I am feeling so many emotions right now. I have to use talk to text because I can’t type right now. I am having tremors and my vision is very blurry. Also I tried to type a message to a fellow long hauler, and I messed up every single word I tried to type.

Anyway, that’s not entirely the reason why I just feel so devastated right now. I was on social media, and a post popped up in my feed from a woman, I know. around my age with cancer. I really feel for her. She seems to have a great deal of love and support and but going through treatment.I can only imagine what she’s going through. I see posts of her creating things. playing music, performing live music, leaving the house, going out, and just being able to make her appointments. Just having appointments to go to… treatment options and support. Despite her condition and health struggles she is still creating and living her life. although I know social media is not quite what it seems.

I broke down into tears. I felt like a failure. I asked my boyfriend what am I doing wrong? I can’t even type or get out of bed at times, my absences at work are growing as I feel my condition worsening, and here is this woman with fucking cancer. look at all she is able to do with cancer. and I just sit on the couch or lay in bed, unable to move and severely depressed because all I want to do is create and live my life. and at times I feel disabled. And you can’t even tell.

I feel self loathing this morning thinking, “ well it’s not like you have cancer or something else”. Maybe I’m gaslighting myself today. I just feel so dead inside. I feel invisible.

Fellow Covid Long Hauler, here.

3 years 3 months in this hell

Surfing the internet, for Long Covid news, as usual, since I was “diagnosed” with this condition, and I noticed a few things.

I’m seeing and reading a lot of articles and “news” about Long Covid; not being real, may not be as bad as Influenza, Long Cold might be a thing too, etc.

Pay attention to wording. Words like “likely” “maybe” “may” “if” “yet”.

Long Covid “may” not be real

Flu “might be worse” than Long Covid

Long Cold, exists too, “likely”.

These people don’t sound too sure. Because they have no foundation, no proof. Pure speculation. So next time, fellow Long Hauler, if you see some dismissive piece of shit article, downplaying and invalidating our whole experience, just look at the wording. 🖤

And always always always check. your. sources

How do I navigate this new life? So many questions plague my mind. Ironic. What happens when you start to question yourself? What do you do, when you can’t even trust yourself anymore? Petrified on a daily basis. Do I have a future left to salvage; my career, mygoals. I’ll say one thing. I didn’t expect to lose my whole identity. Profound loss. I grieve everyday. Not only mourning my former life and identity and plans, health, and body, but also fearing that I may never recover.

The last 3 years, has completely changed everything, including, the now, lack of trust and faith in our healthcare system. It’s difficult enough dealing with the social stigma, not being believed, gaslit, dismissed, invalidated, and blamed for my condition. But who do you go to, when your doctors can’t even help you, and some just won’t, and many just aren’t equipped or educated to deal with the new post viral condition. It’s been an enigma. The data and research has been sluggish, and US government funding is minimal.

The world moves on, but where does that leave about, what was it…17….or 22 million Americans? The data varies, but the scale is large. Massive. The largest mass disabling event in HUMAN history. And everyone ignores that it exists. Officials silence scientists and doctors, government censors social media, one minute it’s real, the next? no big deal. Inconsistency. Negligence and Lies.

Long Haulers of the world, does anyone else feel betrayed? Betrayed by people we are supposed to trust to have our best in mind, especially when it comes to our health institutions? I do. Everyday. I feel cheated and robbed of time, years off my life. All because of MONEY. Greed. Capitalism. I said it. The fucking cunt elephant in the room. Think of how much money certain people made during the pandemic? (If you know, you know) Of course I feel robbed. Of my life. And millions of others.

This is murder, irresponsible, and negligent.

And all WE want to do is FEEL better. Not be sick anymore so we can continue our lives. All while they continue to censor us.

I don’t have to prove or explain anything.

Most certainly pertaining to my health.

But I’m an open book to a fault.

At times I speak about my struggle with Long Covid.

There are times I need to talk out my feelings

Maybe it seems like a lot. Most of the time I write my posts on my FB and delete them. I save them for another platform/outlet. I don’t even post most of what I go through on here. I don’t have to.

Maybe it seems like I’m being ”overdramatic”.

And maybe you don’t even believe it exists, because I appear “fine”.

Remember this is new to me, and a puzzle to the medical/scientific community

I’m having a hard time adjusting to a new life and new body, and having a hard time coping.

Maybe you see me at the bar, and see nothing wrong.

But you only really see me, maybe less than the 30 hours a week, I’m at either bar. If that. Because of symptoms I do not leave my house. Its a struggle.

There are 168 hours in a week.

Keep in mind, you only see what I allow you to see or what you perceive.

Also, your opinions, don’t provide the treatment, cure for my condition, or even the power to turn back time, and give me my life back, and my future.

So why should I care?

I still function because I HAVE to.

Someone has to pay my rent and bills.

And it sure as hell, won’t be you.

I still get up every day and go to work, EVEN though I’m in a lot of pain, and fatigued and can’t remember things. The list goes on. But we manage. I’m trying.

Bottom line: You don’t know what I go through daily. (for 3 years) At fucking all. You don’t want to know. You should actually take the time to become educated on the post viral condition, instead of ignoring what doesn’t serve you personally.

Practice some empathy and compassion.

We think we’re invincible until one day, you receive a hard reminder that you’re not. Try to function and keep a level head when you’re sick almost everyday, and watch everyone around you talk about you instead of help you.

A fellow Covid Long Hauler with thoughts on living with chronic illness in this society.

This is a sad truth.

“Unfortunately in a society that only values people’s ability to generate profit for someone else, those of us who are disabled and no longer able to do that satisfactorily are considered “worthless”. This is something disabled people have encountered long before LC was a thing. While I think humans do have an innate desire to help others and value human life, the way that we’ve currently constructed our society runs in opposition to that in order to create maximal benefit for a few at the expense of the majority.”

Migraine, day 5

I wonder how long this Long Covid migraine will last?

May 2022 - 4 weeks

October 2022 - 6 weeks

September 2023 - 2 weeks

February 2024 - 5 days and counting

I cried my eyes out today. Hard. I thought my brain and skull might explode from the pressure and pain. I was so sad, I didn’t even care if it did.

Tired of being sick. Tired of being sad and sick. Sick of being sad. Just …sigh.

2024…Things are …different. Personally, Self-care has taken on a new meaning, for me, living with Chronic Illness. I never recovered from having Covid (twice). I have Long Covid (Post Covid Syndrome) My priorities and what meant so much to me in the past, has dramatically changed. A lot is uncertain now. I have no clue what the next 4-5 years will bring, living in this condition.

You think you know yourself, until your body betrays you.

Still here, still hanging on, longing for the day I no longer have to suffer and struggle, to just feel “ok”.

I woke up early this morning. Made some Cafe Bustelo and threw on some John Coltrane. The sun is shining, it’s beautiful even though it’s cold. Did some things around the house, and folded laundry. I also decided to organize my photo archive and went for a walk. All before work. Can’t every morning be this awesome?

….I wish that were all true. Only thing that is true is, the sun is shining and I woke up early. Instead, I woke up early and I’m sitting around, “pacing” myself and conserving my energy for work. Moving from the bed to the couch. That is what Long Covid is like. Every fucking day. Like the movie Groundhog’s Day, but its a nightmare.

I miss my life.

My body.

A message from a Long Hauler to a friend…

“I’ve lived with anxiety, my whole life. I’ve managed it for this long and on meds and therapy breathing exercises, mindfulness, cbt, etc. i made so much progress from 2011-2018 with my mental health. But THIS. This is causing anxiety/flight or fight inside my body, and making mesad. the virus is still in here. in my cells. breaking down my organs. it’s affecting every system. this is what i’ve been learning about long covid…for 3 years now. and it can’t be seen on any medical test, yet, a medical anomaly. enigma. how can i trust anyone anymore, when people with years of the best medical education, and research, and scientists, can’t even figure this out yet. In fucking 2024. No cure. No pill. No treatment. There is not much I can do to help the symptoms. And they’re unpredictable, like a swarm (symptom storm) can happen any second, any day. I lose my balance at work, drop things, so many typos on the computer from tremors and shaking and making drinks and shaking, like a mouse. I don’t know what’s happening to me Amanda. My hair is greying, thinning. My hands are numb cold wet and shaking always. How can I take pictures? I can’t even leave my bed. Or couch. Mostly bed because it hurts to sit up. And I STILL work FULL time. I’m losing my mind, my sanity, my identity, my security, my purpose, my esteem. I don’t know what to do in “this space”. My future is so uncertain, questionable, based on my health. My heart scares me. My cholesterol spiked after covid, all of them, and now I have postural orthostatic tachycardia syndrome where my heart rate spikes and falls, when standing/moving. I have heart problems on dads side, so i’m concerned of my heart health now. AT thirty fucking six. Its effecting my brain/cognitive abilities, cognitive slowing, dementia type symptoms, extreme forgetfulness, can’t learn/retain new info, trouble reading, slurred speech at times, at times i can’t swallow. The physical act of eating makes me winded and tired. I need naps after everything. How Do i live? I think of all i used to do before. And i feel so incapable. So inept. Unable. Disabled. And I’m burned out. I’m so tired. And If i die tomorrow, my job will just replace me, within a few days. Most days I feel dead already.”

Will I ever get her back. I felt like she was strong, personable, happier, healthier, had this high energy and lust for life, looking forward to the future ahead.

Something happened. Covid happened. A pandemic. And I struggle with it everyday. Its been excruciating. I blanked on how to spell that. Someone with a once 4.0 college average. I can barely spell, do math, hold conversations, remember most things, my words slur sometimes; the “brain fog” has been relentless.

I feel so physically weak, and vulnerable. So many emotions everyday. Trying to stay strong. I know people mean well by saying things like “stay positive” and “feel better”.

Maybe they dont know what to say…No one knows.

I'm tired.

I used to have energy. I used to be productive. I could make a big 'to-do' list and take pride in checking off each item as it was finished. Now getting more than one thing done per day is a huge accomplishment (and will likely mean I'm extra exhausted tomorrow).

I used to be creative. I could spend hours at my computer writing or designing. I had creative hobbies, too, DIY-ing things. By December 1st I'd have dozens of handmade gifts ready to go for the holidays. Not this year. Now I can spend - at most - an hour doing any one of those things before everything becomes a jumble and my brain seizes up and taps out. (Only one thing per day, though! Don't want to over-exert myself!)

I used to get up early. I would exercise: daily yoga, walks, roller skating. Now I sleep as long as I can. I drag my aching body out of bed and hope that maybe today it won't be too bad, that I'll be able to move around without pain. I'm exhausted by 8pm.

This isn't old age.

This isn't menopause.

I can't work. I can't enjoy life anymore. I see everything that I loved about my life - about ME - slipping away. I want to be silly again. I miss my sense of humor. I don't want to lose these worlds and stories and fantastical ideas I've had rattling around in my brain. I don't want to lose hope.

This is chronic illness, I guess. Chronic fatigue. Fibromyalgia. Long Covid. Whatever they want to call it. All I know is that it's breaking me.

I'm tired. And I'm sad. And I want my life back.

Feeling trapped in this viral prison, every day. This Long Covid prison. Muscle Pain, joint aches, extensively long migraines, dizzy spells, tremors, tinnitus, the list goes on and on….hair loss, skin issues, digestive issues, dry eyes, oral thrush, no taste, no smell, no tastebuds, body temperature can’t regulate, night sweats, nerve pain, nerve itches. Goes on and on

Its quite overwhelming. In addition to the list of symptoms, my anxiety has definitely increased since I got “diagnosed” with Long Covid. So my mental health has also bee affected, greatly. All I could think about are my ideas and thoughts of “what I would and could do if I wasn’t sick”. I took my good health pre-pandemic for granted. Please don’t do it. You never know if you’ll be chronically ill or disabled one day.

** All photography is by me 🖤

But I wish to remain anonymous

Fall 2022

Now at month 36.

“22 [Months] and Counting” // My Struggle With Long Covid

1pm. Mom calls me for her daily wellness check-in. I am grateful, I have her support and love, at a time where I’ve felt so alone.

I’ve been living with Long Covid for almost 22 months. Maybe I don’t talk about it enough, although I feel maybe lately it is all I talk about. It is hard not to, when it affects literally everything. Every facet of my life and health. The symptoms are unbearable at times and vast. I feel like my body is frail and drained. Even with the smallest physical exertion. My heart rate doubles when I stand up, from sitting down. I’m finding it harder to hold up my body when standing, my legs shake, and I get dizzy. I can barely hold up my camera these days. It is almost impossible to sit and edit for hours at a time.

The immense depression I feel at times is unbearable. I don’t leave my bed, unless it is to work at the bar. I have to pay rent and my bills. But even my job is getting harder every day. My arms shake when I make drinks and the muscle weakness has gotten so bad, I can’t hold up bottles for too long or stand for too long without leaning on something for support.

But you wouldn’t know. I just put my makeup on, put on my face, and work. I often feel anger. Why did this happen to me? To us? Is this what I get for not wearing a mask? So many feelings. I sit behind glass, watching my friends and the world go by, time go by, as I feel like I’m deteriorating at 35 years old. And all I can think is, “I wasn’t ready.”

Feeling some kind of way.

Feeling like I’m being “punished” in some sort of way.

If I don’t hang out, please don’t take it personally.

Outside of work, all I do is rest because of Long Covid.

My life sucks now.

Its nothing personal, or anything against anyone. I don’t go out. I’ve pretty much become a recluse.

Can’t help but feel like ”out of sight, out of mind”.

Its like a big piece of me died” and none of my friends give a fuck, instead they get mad at me, for not coming out of my house. Sorry I don’t really drink or frequent bars anymore or whatever else.

Thanks. As if I didn’t feel more alone.

January 2023

…sitting down. Needing to. As usual. My head is running rampant with my list of to-do. Feeling mentally motivated to tackle everything. Thinking to myself…”Ok, don’t get up too fast from the couch, your heart-rate will double, you’ll get a head rush, and get dizzy.” Its about learning my limits and “pacing” with Long Covid. Google it. You’ll see what I mean. This is my current life. Pacing. Amongst other various techniques and symptom prevention/alleviation. I am my own advocate/nurse.

So I rise from the couch slowly, lift my bottom, rise up, lift my upper half and from there I rose up, Maybe too quickly? Because I got a dizzy spell and head rush again. Sat back down. All I wanted to do was eat breakfast, and make coffee. So simple. Or use the bathroom, or shower, or take care of my cats, work on my photography, workout, bartend, live my fucking LIFE!!!

And now my legs ache and are sore, because I got up slowly. God, I miss her.

Grieving my Pre-Covid body/health/self every day. 😞

April, 2023

“Are you okay?”

“But You’re doing great..”

Really? Am I? They have no clue. These are people close to me. It hurts so much to be living with an “invisible illness”.

Today, brain fog, forgetfulness, memory loss, fatigue, dizzy spells, and muscle weakness are plaguing me. With a constant subtle migraine..almost daily. I cry. Every. Day. I’m just barely trying to hold it together.

I participated in a local art show, and the opening reception was last night, I couldn’t even get out of bed. No one reached out..until this morning, 1 friend noticed I wasn’t there. And messaged me to check in. I felt so alone.

Every day, I feel like I’m closer and closer to the grave, and I’m scared. I’m only 36. I feel like I’m withering away. [2 years and 4 months in]

I first got Covid in December 2020, then in December 2021.

I created this journal, in hopes that I can reach other people living with chronic illness, to say, you are not alone. 🖤