The Long COVID Life

The Long COVID Life

9/25/2022

I’ve been meaning to write this for months upon months, but have felt too terrible or unmotivated to do so. In truth, I still feel that way now, but I’m forcing myself to put pen to paper at last. Or rather, finger pads to keypad.

Long Haul Covid or Long-Covid—what is it?

That’s exactly the root of the problem right there WHAT IS IT?! And the answer is that no one really knows. I mean we know what it is: continued covid symptoms long after the infectious period has ended. And we know what caused it: covid. But we don’t really know what it is and we don’t really have any treatments either.

I first got covid in the last few days of January 2022. I had been extremely diligent about wearing a mask in public, practicing good social distancing (as well as anyone can who had a non-remote job during the pandemic), and excellent hygiene. I received all of my vaccinations and boosters (Thank God!—I truly do mean that. I would undeniably be in worse shape if I hadn’t). But, ultimately, I got covid from my sister who likely picked it up on a work trip to the state of Idaho (go figure).

She had no symptoms and probably wouldn’t have even known if she didn’t have to get tested first for an upcoming surgery. She tested positive, and my dad and I both started having flu-like symptoms around the same time. We both tested positive as well. No one else in the family got it at that time (strange indeed). We quarantined for two weeks, and took special care to avoid my brother Eli, who was doing his home MTC at the same time—he never got sick and was cleared to leave on his mission on time.

While my dad, sister, and I were quarantining, none of us had major symptoms. Dad and I both felt like we had a minor head cold at tops, and Mckinley only felt a little fatigue. However, towards the end of the first week, I did lose my sense of taste/smell for about 24 hours. It was a very bizarre experience. I could taste fine at breakfast, but by lunch I had lost it. The next day around lunch time it came back. In that window I ate raw garlic, drank hot sauce, rinsed at night and in the morning with mouthwash—zero taste. I got my taste back and went on with having virtually no other symptoms.

The infectious period ended and I tested negative, went back to work and life as normal.


Now would be a good time to pause and dispel a few rumors about long covid.

Long covid is not contagious—well it is, but not from people who have long covid. It’s only contagious from covid itself, if that makes sense. AKA, I can’t give you long covid, but Johnny, who is actively infectious with covid could give you covid, which could develop into long covid.

If you have long covid you can’t get covid again. False! Anyone who has had covid can get it again, though most in the medical field seem to agree that there is a period of immunity after having had covid that it is extremely unlikely for you to get it again.

Only unhealthy people can get long covid. False. There doesn’t seem to be any real correlation with health status and long covid. Many extremely healthy people get long covid (example ).

Since it’s such a strange disease that affects everyone differently, there are too many unknowns about the disease. I really don’t have the energy to get into all of those, so let me get back to my story.

After a week or so, I started to feel incredibly sick. I wondered if I’d already contracted covid again. Tested negative. I was the sickest I’d ever remembered feeling in my entire life. Walking up a half flight of stairs would leave me winded as if I’d just completed a half-marathon or was cycling up the side of a mountain. And the fatigue. I was sleeping 14–15 hours a day and waking up to feel as if I still hadn’t slept in weeks. Some days, I’d get ready to go to work, and start to feel so tired as if I was going to black out. I’d have to lie down on the nearest flat surface for 30 minutes or so to regain composure. I imagine those spells to be something like what narcolepsy patients experience. Bam, it hits you and you have to sleep. My dad was also experiencing some similar symptoms, but also many varied symptoms that I never had, like chronic muscle aches.

Slowly over time, my symptoms started to drop a little bit and I felt like I was getting better. I knew that long covid symptoms varied so much that I was hoping to be one of the quick recoverers. Some people only experience the symptoms for a month or so and get better, and other people like my poor aunt Lisa continue to have symptoms for years!

And then the dizzy spells started for me. I would be sitting on a couch, reading a book, and I would suddenly feel as if I were on a roller coaster or sitting in the back of a bus driving through the Swiss Alps—completely motion sick. The motion sickness would last minutes to hours or even days, and it always came on randomly. I still have never been able to relate any triggers or habits with the onset of these dizzy spells.

I went in to see my doctor in April after feeling constantly ill. He ran all sorts of blood tests, etc. to make sure that there were no other underlying conditions than long covid. Nothing. He prescribed me with Adderall to help with better energy management, to decrease brain fog symptoms, and to help with the dizziness. On paper I was so physically healthy that my life insurance company cut my monthly premium by 60%! But I sure didn’t feel healthy.

The symptoms persisted and my doc told me to keep taking the Adderall and trying my best to exercise—which I continue to do today. But the last thing you want to do when you’re feeling sick is to exercise! Especially when you know it’s going to knock you down for the next few days. Before getting covid, I’d bought a stationary bike during the pandemic to keep myself socially distanced and exercising. I was starting to lose a good bit of weight and typically rode about 20 miles per day listening to music or watching movies, etc. After my doc told me to start exercising again, I was struggling to even get 2 miles in a session. And those two miles would make me so tired and run down that I wouldn’t be able to do anything by lie in bed/sleep the following day.

As time dragged on, I started to feel a bit better. Still had the same symptoms, but the fatigue and tiredness felt like it was lessening. The dizzy spells stayed the same, but Dramamine helped mitigate that when the Adderall wasn’t enough.

In early June, I started to have strange issues with my heart. I would be lying in bed watching a movie and my heart would randomly start racing as if I were being chased by a psycho killer or something. And let me tell you, Pride and Prejudice and The Importance of Being Earnest are not that kind of a movie. After a handful of days with the heart going wonky, I figured I needed to visit the doc again to make sure I wasn’t going to drop dead of a heart attack or something.

He checked my cholesterol (claims it’s so good he won’t even bother checking it again for another 7yrs), did more blood tests, and ultimately, ordered me to get a heart scan, just to cover his bases. Went in for the heart scan a day or two later and again, healthy as could be.

“I can’t say for certain, but the best medical guess is that your long covid is flaring up and possibly even triggering a sort of physical anxiety attack. From other patients that I’ve seen, many of them experience new symptoms that come up and appear to be from their long covid.”

Fortunately, the heart palpitations simmered down a few days later and I was back to my usual old symptoms: fatigue, tiredness, dizziness, and minor brain fog.

The following weeks I carried on, exercising, taking my meds (incidentally, this is the first prescription I’ve ever had in my lifetime with the exception of antibiotics for the occasional bout of strep throat or what have you), and feeling genuinely terrible, though less terrible than I had back in March or April. In hindsight, I was also losing a lot of hair. At the time, I figured I was just finally going bald. Getting prepped to start the slide into middle age. But then my hair came back. During a phase of her long covid, my aunt Lisa had a lot of her hair fall out too, so I’m guessing that’s what must have been going on for me too.

I never had much brain fog in the beginning, but I hit a short period of having minor brain fog, a constant feeling of “what am I supposed to be doing at work right now?” Kind of like a ‘lost your keys and you can’t remember where you last put them,’ feeling. Or the classic walk into a room and you can’t remember what task you had intended to do there, kind of a feeling. Very high functioning, but just a little bit out of it. Those days came and went, with a few moments of similar brain fog popping up here and there—always having trouble remembering dates of upcoming events (that’s still often the case today, though not so frequent as then).

Skip forward a few months to September (let me look at the calendar because I’m not remembering the dates… go figure), Ah! September 14th.

I went to work and everything was typical that day, nothing wild. Around 5pm I started having serious Deja vu. But this was constant, lasting for an hour or two straight. I thought it was strange and that maybe I was just tired. Took a short nap, and got up feeling about the same. An hour-ish later, the Deja vu morphed into a bizarre dream-like state. Everything I was doing felt like a cloudy dream. I could still tell that I was doing things, but they didn’t feel actually real.

Of course, that happened to be the night that I also had to run the billing processes for work; a fairly complex process that you definitely don’t want to mess up! During the haze, I thought that I sat down at my computer to run that billing processes, but I wasn’t totally certain. At this point, I began to feel like I was in a Christopher Nolan movie—somewhere between Memento and Inception. I remember drawing on my hand with a red sharpie to help me realize I wasn’t dreaming—guess I was thinking it would help me like Dicaprio’s spinning top in Inception. I decided to finish the rest of the billing process at work early the next morning and went to bed, hoping to sleep off the delirium.

Early the morning of the 15th, I got up and went to work. The only problem was, once I was at work, I had no memory of driving there…yikes! My memory was super fuzzy and the dreamlike hazy symptoms of the night before were even stronger. As far as I could tell, I was behaving normally, but I was also suspicious that my mind was only telling me that I was behaving normally. I somehow ran the complex billing process correctly (later confirmed by a coworker, thanks Hannah!) and was interacting with customers normally…I think. But I did not feel well by any stretch of the imagination.

My memory turned into snapshots. I would be fairly sentient for a moment or two, realize what I was doing, and the next thing I knew, I was somewhere else in the building doing a different task, with no memory of moving there. Things were getting terrifying. I called my parents and told them I needed to go to the hospital. I called my doctor’s nurse and set up an appointment, though I didn’t actually remember doing that, and my parents had to call in and confirm. The nurse quizzed me on the phone and later my parents, and determined that a visit to the ER probably wasn’t necessary; ‘they’d squeeze me in as soon as they could, about an hour and a half later.’ In the meantime, I was commanded to stay awake and leave work. I went home and the strangeness persisted. One minute I was sitting on the couch, the next I was in the bathroom brushing my teeth…for the second time that morning. Then I was back on the couch wearing a coat that I had no memory of putting on. It was all very terrifying. I was beginning to wonder if I’d snapped or if someone had dosed me on some sort of hallucinogenic. But I figured that was highly unlikely.

The doc checked me out for symptoms of a stroke—all negative. Had me do a handful of motor skills tests—all normal. Tested me for covid—negative. Took a plethora of samples—all normal. And sent me on my way. At the office they kept asking me if I’d had a head injury or any traumatic events. But mostly the visit was a blur. I was instructed to sleep it off. And was banned from traveling to Seattle to see Roger Waters perform that weekend.

The next day I began to feel better. The end credits on my Nolan film finally rolled. In the afternoon my doctor called and told me that all blood results were good.

“So what’s wrong with me doc?”
“Well, strange things like this do happen once in a while to people. Honestly, we have no medical definition for it. The fact that you were acting coherently and normally in my office during your visit seems to show that nothing is wrong.”
“But, but, what?! That definitely wasn’t normal.”
“If I had to guess, I would say that it was an acute flare-up of your long covid brain fog. But to tell you the truth, I really don’t know for certain.”
“I guess that makes sense.”
“Yep. Can’t find a single thing wrong with you. All the tests were healthy. Excellent even.”
“Okay.”
“Just be sure to get lots of rest and call back if you experience any other issues.”

Well… that was helpful….

I felt terrible about abandoning my friend, the venerable Dr. Squatch, and our trip to see Mr. Waters. We’d been planning it for two whole years! But I was also really glad not to be roaming the airport like a stark-raving loony. Or feeling dizzy at the concert.

So I stayed home and slept 15 hrs a day, like the good old days of March and April.

I returned to work the next Monday and Tuesday, and then was supposed to be on another trip to Southern Utah, but was feeling so fatigued and dizzy that I abandoned the trip and have been doing virtually nothing this whole past week. Sleep, eat, dizzy, repeat. Finally today (25th) I’m starting to feel a little better—back to my normal long covid self. So who knows what the future will bring.



It seems like another brutal strain is going around at the moment. I have a few healthy friends who have gotten covid in the past two months who had to be hospitalized from their long covid symptoms. Be careful out there folks!

I’m not writing or sharing this to gain your sympathy or concern, but rather to shed more light on the bizarreness that is long covid. After all, it’s not every day that you get to be stuck on the forefront of scientific research…. I’ve donated blood from each of my blood draws to hopefully help in the ongoing research by scientists and medical professionals across the globe. Some of my blood is sitting in a lab in Iceland, or so they tell me. Hey, at least a part of me is getting to travel!

I’m truly grateful that I don’t have worse long covid symptoms than I already have. Plenty of folks out there have been hit much harder than I—experiencing hospitalizations, severe illness to the point that they’re entirely bedridden, and the like. According to recent findings of the CDC, about one in five American adults who got covid still experience long covid symptoms.

Other research estimates that nearly 4 million Americans are out of work due to experiencing long covid symptoms. I’ve been puzzled for months wondering why every job ever seems to be hiring still; looks like that’s a big part of the answer.

As for me, well, I’ll keep chugging along and hopefully break out of the cycle sooner than later.



11/16/2022 Update

Well, I never did get around to sharing my tale yet. It certainly doesn’t appear to be fully told. Hoping one day I’ll be able to turn the chapter and throw this experience violently out the window.

I meant to publish my travails to the world, but started feeling too sick and unmotivated again. As before, I’m nearly pulling my teeth out to even sit down and work on this again.

But the tale must go on. At least for historical record’s sake.

Since I last wrote, I’ve still been experiencing all of the main symptoms that I’ve always had, but now I appear to have added a new symptom of acne outbreaks. Breaking out like a pubescent teenager who bathes daily in butter. Seriously, I’ve never had acne like this in my entire life—not even when I was a teenager. I haven’t changed anything about my diet or otherwise. I’ve stumbled across a lot of other reports of long-haul folks having acne issues as well. Very annoying. I’ve had a crazy rash looking acne outbreak across all of my upper torso, front and back, that regularly looks like I rolled around in a vat of poison ivy. The acne rashes never hurt, and appear to fluctuate in their intensity. Some weeks it clears up a bit, others it’s back to full force.

As I try to understand my personal journey through this whole Covid conundrum, I’ve been able to look back and notice more symptoms that were swept under the rug by my major fighting symptoms. The hair loss I mentioned before is one. Seems like I’m hitting that a little cyclically. Bouts of intense or moderate anxiety keep cropping up here and there. Always over stupid stuff that I’d never have anxiety over in normal circumstances, like should I write this post today, should I buy chicken noodle soup? Completely ridiculous things that become very troublesome when experiencing the debilitating effects of anxiety. I feel horrible for people who regularly struggle with anxiety—I was always in the camp of “yeah everyone has anxiety at times, try your best to push through it.” But man, anxiety is not like anxiety, the average anxiety that people feel. Anxiety disorders are completely crippling, and I’m sure the dose I’ve been getting probably isn’t anywhere near how bad it is for people who have clinical anxiety.

I don’t know if it’s an anxiety related feature, but I've recently begun to have intense nightmares. I don’t wake up scared from them, but while I’m in the dream it’s scary enough that it wakes me up—often multiple times a night. I don’t ever remember having nightmares before, at least not since I was a small child, so it’s odd that I started to in the past week or so.

Feeling constantly dehydrated is another strange symptom I regularly get. No matter how many ounces of liquid I consume, the feeling still persists. I’m personally responsible for Gatorade’s stock rising two points over the year.

Every once in a while, I’ll also get blurred vision. Still able to see and function normally, but things appear slightly distorted like when you’re wearing those diffraction glasses. You know, the ones that look like 3D glasses, but are used for watching fireworks, make everything look like rainbows. I hear some people pay good money to ingest strange plants that will do this to them, but I can’t say that I’m enjoying my free Covid trial.

And the brain fog is so bizarre. I really do feel like I’m hallucinating or have dementia or Alzheimer’s at times. Though I fortunately haven’t done any more time traveling since the aforementioned incident in September! I used to be the king of hyper-focus, which I absolutely loved. But it’s been hard to stay committed or interested in taking on tasks that involve much brain power. I feel like I’m getting so lazy, and that terrifies me as much as anything, but when I try to combat it, the energy isn’t there.

The days fly on, faster than ever, and it never feels like I’m able to get anything done. Feels like I woke up 10 minutes ago, but, yet, the clock tells me it’s already 3:00 pm, and what on earth have I been doing all day? I mean, I know what I’ve been doing, but how could all of those minor tasks have taken up the past 8 hours?! I think, hope, that the weird passage of time is a brain fog thing that will go away someday. I legitimately have a hard time believing that it’s already mid-November. Like, seriously, what have I been doing for the past 9 months?! It doesn’t seem like I’ve accomplished anything this year. I haven’t been to all that many concerts, nor have I read many books, and I haven’t really even watched that many movies, so what the hell have I been spending all of my time doing?! 2022—the lost year.


Since my writing in September, I’ve tried a handful of experimental remedies to try and squirm my way out of Long-Covid’s death grip. I’ve experimented with vigorous exercise—doesn’t help. Countless vitamins—seems to make about 0.05% positive difference. Dietary changes—no real results there. Experimental IV therapy—zero result. Taking prescribed steroids—no change yet. Nothing really seems to make a dent. Physically, I have come a long way since feeling like I was going to die after walking up a set of stairs, like I felt back in March and April. That gives me hope that I’m slowly progressing for the better, but “Normal” still feels insurmountable from where I’m sitting (or rather, lying, in bed cause I’m feeling really sick again at the moment).

Anyhow, I think that’s about all I’ve got in me for now. But hey, I’m finally going to slap this thing up on the blog after all these months of meaning to get to it, so at least there’s that small victory!

🎵I will get by… I will survive 🎵