Amy @alexandrite113 Twitter profile

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Amy

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Help Amy Recover from Long Covid and Severe MECFS, organized by Amy S

Hi, my name is Amy. I was in great health until I got Covid-19 in April 20… Amy S needs your support for Help Amy Recover from Long Covid and Severe MECFS

www.gofundme.com

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Amy

@alexandrite113

1 year

Cheated on by boyfriend whom I was living with during the height of Covid in April 2020. He swore he was isolating, but then I saw his texts to a girl he was hooking up w, telling her his “roomie” (me) was “paranoid.” He thought Covid was NBD. 🤡 Now I’m disabled for life.

Pessimistic Persimmon

@Kenneth33071904

1 year

How did you get infected by Covid?

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@alexandrite113

3 months

“Covid precautions are unsustainable.” No. Fruit shipped from Brazil in the middle of winter is unsustainable. Depending on fossil fuels is unsustainable. AI overloading the energy grid to churn out “art” is unsustainable. Respirators & air filtration are not unsustainable.

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@alexandrite113

4 months

Why does everyone in America refer to the isolation and psychological damage caused by “The Lockdowns” as if they were welded inside their home for two years straight?

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@alexandrite113

5 months

I’ve spent the last 2.5 years mostly bedbound in a dark room, watching the rest of my 20s slip by while the world does nothing. All I can do is remember the person I used to be. She’s long gone. #MEAwarenessDay

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@alexandrite113

1 year

It’s possible that today’s children are the last living generation who will know a time when it’s “normal” to be able to fly across the globe, to eat fresh fruit out of season, to know what things like bananas and chocolate and coffee taste like.

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@alexandrite113

1 year

@blu_noz_pitbull I did break up with him for it. I think I even yelled. For me that’s going pretty far 😅

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@alexandrite113

2 years

#LongCovidAwarenessDay This girl who could lift 300 lbs, knock out 10 consecutive chin-ups, modeled, wrote several novels, loved to travel…. she doesn’t exist anymore

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@alexandrite113

10 months

People say they no longer mask because “I don’t live in fear” — but you DO live in fear. You live in fear of being judged. You live in fear of being seen as different. Stand out…. save lives. 🦾 #LongCovid

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@alexandrite113

10 months

My dad says I’ve been in bed for 2 years bc I’m “scared to grow up & get a job & be responsible.” He also says I’ve “manipulated” all my doctors into taking my side. To him I’m a sneaky, spoiled girl who wants her parents to “wait on her.” Nothing can convince him otherwise.

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@alexandrite113

1 year

@santabarba62480 Yes he does know, but I don’t think he can admit to himself that it was caused by him.

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@alexandrite113

6 months

My bf recently walked into his bank to get a new debit card but they refused to serve him until he took his mask off. Even after he said he was immunocompromised and deposited $ to his account in the drive-through AND got his face recorded on the camera outside — they still

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Amy

@alexandrite113

7 months

This girl ceased to exist at the age of 25. I’ll be turning 28 soon and I am sick as ever. I can’t go outside, can’t stand up for more than a few seconds. This is happening to millions of us. We have no treatments. We have been left to rot and die. #LongCovidAwarenessDay

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@alexandrite113

1 month

In a shocking turn of events that will surprise absolutely no one, my mom just told me that I have “NO reason to believe” that getting reinfected with Covid — the virus that made me go from an athlete to bedbound — would make my condition worse. She said: “I’m neutral on the

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@alexandrite113

1 month

Just learned that my mom hasn’t been masking. I thought she was but I asked her directly and she told me the truth. She’s gotten tired of it. So has my dad. I guess the unsaid part is that I’m already so sick, so severe, have lost so much of my life — what does it matter if I

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@alexandrite113

1 year

I’ve been bedbound for nearly 2 years during the supposed prime of my life, have suffered more than most people suffer in their entire lives, and my parents continually treat me with disdain, impatience, and contempt. I didn’t ask for this. I don’t deserve this

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@alexandrite113

1 year

Love how I followed all the rules in life — no overdrinking, no cigarettes, safe sex, good grades, exercise, eat healthy, wear a mask, treat others kindly— and now I’m cursed to live a bedbound existence while my risk-taking peers live happy adventurous lives. #MECFS #LongCovid

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@alexandrite113

4 months

Just learned that a friend of my neighbor was in the Long Covid Paxlovid trial. She was bedbound for 1.5 years but when taking Paxlovid she recovered within 2 weeks.

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@alexandrite113

5 months

When my bf goes to go pick us up food, we ask for curbside pick up because we are both immune compromised. The restaurant always says they don’t have it. But when my bf says his dog is in the car and he doesn’t want to leave his pup alone…….they always bring the food out!!!

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Amy

@alexandrite113

1 year

Hate when people say “You’re young, there will be a cure in 30 years…definitely in your lifetime!” My dudes, that is not in my lifetime. I will not BE HERE by then. I am severe. I cannot live 30 more years like this: my parents will die & I’ll have no way to survive. #LongCovid

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@alexandrite113

10 months

It’s actually insane because I was applying to jobs like crazy, got into grad school, was so excited to go….and then I became bedbound. Why would anyone CHOOSE to throw her whole life away to stay in bed and depend on her abusive parents? And yet his belief is unshakeable.

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@alexandrite113

6 months

My life is over at 27 (and 26, and 25) because my ex thought Covid was a hoax and couldn't be bothered to protect me

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@alexandrite113

8 months

My psychiatrist is normally very understanding about ME/CFS, but the other day he asked me: "If everyone on earth had Severe ME and could only do a few hours of activity a day like you, you wouldn't be the odd one out... so wouldn't you feel much better about your current level

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@alexandrite113

2 years

There's a special kind of sadness in knowing that your healthy, wealthy parents don't feel like taking care of you anymore because you didn't "get better" fast enough, and are now seriously considering sticking you in a nursing home to rot. At 26. FML #MECFS #SevereME #pwME

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@alexandrite113

3 months

It’s mindblowing to me that there is a disease that prevents many of its sufferers from speaking or eating and listening to music, possibly for the rest of their lives, and nobody gives a single shit

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@alexandrite113

6 months

Something strange happened to me recently. A person I'd been friendly with (or so I thought) asked me if I was going to an event. I replied "Nope, I am 95% bedbound lol (for the past two years) 🥲" She blocked me and later said I had been "passive aggressive and pissy" towards

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@alexandrite113

1 year

Absolutely. Once you get chronically ill and can no longer perform whatever duties other people were keeping you around for—sex, emotional labor, a gym partner, a going-out buddy— you realize that you are, in fact, completely replaceable and disposable.

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@alexandrite113

10 months

He’s also told everyone in our extended family the above. So, instead of compassion and love, my extended family views me with contempt and disdain. It’s heartbreaking. I have one of the worst diseases imaginable and yet I am treated like a pathetic, lazy failure.

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@alexandrite113

1 year

#SevereMEDay Before & after. And there are so many who are more severe than me, who can’t speak, can’t move at all. In the last 1.5 years being bedbound, I learned how much you can suffer and not die. I also learned that the sicker you are, the less people will believe you.

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@alexandrite113

2 years

I can’t believe I am 26 years old and filling out a form about a living will and attempting to avoid a nursing home. Fuck this illness. #SevereME #MECFS #pwME #LongCovid

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@alexandrite113

1 year

Before #MECFS I was a model, a recent college grad (& soon grad school!), a writer, an athlete. I could lift 300 lbs with my lower body. Could rollerblade 10 miles. I had so many dreams. For the last 1.5 years, I lie in bed in a dark room for 23 hours a day. #MEAwarenessDay

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@alexandrite113

8 months

As soon as I reveal I'm bedbound, any able-bodied person I've started talking to IMMEDIATELY ghosts me. It's like they stop seeing me as human. But, babydoll....just get sick. Just get unlucky. In a single instant it can all change, and then YOU will be the one people avoid.

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@alexandrite113

11 months

Me: no water, bedbound, thirsty. Me: “Dad, could you bring some water upstairs?” Dad: “No. I have my own problems” (He comes upstairs 2 mins later) Me: “You…could’ve easily brought a water bottle with you…” Dad: “Amy, I can’t wait on you. Just stop it, okay? Just STOP.”

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@alexandrite113

1 year

Pretty sure I just lost my last pre-disability friend. Even the ones who swear they’ll stick by you will eventually get tired of waiting around for you to get better. Each time you speak, you’ll have less and less in common, and before you know it, they’re gone.

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@alexandrite113

10 months

I've been lying in the dark for 2 years now and have nothing to show for it. No treatments on the horizon. I have lost years of my life and will lose many more. When you're healthy you think "life is short" but when you become bedridden you realize that life is very, very long.

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@alexandrite113

2 years

I'm sick of doctors literally laughing in my face I'm sick of my mom making passive aggressive comments about how bad I smell & mocking my pacing I'm sick of my dad refusing to bring me food If I had cancer people wouldn't treat me like this #MECFS #pwME

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@alexandrite113

1 year

Before: In the gym 5 days a week, lifting 300 lb, rollerblading, studying, fun social life After: Bedridden 95% of the time, dark room, can barely sit up, no TV, almost no speaking/phone/music — for 1.5 years now. #MEAwareness #pwME #SevereME #MECFS #LongCovid #MillionsMissing

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@alexandrite113

2 years

Before #MECFS versus after. Still that first girl, inside. 💔 #longcovid #pwme #Millionsmissing

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@alexandrite113

2 years

I can’t believe I once thought that dying would be the worst consequence of me getting COVID

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@alexandrite113

8 months

Gotta love how my old friends are on their 5th and 6th Covid infections and they're still traveling and skiing and working out and my first infection completely crippled me

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@alexandrite113

1 year

People don’t get why an energy limiting disease is so horrible. It’s bc energy is used not just for sports but also for talking, eating, digesting, thinking, breathing. That’s why, the more severe you are, the harder all of these things will become. #MECFS #pwME #LongCovid

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@alexandrite113

1 year

I bought a billboard for @BerlinBuyers in NYC, on the Hudson River Greenway, for Southbound traffic (e.g. traffic coming down into NYC) around W 155th st. If anyone is driving in this area between now and Oct 27 can you pls take a picture 😭 I had to PS it in for the tweet LOL

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@alexandrite113

2 years

Before I got sick I could do a set of 10 chin-ups, lift 300 lbs, rollerblade 6 miles, climbed mountains, ate 95% healthy unprocessed foods, rarely drank, never smoked…. Now I am bedbound. What a stupid, lazy article. #MECFS #pwME #LongCovid #SevereME

Sean Salai

@SeanSalai

2 years

Study links ‘long COVID’ to unhealthy life choices @WashTimes

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@alexandrite113

6 months

Called ahead (and even invoked the ADA) at my doctor’s office to ensure everyone would be wearing masks. They agreed and even said they don’t want to be liable for me getting sicker. When I showed up, only my doctor was wearing a mask (baggy blue ofc). The nurse and the

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@alexandrite113

2 years

I can’t believe I only get one life and I have to spend it lying in bed doing nothing for 23 hours a day. #MECFS #pwME #SevereME #LongCovid

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@alexandrite113

2 months

BIG UPDATE: My baseline increased randomly in March, and is now double what I could do in fall 2023. I'm back to where I was last summer, or better. I can do a combo of writing, watching TV, reading, phone - up to 7-8 hours a day. Physically I'm still severe w bad POTS... (1/6)

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@alexandrite113

1 year

My old psychiatrist did this to me last year. He instructed my parents to “withdraw from caring role” (“enabling” in his words) when I was very severe & too weak to feed myself. They were happy to listen. If not for a friend, I likely would have not survived #MECFS #SevereME

Petit Feu

@feu_petit

1 year

In dieser Präsentation wird u.a. dazu geraten, den Betroffenen die familiäre Unterstützung zu entziehen. 3/4

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@alexandrite113

1 year

I’m severe, 95% bedbound…my dad tells my mom that she’s “infantilizing” me by continuing to care for me. My situation feels precarious. I’m scared what will happen to me if I don’t spontaneously get better like I’m being told I need to do. #MECFS #pwME #SevereME

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@alexandrite113

9 months

Imagine an illness where your whole life is stolen from you in your 20s, doctors think you're insane or don't know how to help you, family think you're depressed, society says you deserve it for taking shots you didn't even get, & any meaningful treatments are decades away

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@alexandrite113

8 months

Me - "Long Covid completely crippled me and took away my life." Them - "That's what you get for not exercising and being lazy beforehand." Me - "I was extremely athletic before I got sick" (shows multiple pictures of me doing pull-ups, etc) Them - "Uh....shit. Well then-- you

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@alexandrite113

8 months

This reporting on only the very mild Long Covid cases needs to stop. STOP showing the people who can still work and get dressed and sit up and talk easily for half an hour. START showing the sufferers who have severe PEM, who use commodes, who need eyemasks & earplugs

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@alexandrite113

2 years

I now have to spend 98% of my day, in bed.

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@alexandrite113

1 year

Old friends: I got married! Old friends: I got a promotion! Me: I washed my hair all by myself for the first time in a year and a half! 😃 #MECFS #LongCovid

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@alexandrite113

7 months

The sicker you get with a disease like Long Covid, the harder it is to be heard. Because the sicker you are, the less you can speak. The less you can exert yourself without deteriorating & becoming even more disabled. And the less you will be believed. #LongCovidAwarenessDay

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@alexandrite113

1 year

A strange phenomenon I noticed: people often feel more sympathy and are more concerned for our caregivers than for us severely disabled people. I finally realized why. It’s because they feel that the caregivers are more human than we are. Because…. (1/3) #MECFS #pwME #SevereME

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@alexandrite113

1 month

@8JiveTurkey0 If ever a username was accurate, this is that time.

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@alexandrite113

9 months

My suffering is not making me stronger or shaping me into a well-rounded person or making me into a diamond or any of that BS. My suffering is destroying me

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@alexandrite113

10 months

Possible reasons to stay alive for a few more years 👇 -Monoclonal Antibodies (I had the OG 2020 strain) - available by next year?? - BC007 - by 2026?? - Ampligen - by 2026?? Any more to add? With future availability if u have an idea of it? Might make a bigger list later

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Amy

@alexandrite113

7 months

If you have pre-existing anxiety/depression and later develop Long Covid or ME/CFS, it's almost impossible to convince doctors that your problems are caused by anything else. Even if your T Cell count is approaching the level of an AIDS patient. Even if you can't eat solid food.

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@alexandrite113

1 year

Just had a call w my dad and #MECFS specialist where he tried to convince her I’m not sick. Then he said that I ask for “every little thing.” (I ask for food once a day) She defended me. He was not happy. This is the man Im depending on for survival. God give me strength

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Amy

@alexandrite113

11 months

Then again this is the man who would literally starve me all day when my mom wasn’t here, until my doctor finally told him to cut it out, so what should I really expect from such a “father.” 🤷🏼‍♀️

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@alexandrite113

1 year

It’s so hurtful when people are there for you at first, but after you remain sick for too long for their standards, they pull away. It’s devastating to realize that they have put a timestamp on your recovery & linked that to their friendship with you. #LongCovid #MECFS

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@alexandrite113

4 months

@pontevecchio5 “Not seeing faces for over a year” excuse me???

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@alexandrite113

2 years

It’s my coming up on my one year anniversary of being bedbound. From being an athlete/writer/model/artist to being a thing in a bed. It doesn’t get easier. #MECFS #pwME #LongCovid

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@alexandrite113

1 year

The irony of wanting to write about your sickness and raise awareness but you can’t because you are too sick

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Amy

@alexandrite113

1 year

You ever see an old picture of yourself and go “Who was she? She was so happy….and she could actually wash her hair on the reg….and she didn’t look like she has PTSD” #MECFS #pwME #SevereME

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@alexandrite113

1 year

@Shelbo001 ❤️❤️

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@alexandrite113

11 months

He recently had minor surgery (but can go for walks, cook, shower, etc). I wonder if he thinks my mom is "waiting on" him when she helps him with his ice packs. Somehow I doubt it.

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Amy

@alexandrite113

1 year

What doesn’t kill you just makes you weirder and harder to relate to

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@alexandrite113

1 year

I remember seeing this poster many years ago and I mostly forgot about it but when I was diagnosed with ME, I remembered it. (Now I found it again.) It stuck with me for many years in the back of my mind, even though I wasn’t thinking about it. Powerful messaging. #MECFS

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@alexandrite113

1 year

I don't know which is more terrifying: the deterioration of my physical ability, the sensation of my body becoming its own tomb... ...or the realization that I'm forgetting words and people's names. The lost feeling of entering what feels like early-stage dementia. #LongCovid

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@alexandrite113

1 year

Can you get Covid outdoors (without a mask)? Like, say, at an open-air market?

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@alexandrite113

11 months

The wheelchair I ordered arrived today and my parents are pissed

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@alexandrite113

2 years

I can’t believe I used to be able to draw like this. Now I can barely draw a stick figure. Fuck #LongCovid 😢 I feel like the “ghost drawing” on the left (from pencil rubbing off on the opposite page) #MECFS #pwME

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@alexandrite113

1 year

An old person dies after living a full life = people mourn. A young person’s life is effectively over due to a disabling illness, before they ever even truly got to live = people mock, gaslight, laugh, disbelieve. #LongCovid #MECFS

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@alexandrite113

1 year

Healthy people cannot imagine a disease that forces you to give up chocolate, coffee, TV, travel, socializing, music, sex, alcohol, sugar, nature, all exercise… Even giving up ONE of these is a big ask for most people. With #MECFS it’s a given, and likely forever. #pwME

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@alexandrite113

7 months

Even people with Severe ME/CFS can sit up for a photo in a nice dress in daylight. They do probably have to go right back to bed again after, and stay there for most of the day, but it’s possible. It doesn’t mean I am lying about my severity.

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@alexandrite113

5 months

On this year’s #MEAwarenessDay please don’t forget the people who are immobilized in dark rooms, unable to look at screens, unable to participate. They are most in need of treatments, yet they are completely voiceless and reply on the efforts of milder people to raise awareness.

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@alexandrite113

1 year

This picture was deemed too ugly for Instagram (and my mom said my hair looks dirty even tho I’d recently washed it) so I’ll just post it here….hopefully y’all LC folks will understand why my hair looks bad and also why I’m sitting down 💀💀💀

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@alexandrite113

10 months

A long time ago I accepted that I will never run again, never be athletic or work or travel again. But now I think it might be time to accept something else—that I will be bedbound for the rest of my life. And this is much more difficult to accept.

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@alexandrite113

11 months

When you first become bedbound with #MECFS everyone is very sad & very concerned. But then you wake up one day and realize you've been in the same bed for years & years and all those people have long since moved on and you're just a piece of meat that can't manage to fully die.

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@alexandrite113

7 months

Unbelievable how there are tens of millions of people worldwide with a disease that causes progressive deterioration until they can no longer digest food and somehow nobody gives a single shit

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@alexandrite113

2 years

@Craig_not_Creg i didn't even get vaxxed. strangely, whenever i say this to someone like you, i get accused of lying.

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@alexandrite113

2 months

Today, on #SevereMEDay , info is being shared to this effect: that MECFS scores worse on quality of life scales than cancer, or MS, or many other diseases. My mom - "How dare you say that cancer isn't terrible. People with cancer are suffering WORSE THAN YOU CAN IMAGINE." (1/7)

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@alexandrite113

1 month

@PaulRKeeble Not to Scientist Mom over here 🤪🤪🤪 I’m trying to find studies on it that will convince her but she doesn’t even read them. She just tells me I’m insane

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@alexandrite113

1 month

Cheating on me in April 2020 with a woman who had Covid, knowing I was at risk, giving me Covid -- and then abusing me so much during my acute illness (pushing me into a lit stove, screaming at me, slapping me) that it turned into a severe and incurable disability called ME/CFS.

azariah

@AzariahAmor

1 month

Can we start an evil ex thread? what’s the worst thing an ex has done to u?

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@alexandrite113

6 months

It's been 4 years. No one is coming to help us

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@alexandrite113

5 months

Managed to get outside again yesterday for a few minutes, with Lily.🩷 Hoping this trend continues. 🙏🏼

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@alexandrite113

6 months

After spending the entire fall & winter in a bed, I was able to go outside for the first time since July. Idk how long this improvement will last. Maybe it's from the season. Or Ketotifen. Or seeing my bf earlier this month (jk but not really) Trying to enjoy it while it lasts.❤️‍🩹

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@alexandrite113

8 months

We: *try to explain how PEM isn't just tiredness, that there's cellular damage, that PEM feels like dying/being poisoned/worst hangover ever* *show research studies* *show deaths from MECFS* People: "Sorry you're feeling lethargic 😕 Hope you can get some happy energy soon!"

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@alexandrite113

2 years

Sick of the notion among most people that the worst CFS can get is someone relaxing on the couch all day watching TV. No. At its worst, this illness leaves you in diapers with a feeding tube. You end up essentially blind, mute and paralyzed. #MECFS #pwME #SevereME #LongCovid

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@alexandrite113

1 year

I love that I have one chance at life, just a tiny sliver of existence in billions of years, and I get to spend it lying in bed in a darkened room doing absolutely nothing.

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@alexandrite113

1 year

….they can still relate to them, but they can’t relate to us severely ill people—they won’t let themselves—because that’s too terrifying. Our lives are too shriveled, too alien, and so their empathy taps out at a certain point. They’d never admit this, but…. (2/3) #MECFS #pwME

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@alexandrite113

1 month

Having to say “That’s awesome! Sounds great :)” when old friends are telling you about their amazing lives while sobbing and screaming into a pillow is not how I wanted to spend my twenties, thirties, and the rest of my life

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@alexandrite113

1 year

…. severely sick & disabled people are less human in their minds, subconsciously anyway, than our caregivers are. It takes bravery to empathize with someone whose life is so crippled, and put themselves in our shoes. And most people can’t do this. (3/3) #MECFS #pwME

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@alexandrite113

9 months

Literally this. The man who infected me with Covid (by cheating on me with a girl who was showing symptoms) has said it's a "hoax" and probably gotten it 5+ times. Last I heard, he was traveling Europe all summer. While I rot in the darkness.

Seets💫

@MamaSitaa__

9 months

Not to be a drag, but the worst people you know got covid and recovered and get to live their lives completely unscathed mocking you. That is why 2024 will be my villain era.

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@alexandrite113

1 month

But maybe I am just being selfish. They have a right to live. I am doomed anyway. What’s the point of keeping someone alive who can barely even have a life?

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@alexandrite113

4 months

@emilyesfraser Oh haven’t you heard, we’e just sick bc of “anxiety” from the stress of all the lockdowns. That’s the cause of all our supposed illness (that’s for those of us who didn’t take the vaccines—otherwise it was 10000x the vax!) 🤦‍♀️

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@alexandrite113

8 months

Has anyone else noticed that the half-moons at the base of their fingernails have completely disappeared since getting Long Covid and/or MECFS?

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@alexandrite113

8 months

Screw the images of a woman with a hand to her head -- THIS is the image that should go along with descriptions of PEM bc it's how it feels ... like i'm mummifying in my bed Used up all my spoons sketching this lol

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