Long COVID Is Real and I’m Still Struggling With It Nine Months Later
Yesterday, I saw my friend Bobbi. I hadn't seen her for a couple of years and it was so great to see her face. We hugged. She asked my how I've been and I instinctively did what I always do. I lied. I said, "Fabulous." The truth is- I haven't felt "fabulous" in a long time and masking it is getting more and more difficult. I am as tired of that as I am COVID.
I'll start with the good news first. My blood clot is gone. In late March, I was diagnosed with a Deep Vein Thrombosis in my right lower leg. I was immediately placed on the blood thinner Eliquis, which I remained on through the end of July. About a month after my initial diagnosis, I was laying on a bed at Owensboro Health, having an ultrasound on both legs. See, there was a possibility that I had developed more clots and we needed to make sure I hadn't. While the ultrasound tech wasn't allowed to give me the results, I was able to walk out of the hospital that day. A DVT is considered an "emergency" condition, so I clearly wasn't an emergency. I quickly did the math and determined that my clot had dissolved and my legs were free of them. The official test results confirmed it. I had cleared that COVID hurdle. There are some I am still traversing.
I tested positive for COVID-19 on Tuesday, December 29th, 2020. Honestly, I knew I had it when I walked into the Deaconess Clinic on Hwy 54 to get that test. I was aware of the most common presenting symptoms and I knew that I had a bunch of them. What I didn't know was how drastically it was going to change my life and how I now feel on a daily basis.
I documented the first few months of my COVID journey here at WBKR. I knew it was important to share my story. After all, until December 28th, the day I broke out into cold chills at the Owensboro Museum of Science and History, I was a perfectly healthy human being. As a matter of fact, I'm the guy who could and would always proudly proclaim that "I never get sick." That was the truth, for the most part, until I got COVID.
What has happened since has been an nightmare, a true test of immunity, resolve and patience. Yes, I certainly feel better than I did on New Year's Eve, when I sat perfectly still for 36 hours because I was experiencing "fizzing," the sensation that all the nerve-endings in your body have been set on fire. It was torture. And, sure, I feel better than I did the day I was told, "Oh, I see it! You sure do. You have a blood clot."
But, for whatever biological and viral reason, I am a COVID long-hauler. Long COVID (as it's called) is real and I apparently have it. A recent study of various long-haulers (by the Office of National Statistics in England) revealed a list of incredibly common and familiar symptoms. That list was published and shared by the National Health Service:
Extreme tiredness (fatigue)
Shortness of breath
Chest pain or tightness
Problems with memory and concentration ("brain fog")
Difficulty sleeping (insomnia)
Pins and needles
Depression and anxiety
Diarrhea, stomach aches, loss of appetite
High temperature, cough, headaches, sore throat,
Changes to sense of smell or taste
I have more than half of those lingering symptoms listed. For me, my biggest struggle is with tinnitus. Since being diagnosed with COVID-19, I have been stricken with persistent and sometimes paralyzing ringing in my right ear. I was referred to an audiologist and went through a battery of hearing tests and exams. My hearing is actually perfect, but the ringing and pain are sometimes incredibly severe. I have often told people that the best way I can describe it is this- it sometimes feels like someone is stabbing an ice pick into my ear. There are nights when I sit on the couch on at home and lay with my right ear pressed against my right hand. Quite unfortunately, the ringing has now surfaced in my left ear too. It isn't as pronounced or as relentless as it is in the right, but it's there and distracting and painful.
About a month after my COVID diagnosis, I shared a story about COVID brain/fog. There's no doubt that I was suffering from it. My brain was chaos. I couldn't remember anything. I lost the capacity to do simple math in my head and I had to keep a paper and pen with me to help organize what I needed to do. Since that time, that symptom has lessened (thankfully), but there are occasional days that I cannot concentrate on anything. It's hard to fully describe, but here's my best attempt. In those moments, when I feel completely off, it's like my brain has been split into two parts. I can literally sense the right side of my brain wanting to work, but I can't sense the left side at all. I can find the will to think through things, but I can't find the way to actually do it. I have made a career (and life) out of constantly spinning lots of different plates. On those days, thankfully just a handful now, I have trouble spinning just one. That effect occasionally resurfaces. When it does, I feel helpless. Useless.
The heart palpitations have subsided but, for months, they were real and startling. Very early on I made a commitment to myself to battle through this. I have remained active- playing tennis, riding my bike- in an attempt to stay physical and refuse to let the way I feel stand in the way of how I want to feel. But over the course of the last four to five months, there have been times when it's felt like my heart has just completely fallen out of sync with the rest of my body. Jim Johnson, one of my tennis friends, has seen me, several times, literally stop in my tracks because my heart rhythm has been interrupted by random hiccups in the normal beat. I never experienced this before COVID.
My mom, who was diagnosed shortly after me in late December and has had long-hauler symptoms too, called me last week to ask if I was experiencing weird smells. As it turns out, she has started smelling things burn. Crazily, I have too. In fact, two different nights in the last week, I have woken up in the middle of the night convinced that something was on fire. This random smell hits out of nowhere and is so strong that it takes massive amounts of evidence to convince me of the contrary- that nothing is on fire and it's just me. My mom and I have swapped notes and we agree. The smell is hard to pinpoint, but is something akin to a combination of ammonia, burning wood and charcoal. Think of a marshmallow roasted on a stick over a raging industrial fire. I know that sounds weird, but that's what I smell. Oh, and then there's the random stench of sewage. That odor hits out of the blue sometimes too.
One of the symptoms on the Long COVID list is interesting to me, because I am experiencing the polar opposite of it. I have not suffered bouts of insomnia at all. What I am experiencing is quite different. There's no other way to describe it accurately, but I am sleeping like I'm dead. I will wake up convinced that I have been asleep for eight hours, but discover that I have only been asleep for an hour and a half. I do this multiple times a night. When I fall asleep, I fall hard and deep and it takes me incredible amounts of time to wake up and get with it. This just isn't me. After all, I am a "morning guy" and the show must go on. I have worked on the WBKR morning show for seventeen years. Historically, I spring out of bed ready to go. But I don't anymore. When I wake up each day, I feel like I am crawling out of something far deeper than sleep. I feel like I am crawling out of my own casket.
That sleep conversation is probably the best way to segue to this. I look back over the nine months and, many times, it's been a nightmare. I think back to the night of the Puzzle Pieces Lip Sync Battle, which Angel and I emceed for the fourth consecutive year. It was on Saturday, May 1st and I showed up and gave it my best 50%. That's about all I could muster. Angel and I traditionally perform an opening number that sets the stage for the night. I didn't have the strength to rehearse one this year. I was honestly surprised I had the strength to even host the show. The crowd didn't know this, but two hours before that event, I was sitting in a chair in the middle of my kitchen in tears. I had started losing small chunks of my hair (another COVID side effect) and Kevin had to shave down the sides of my head and cut the rest to mask it. The last place I wanted to be was at the Owensboro Convention Center around hundreds and hundreds of people. I didn't have it in me and I knew it. As I emceed that night, I couldn't feel any sensation in my right leg except for burning, excruciating pain. Random joint pain is a very real and painful COVID symptom. I was plagued with it that night, but I tried to smile and mentally limp my way through it. I came home after the Battle knowing that I had just been through an arduous internal one of my own. I had done just enough and that "just enough" was all I had.
Earlier this week I told Kevin that I wish I could feel like I did December 27th of 2020. That was the day before my very first symptoms started. I haven't felt "normal" since. Every single day I feel like there's something wrong. I said this before, but it's true. I can literally feel COVID working inside of my body. I may not be able to precisely identify what it's doing, but I can feel it doing it. As I type this, my right ear is completely full of pressure, as if someone has taken a brick and hit me in the head with it. This is the randomness we long haulers struggle with.
But I suppose I am grateful it isn't worse. Two months ago, one of my closest childhood friends died. He got COVID and his heart was never the same. It killed him and he left behind a wife, four kids and an even bigger extended family of friends and servicemen and women. Also, I have been following the absolute trial of my college friend Michelle's husband, who was in ICU for over three months. Her daily account of their battle with COVID has been a gripping study of the atrocities this virus commits. This weekend, another college friend, Laurie, is hosting a celebration of life for her husband Mitch, who passed away a few months ago after a months-long battle with COVID. This is a plague, a curse. Don't believe it? Ask them. Ask me.
I keep watching our local number of infections grow and the death toll rise, alarmingly, in the Green River District. Chances are you know some of those COVID casualties personally. I certainly do. Chances are you likely know someone who survived COVID, but is still dealing with symptoms. I'm one of those people. I'm friends with a bunch more of them.
I realize there are folks out there (some of whom may be reading this) who still don't get it. They're refusing the vaccine and refusing to wear a mask. They're convinced they are invincible. Well, they're not. And we're seeing that play out profoundly in local statistics shared by hospitals around our region. It's maddening and saddening.
Look, I got vaccinated the first week of March because I know my body can't go through this again. I will get a booster shot as soon as I get a green light because I know my body can't endure this again. The thought of battling through a second COVID-19 infection is horrifying. This from a guy who isn't afraid of anything.
But the brutal truth is this. No one knows how they are going to react to a COVID-19 infection. I never, in a million years, would have predicted that my experience with COVID would be what it was and continues to be. My life is completely different than it was nine months ago. I hide it exceptionally well, but I can assure you that I don't feel like the Chad I was before December 28th of last year. This Chad misses that one. I hope, someday soon, I'll feel like him again.