Long COVID and the Journey Back
by Matt Barkin
I spent most of the pandemic sick and rotting away in bed. It became my all-purpose piece of furniture. If you watched a sped up version of that time you’d see me there windmilling my arms around like a madman between my computer, phone, books, plates of food and my sassy cat Buddha. I even smelled like I was rotting. At least I finally stayed still long enough to write a screenplay. It’s dark.
No amount of rest, caffeine, or food made me feel better. My nervous system was fried and I was so depleted at the time that my body was struggling to maintain any semblance of normalcy. I developed PTSD-like symptoms for no apparent reason. The slightest annoyances turned into full blown panic inducing events. No matter what I did, my body felt weak, hungover, and I got waves of feeling sick over and over again.
A few months prior in January 2020 I stumbled onto a plane after a commercial shoot in Australia in shambles. The job had been fairly simple, but the drinking, the travel adventures, and the lack of sleep had finally taken its toll.
Reuters news notifications came up about a strange new illness in China. “That’s not something I need to worry about,” I thought, before I leaned back and settled in for the long flight back to San Francisco.
My long work days as a video producer, the lack of adequate rest, and stomach issues went on for years leading up to 2020. Some people would just call that, “Life.”
A fellow film-maker once told me that, “No one could tame me” and nothing could. Until I got COVID.
When I got back it wasn’t long before all of my production work disappeared. In the meantime I was organizing a fundraiser for a project about Alzheimer’s disease. At the event a modern dancer in all black careened around the room, her gestures, dark and ominous, were set to a driving industrial beat, a harbinger for what was to come for many of us. Many people at the party hadn’t even heard of Covid yet.
A friend who had been at a similar event in Oakland that week showed up and he looked worn out. When we caught up I didn’t know that his breath particles were infecting me with COVID-19 right there and then. Later, I told one of the organizers that we had nothing to worry about.
Two days later I was sick and lockdown had begun. Covid tests barely existed at that time, so I wasn’t sure what I had. That week, all I did was watch Tiger King, get high, and gasp at news headlines of fires, impending world wars, killer diseases, and repugnant hillbillies.
The “flu” had lasted a little over a week. Cases were still relatively low in San Francisco and I felt better after hunkering down for so long.
In San Francisco, no one did much of anything. We’d been the first city in the country to order a lockdown and people here were not kidding about it. Maybe we had learned our lesson in time? Probably not.
By April it was clear that America was in it for the long haul. Photos of nature’s return circulated online. With less cars on the road the smog started to clear out of LA. The canals in Venice cleared out. “Nature was healing.”
Instead of Burning Man that year we decided to do our own “Burning Matt” for my birthday in the forest on a friend’s property where all the gear was stored. The property was surrounded by trees so we were able to have everyone camp and share an outdoor kitchen to keep exposures to a minimum, or as we called it, “Covid Cali Kosher.”
We set up our Burning Man structures and put couches, a DJ booth, rugs, and lights into a little village arrangement behind the house and started the party with some ridiculous improv games and psychedelics.
Many of us wore gas masks because of the smoke from nearby fires. It had an absurdist post-apocalyptic vibe, like Mad Max in the forest.
The next day I woke up to two of my friends climbing into my bed. They asked me if they could play this new “non sexual” game they had come up with called Flip-Flap Flipper Mash. I was happy to have such lovely company. They pulled my penis out and flopped it back and forth on my legs like they were hitting a drum with half-cooked spaghetti. They cackled like hyenas all the while. I allowed it until the “non-sexual” bit started falling apart.
The weekend turned out to be a resounding success by all measures except, well, my health. It was to be my last hurrah for a long time.
I had pushed through my energy envelope and drained myself considerably. I wouldn’t fully recover from it for years.
After Burning Matt, it felt like I was stuck in a rut. My body was tinged with aches and chills as if I was getting sick but the sickness never came.
Later that week, I was still confused. I had never actually gotten sick but the feelings had come and gone continuously. I couldn’t explain it away with depression, lethargy, or “just getting used to everything again.” This was something different. I started to notice that my tolerance for alcohol was greatly reduced. Now we know that it can be a sign of Long Covid.
We know now that, for each long-hauler, there are personal triggers that cause the “flare ups” but there are also pretty universal ones too, such as lack of sleep, pushing through your energy envelope, stress, dehydration, exercise, and lack of nutrition. Back when we weren’t sick, these triggers might have felt like minor annoyances. The loud door slams, we get a bad night of sleep, or maybe it was as simple as the annoying tiny dog next door yipping at us. Now, these annoyances have become actual triggers that cause us to feel ill. It was like my baseline had changed to that of a sick old man.
The key, I eventually found, was to understand what triggered me. Once I was triggered I would experience the flare up for days or even weeks chock full of the previous symptoms I mentioned. Think of it like overfilling a cup of water. Things like stress, exercise, lack of sleep, alcohol, inflammatory foods, all add to it. Once it’s full it can spill over and then we get the flare up.
By winter my bed had become like a life raft. I slept more and more but no matter how much I rested it was as if I couldn’t catch up on sleep. I spent most of the day in bed. Minor things really affected me. Even a walk around the neighborhood was difficult. I would look at people next to me as if from a great distance. Everything felt far away and difficult.
My pauses mid-sentence made people uncomfortable. I found myself struggling to be social. Conversations were exhausting. I’d tell myself things like, “A soldier’s sword is still sharp even when he’s stuck in the mud.” I just needed time to respond. I wasn’t becoming stupid.
The only thing that seemed to work as a charging station, was to go back to my bed raft, close the blinds, and do nothing for hours. People stopped inviting me over.
The more complex the task, the more it drained me. If it involved using several different senses or systems in my body at the same time, forget it. When cooking I usually listened to music or a podcast and I’d read a book while I ate. Now that was nearly impossible. I had to do one thing at a time to conserve battery power. I even turned the brightness down on all my devices to the bare minimum. Sound, light, and chatty people were to be avoided at all costs. I wore baseball caps and sunglasses in my car with the visor flaps down. I limited myself to one errand or work session a day. If I tried to do more, I would crash. It was terrifying.
The two hardest changes that I had to make were related to my relationships and my activities. I liked to surf, to bike, to dance but suddenly those things made me feel sick again. Through trial and error I learned what affected me. I kept copious amounts of notes and did constant check-ins. I noticed that my PTSD-like symptoms would flare when I was around certain people.
My nerves felt like they were hooked up to a broken computer that short circuited throughout the day making me jolt like a busted robot. I needed to figure out how to restart the damn thing. A personal trainer was recommended to me who worked with NextlevelNeuro. They were a husband and wife duo with loads of Neurological rehab training experience. I spoke to them on the phone about my troubles. They had a plan. No one had listened to my story like that before. I nearly cried.
The core of their class taught us different techniques for measuring what our bodies liked and didn’t like. Then, they would teach us bizarre drills that stimulated and re-trained things like our eyes, nervous system and our brain.
The results were incredible. For example, there was a rotating wrist exercise that I could easily do anywhere at any time that my body really liked. I’d be in line at the grocery store shaking like a Pentecostal from my neurological LC issues, my eyes sagging with fatigue, and I’d flick my wrists around and suddenly I’d feel almost normal again. It was like a magic exorcism.
Apparently having stomach issues BEFORE I got covid gave me a higher susceptibility of getting Long Covid. The imbalance foundation was easier for the virus to crumble.
By 2021 I was like a detective investigating my own body. I kept experimenting on myself with different treatments, diets, and vitamins.
I tried to stick to one treatment at a time so I could have a better idea of how they affected me. I found that it was important for me to stay hydrated, rest, and go for walks to get blood flowing. If I had to pick five things that helped me the most over those two years I would say:
- Rest – I avoided stressful situations, worked less, and cut out foods that stressed out my digestion.
- Breathwork/Meditation – Meditation and slow deep breathing every morning and night in bed.
- Diet – For me, that meant, whole foods and a low histamine/FODMAP diet.
- Anti Virals– I tried Vedicinals-9 and the human version of Ivermectin. Now they have Paxlovid.
- Vitamins – A,C, D, Niacin, minerals, B-complex, Aminos- but really, too many to say for this article. In my book, “A Short Book on Long Covid” I have a chapter on them.
If I had known about these treatments initially, it probably wouldn’t have lasted so long for me.
I’m three years in now and I can’t help but feel some appreciation for the things I’ve learned from this fucked up journey. Now I know how to prioritize my health, my time, and the things and people that matter. Of course, I’d much rather have been healthy but hey, we can only play the cards we’re dealt right?
I often talk to and think about the many people out there who went through even worse experiences than I did. I honestly consider myself lucky. After sticking to a number of treatments that worked for me I felt about 95% better. It could have been so much worse. And something good has come out of my experience.
The tools I learned to heal myself would hopefully help me through the long life I had ahead. But even if it was to be short, somehow, I still felt ready to face it with a smile.
Matt Barkin is the author of A Short Book on Long Covid, Burnout and Chronic Fatigue: Neuro-Exorcisms, Back Alley Blood Cleanings, and How I Unlocked a Pandemic Mystery, available here.
Yet another reminded that the pandemic is NOT over, and that taking away all the safety measures and state-of-emergency during the highest numbers ever (600 deaths-per-day in the US, 6.7million dead worldwide since 2020, 30-plus-million with Long COVID in the US) just puts us in even greater danger.
(Info courtesy of the tireless aggregation of Violet Blue’s weekly Pandemic Round-Up: https://www.patreon.com/violetblue/posts?filters%5Btag%5D=Pandemic%20Roundups )
Get vaxxed 💉 Get boosted 💉 Mask up 😷 Social distance ↔️
Yeah be sure to do what CSL3 says. He should know with all of his, ahem, medical degrees. Charles darling have you given up hope trying to tell successful TV producers that they need to include Covid-19 in their episodes and taken to trolling poor old BAS authors? Poor thing, you really are desperate for attention. Honey most of us are so over it and you really should be too by now. Maybe you should take that long anticipated trip to New York City – if you can scrape together the airfare.
But- In all seriousness Matt do you know for certain that that you had covid? Or could it have been something else? You may want to have some tests done for other things (lupus?) because JAMA says long covid is not necessarily a thing. https://jamanetwork.com/journals/jama/article-abstract/2787741
Thank you for this article. It comforting to know people are healing from LHC. I can relate to your description of doing everything in bed. I did the same. I caught COVID the week we went into lockdown in San Mateo County in March 2020. Pretty sure I caught it at a local Cafe. I’ve spent the next 3+ years trying to get better. Flare ups were frequent and debilitating. The fatigue, brain fog and dehydration were frustrating. I spent a lot of time at an infusion center receiving IV fluids. Any time I caught a cold or had any other ailment, all the symptoms were magnified. I used a lot of the same treatments as you. My ND was already treating me for another health issue, so she helped me a lot. I was already practicing neural retraining, and that helped as well.
The good news is that I’m finally healing after 3 years. Just last week, I noticed the taste of thyme in my cauliflower mash! … We’ll see if it sticks. Stay strong!