keeping it kitsch (or, long covid stole my life & i'm very sad but i'm still trying to write you this newsletter)
sorry everyone, i'm complaining again
**This essay discusses disability and includes brief mentions of mental illness and attempted suicide.**
I haven’t been writing this newsletter as often as I would like to. I don’t necessarily want to explain or apologize, but I do want to let you know where I’ve been– how I’ve been. I’ve written to you before about having long covid, about being sick. I’m still sick.
I’ve been very sad about it lately. I think I’ve been wallowing.
Right now, I’m sitting in my bedroom, trying to figure out what to wear to the cardiologist tomorrow. I want to look put together enough to be taken seriously, without looking so put together that I seem healthier than I am. Obviously putting on a pair of earrings doesn’t negate my tachycardia, but I’m well aware that doctors, like everyone else, make their initial judgments about us based on how we look. When I talk about my debilitating fatigue, any unnecessary effort put into my appearance might read as evidence that I’m lying, or exaggerating. It’s easy for invisible illnesses like mine to be dismissed as anxiety; I’m already a woman with well-documented psychiatric problems, I don’t want any more reason to be thought of as hysterical.
My wardrobe is generally what you might imagine for the kind of person who writes a newsletter called kitsch connoisseur. I’m going leave behind my puffy sleeves and loud prints tomorrow in favor of black shorts and a plain tank top. I don’t want the doctor to notice my clothes at all. I just want him to see the dark circles under my eyes. I just want him to take me seriously.
I just want someone to tell me what, exactly, is wrong with me.
When I first got sick, I was writing a lot. It was basically all I was able to do. I was quarantined and weak, stuck in bed, kept company by tv and solitaire and my own thoughts – I felt like I was drowning in those, so I jotted them down on scraps of paper and post-its and iphone notes. I kept scribbling fragments of stories and arguments and confessions; I have dozens of partially written somethings lying around.
But as I’ve slowly gotten better, I find I’m less able to write. In trying to return to my everyday life as much as possible, small daily tasks take up every ounce of energy I have. Washing dishes, doing laundry, taking a shower – now that I’m capable of doing these things, they’re about all I’m capable of. I’ve tried to calculate how much I think I can “work” on an average week (writing, responding to emails, actually focusing on phone calls) and my best guess is five hours. I can’t tell if that guess is overly optimistic or not, and I don’t want to think about it any more than I already have.
I’ve got a list of newsletter topics I’d like to write about, and a couple of posts partially written, but I’m struggling to find the energy or the brain function to follow through. I’ve been angry and miserable, and I haven’t really been able to focus on anything else. I haven’t written much about kitsch because I haven’t really wanted to.
All of my essays keep devolving into complaints. And the thing is, I love complaining, but actually being honest and vulnerable about what’s going on in my life is almost unbearably embarrassing. Because my life has fundamentally changed over the past nine months, and the truth is I’m having a really hard time adjusting. I’m having a hard time accepting. I’m having a hard time with…well, with having a hard time.
Despite my obviously shitty circumstances, I somehow still feel like I shouldn’t be so upset.
But here are the circumstances:
On New Year’s Eve, sometime around ten o’clock, I started feeling sick to my stomach. On January 1, 2022, I woke up feeling dead. There hasn’t been a single day since, this entire year, that I haven’t been ill.
On January 3, I stood in line for over four hours in the snow so a tired doctor in a church basement could tell me I’d tested positive for covid. I went home and holed up in my room, with the windows open and a fan cycling my air back out into the winter cold. I remember standing in the bathroom with my mask on, staring at myself in the mirror, and thinking that I could kill someone right now just by breathing.
I was sick, but not quite as sick as I thought I might be. And then I started to get better. And then I never finished getting better.
It’s September now, and my hair is still falling out in the shower. I’m still sleeping for fourteen hours and waking up tired. I walk with a cane now. I track my symptoms in a google form, because between the brain fog and the headaches and the general feeling of fuzziness, I just don’t trust myself to remember.
The main problem is the fatigue. I keep trying to find the right words to describe it. Other long haulers have compared it to how your body feels when you have the flu, or a really bad hangover. Sometimes I think it's more like all my innards have been scooped out, and I’m trying to pilot around a body held together by muscle memory. Hollow, sort of. I don't know. That's not right either.
In medical terms, my fatigue is hand-in-hand with post-exertional malaise (PEM). Doing anything at all – physically, mentally, or emotionally – disproportionately drains my energy, the effects of which I feel after the exertion, sometimes within minutes, sometimes not for days. I know that going to the cardiologist tomorrow means I’ll have to lie down as soon as I get home, and stay in bed for the following day, possibly longer. A walk around the block means a couple hours rest if I’m lucky. My younger sibling’s college graduation had me in bed for two weeks.
I understand all of this, but I want to know why. What exactly is making me so fucking tired?
Most doctors don’t really know. It’s not just that this is a new condition, although that’s part of it. No one knows what shape the body is in five years after a covid infection, because no one’s had it for that long yet. But post-viral illness is nothing new. POTS, fibromyalgia, and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are all common post-viral conditions that have been largely dismissed and ignored by medical professionals for decades. Almost half of all long covid patients appear to meet the criteria for ME/CFS – that means as many as 12 million people may be developing a disabling chronic condition right now, one that we have no proven treatment for because hardly anyone has tried to find one. People are desperate, and they have been for long time. ME/CFS forums and reddit threads are full of advice on finding a doctor who believes that the condition exists, and convincing medical professionals to actually help you deal with it. One of the only things we really do know is that ME/CFS patients, or anyone with PEM, shouldn’t be treated with graded exercise therapy (GET).
In March, I started treatment at a post-covid clinic based out of a PT rehab hospital in the suburbs. They promised me “multidisciplinary recovery services” so I schlepped out to their building, some forty minutes away from my house. (A long way to travel for someone as constantly fucking tired as I am.) After an intake appointment, the only multidisciplinary recovery service I got was a course of PT meant to treat my fatigue, which only made my fatigue worse. It was GET, though no one ever actually called it that. I was scared that the treatment wasn’t helping, and spent hours on google trying to figure out what I was doing wrong. I stumbled onto the very active online community of ME/CFS patients and advocates, and through their literature I felt like I finally understood a fraction of what was happening to me.
My primary care doctor, despite her lack of experience with ME/CFS or other post-viral illnesses, agreed that I should stop the PT. It was a relief and a disappointment. I was no longer following a treatment plan that didn’t help (that was, in fact, likely harmful) but I had nothing else to replace it with.
The best thing for me, everyone seemed to agree, was rest. So I have been resting.
And this is the thing that really scares me: the rest is helping, and I am doing better than I was in March, but I am still so, so far from functioning like I could in December. It’s been nine months, and my fatigue isn’t anywhere close to gone. And from what I understand, if post-viral fatigue hasn’t resolved with rest after six months, it’s probably chronic. It’s probably ME/CFS. And I don’t fucking want ME/CFS.
Patients with ME/CFS have worse quality of life scores than those with lung disease, renal failure, heart failure, and cancer. 75% are unable to work and 25% are home- or bed-bound. It’s still too early to say for sure that I have ME/CFS, and no doctor has tried to diagnose me with it, but it is a very real possibility and it is one that terrifies me. Because right now, it’s an essentially untreatable condition best managed through pacing – a method of managing your energy that requires you to shrink your life down into a series of small, manageable tasks.
I don’t want to shrink my life any more than I already have.
Because these are the circumstances of my illness if you go back a little further:
When I was 17, I tried to kill myself. This may seem unrelated to you, but it was the result of years of depression and anxiety so severe that I was frequently unable to leave the house for weeks at a time, barely managing to eat or move from my bed to the couch. It took years of therapy and medication to scrape my way into a real, meaningful life. It sounds cliche, but I fought hard to get to a point where I wanted to live again. It took me years to get a point where I really loved being alive.
So it does feel somewhat cosmically unfair that at 25, I’m suddenly worried that I won’t get to have much of a future. That I once again have to shrink my world to the size of my bed, my couch, and whatever tv shows I can escape into.
I wake up every day and feel awful. Not only is my body a disaster, I’m constantly trying to find some sort of hope, only to be crushed again and again by our government’s cruel apathy. I have lost my health, my job, my savings, and my social life. Even when I do have the energy, I’m often scared to go out because there are no mask mandates. The president went on 60 Minutes and declared the pandemic over. The CDC’s official policy is to close their eyes, shove their heads up their asses, and pretend everything’s fine.
Meanwhile, 2,503 people died from covid last week in the United States. 98.6% of the population lives in areas with substantial or higher transmission. Most people have no idea it’s this bad, because the government isn’t letting them know.
I’m tired, and I’m overwhelmed, and I’m scared. Scared of a future that may be as limited and small as my life is currently. Scared of my twitching left eyelid and my too easily elevated heart rate and my shaky hands. To really be vulnerable, I’m scared of ending up alone, because I don’t know how anyone is ever going to love me if I am so barely, barely able to function. Most days I feel like a burden, and a waste, and as much as I cling to the belief that all people are deserving of love regardless of ability, no amount of positive thinking fully alleviates the deep sadness I feel watching the world go by without me.
I want a lot more from my life than this. Among so many, many things, I want to write you this newsletter more often. I’ll get back to it soon. I’ll be able to focus on the things I love again, I know that. I’m not hopeless, and I’m not actually broken, I just a need a moment to admit that everything isn’t actually okay. This sadness will pass, or at least it will ebb, and I’ll write you a thousand words about pink lemonade or theme motels or glitter or some other silly thing that is just for fun.
Until then,
xoxo,
Franny 💋 😴