voices
Quote tweet or leave me a comment if you have an important health promoting message you would like me to retweet
I also take care of my mental health. My weight is healthy. Yet
#longcovid
keeps my quality of life extremely low. I can almost never leave the house and when I can it's for short trips which result in days of confinement after. Healthy lifestyle is a delusion that fell apart.
So, many people under my post saying I'm sick from the vaccine. Try this if you can. Look up when the vaccines were rolled out. Then subtract 2.5 years from the current date. I didn't even have access to any vaccines until after a year of being sick due to my age.
@MarkMooch
From what I understand it's a prequisite. It increases the risk of MS like 32×. Not everyone with ebv has ms but everyone with ms has had ebv.
If you recovered from
#longcovid
by going to a naturopath, not drinking coffee, not eating carbs, yoga, detox, massage, acupuncture, number of trace amounts of random supplements, cbd etc., you either didn't have
#longcovid
or got better spontaneously.
If we wait until there is one definitive biomarker to even acknowledge
#longcovid
exists it will be too late. Gentle reminder that MS, the leading cause of neurological disability among young adults, still doesn't have a sole definitive diagnostic test after a century of research
You are a
#longcovid
patient. If this sounds like like growing very old to you you're right. Only it happens in your 20s, 30s, 40s, 50s. Even in kids, God help us. And there's no help, no treatment. People move on and look away because frankly, you make them sad.
So please, stop the mental gymnastics to justify yourself not caring about anyone but yourself. Just say I don't care about anyone's health. I'm invincible. Vulnerable people don't concern me. Even though it's terrible, it shows guts and self awareness.
Thucydides writes: Some people were “seized with an entire loss of memory on their first recovery, and did not know either themselves or their friends.” Many survivors suffered lasting damage to their fingers and toes, genitals, and eyes.
Sound familiar?
#longcovid
Confronted with this reality they get defensive/offensive. Long Covid is fake. You're lying. It's rare. It's from the vax. These are obviously false. If they admit that, they admit they are in denial, don't care about others & can't bear even a little discomfort. So most don't.
How I plan a drs appointment these days. Half a day rest before and after a shower. One day rest to be able to go out the door. One day rest after to be able to move around the house again.
#longcovid
Anyone notice Long Covid minimizer scientists are getting more and more desperate? At first they doubted the syndrome existed, then that it could happen after vaccination, and are now clinging to the "rare" argument because they just can't say it's not real or serious now.
If you are a scientist/doctor/human tweeting about LC obbsesively focusing on prevalence or generally bending over backwards to minimize the magnitude and/or severity of suffering caused by long covid, you are seriously part of the problem and helping no one.I have yet
The move is very very good and brave of German officials.
#LongCovid
is a huge global problem that is not going away, if research and clinical trials are not appropriately funded. If it wasn't too big to ignore I think goverments would absolutely ignore it.
I'm not going to bounce back from this. Not this crash, and not long covid. The longer this goes on the less likely I propably am to even respond to treatment if there ever is one. Most neurological diseases aren't treatable. I feel like I'm kidding only myself.
#LongCovid
Now imagine doing a clinical trial for exercise for epilepsy, multiple sclerosis, kidney faillure, heart faillure, HIV, Hepatitis, Cancer, chronic infection, spinal fractures etc. All the while having no knowledge of what exactly those diseases are.
Anecdote: While ill with long covid I was phoned by the prof. overseeing my thesis before. I had participated in a study of his lab measuring among others max isokinetic lower body strength. While examining the strength data he told me there was one outlier. It was me.
Normally I wouldn't adress this. You can't argue intelligently with abusive trolls. But in my mind it is in line with how society, really has no grasp of what severe ME is, which many with Long Covid have. Antisocial twitter hooligans are on the extreme end of this theme. /2
A friend that checks in regularly said this to me after I told him I can't watch movies anymore and struggle to read:
"It sucks how you've lost even the simplest of joys".
Damn, I thought. He is right. Talking or standing for as long as I want is like a wild fantasy.
#LongCovid
So from now on we can be transparent. I am gonna share my
#LongCovid
story to warn people and hopefully get my health back one day by raising awareness, and I ask you to ignore me or admit you have no humanity. But please, have some guts and don't spin it around any other way.
I know you don't like me. I can't like you either. You try and justify the death and ignore the disability of your fellow humans and show no empathy, no heart. I am one of many whose lives were ruined by the virus you minimize & I'm not going anywhere.
Trigger: months into a crash that I thought would subside, and after 3 years of already severe long covid, suicidal thoughts visit me. I don't want to die. But being in a dark room for years, frequently unable to speak or move, I'm not surprised those thoughts emerged.
I'm not implying all those things don't have a significant effect on health. Nor that people shouldn't follow them. But I'm living proof that they can only reduce your risk of a chronic disease. Not eliminate it. And definitely not cure it.
"Long Covid is malingering", said the guy/gal working a 9 to 5, exercising none-2 times a week, to the captain of a high level team in a contact sport, losing literal millions by not playing, because he has Long Covid.
I'm sharing this because I see a lot of victim blaming going around and framing Long Covid as a disease affecting the frail, unhealthy and old. Even if that is the case for some, they were all still functioning a lot better than now and didn't deserve to get ill anymore than me.
I've witnessed 80 year Olds with more functional capacity than me. I'm 24. And like a very old and sick person I often feel like I'm just waiting for my life to pass. But it's so soon. I don't wanna go yet. I haven't even started my life. Why can't I get to live like my peers?
A sense of loss overtook me as I woke up on my 24th birthday. It has replaced the warmth, connection, and happiness that used to surface in me. What's missing? My health? social life? My dreams? dignity? My youth? My self? Can't pin it down.
Because
#longcovid
took everything.
Before insulin was discovered, diabetic people including children were put into clinics. The treatment included, starvation, coffee, and alcohol. This is the level of care available today for
#longcovid
about 100 years later.