Amanda, a 46-year-old who was generally healthy prior to contracting Covid-19 last year, now gets lost driving to places she goes to every week. And her lungs are so congested that she feels like she’s drowning until she coughs up handfuls of foamy liquid. Her vision and hearing have been impaired and she has been diagnosed with post-viral POTS (Postural Orthostatic Tachycardia Syndrome). She has a masters In English and is a published writer. But now she can no longer hold a job.
It seems that, at this point, most of us have in some way been touched by the Covid-19 virus. And we are all familiar with the numbers - over 41 million confirmed cases and close to 700,000 deaths in the United States alone. But hidden in those figures is another statistic - one that has baffled the medical community and has left many of us struggling to find answers.
I’m referring, of course, to “long-haulers” - those of us for whom the effects of Covid-19 simply will not let up.
Most people - except perhaps those who live with us - can’t believe we’re still sick after months, a year, or even longer. For me, it’s been 17 months.
I can’t deny that some of us do have good days (or if we’re really lucky, a good week or two). On those days, we feel like it’s finally over. And we start trying to live normal lives again. But we’re inevitably knocked flat by what we call a “flare” if we catch a simple cold, are somehow physically injured (for me it can be something as innocuous as a bug bite), are exposed to stress, are out in the heat too long, or simply “overdo it”.
What exactly, you might ask, is a “flare”? The worst ones for me go something like this - with no warning, I get up to walk and my legs fold under me, after which the intense trembling begins - trembling so bad that I’ve broken teeth and bruised myself. These “episodes” are always accompanied by a very rapid heartbeat and the inability to think or speak coherently. The worst one I had lasted 35 minutes. Then the week or so afterward is spent recovering from it, during which I feel exhausted and beat-up.
Even on good days I struggle with varying degrees of brain fog, short-term memory loss, various aches and pains, tachycardia, and insomnia - insomnia so bad that no sleeping aids help at all.
It is believed that 10 to 30% of those who had even mild symptomatic Covid are now long-haulers. With 41 million Americans having contracted the virus since its inception, there may be as many as several million of us in our country alone.
For the record, Covid-19 is not just a flu. It is much more insidious. And for many of us, it does not go away. I’ve reached out to others whose lives have been upended by this virus. And they have given me permission to share their stories. These are people who not only want answers, but they desperately need to be heard and understood. Most of all, they are people who want others to never have to suffer as they have.
Tanya is a published PHD who has suffered significant cognitive, short-term memory and vocabulary loss. She can’t organize her thoughts, remember or determine sequences, make decisions, or keep a train of thought going. She also - like most, if not all of us, suffers from chronic fatigue.
Both Amanda and Tanya have been offered consulting or writing work but they do not have the confidence that their brains will cooperate enough to commit to it. I share this problem as well, so please bear with my obvious short-comings as I attempt to tell the rest of our stories.
Jennie is going on 10 months as a long-hauler. She got Covid in early December at the High School school where she used to teach. She says that she adored her job and tried to return to the classroom on three separate occasions only to literally collapse all three times. So she was forced to resign. She attended her son’s college graduation in a wheelchair. “I’m just not the me I used to be”, she says, “And I want her back!”
Lauren had both the (original) Alpha strain last summer, for which she was hospitalized, and the Delta variant this summer. She contracted the virus from an outdoor dining patio because she had limited exposure to others and always wore a mask indoors. Like all of us, she is exhausted and yearns to live her life again.
Brandon is 38 years old and was unable to write out his story. Instead I had the privilege of talking to him over the phone. Before contracting Covid in March of 2020, he was an amature boxer, an avid drag racer, and was working toward a PHD in Kinesiology and Physical Therapy. He was a massage/physical therapist with a clientele of around 200 people. His initial symptoms were rather mild - a cough, shortness of breath, and muscular pain. But around day 10, his world turned upside down. He began struggling with back and neck pain, brain fog, fatigue, tremors in his hand, and headaches so bad that he was vomiting and went to the hospital 3 times, hoping to get some relief. He was essentially our guinea pig, undergoing just about every medical test short of a spinal tap to get to the bottom of his often debilitating symptoms which also included severe constipation and - for the first few months - tachycardia. It was discovered that he had, among other things, a vascular injury to his brain and was diagnosed with Macrophage Activation Syndrome, which is indicative of Lymphoma. He was also diagnosed with POTS, although I was thrilled to discover that, after a few months, those symptoms (very rapid heart rate upon standing) have stopped. Brandon also believes many of us are suffering from Gastroparesis, which is characterized by damage to the Vagus Nerve, which helps manage the complex process in our digestive tracts. Brandon’s “good days” last for only 2 to 3 days at a time before he is hit with a flare that escalates as the day goes by. Asked if he felt supported by and understood by his friends and family, he responded with an emphatic, “Not at all!”, with the exception of his fiancee, whom he plans to wed next May. Since contracting Covid, Brandon has been unable to work or to complete his PHD program.
Judy is 9 months into her long haul. She came down with Covid on Thanksgiving and was already wheezing with her heart racing at 135 beats a minute when she went to the hospital ER later that night. She was put on Singulair, antibiotics, and was given an inhaler. A week later she was in a wheelchair, unable to walk. She was admitted to the hospital and started 5 days of Redemesvir infusions. While in the hospital, her oxygen dropped to 70%. (Note that a person is uncomfortable and considered in distress if oxygen saturation drops below 94%, Mine has dropped into the 80’s and, when that happens, I feel like I’m drowning). After a week, she was allowed to go home. She struggles now with severe tachycardia, headaches, body and joint pain, memory loss, fatigue, stomach pain, difficulty reading, and the inability to concentrate. Needless to say, she also lost her job of over 30 years as an MRI and CT tech. Before Covid, she could work 12-hour shifts and then come home to do 45 minutes to an hour of cardio.
Christy is 39 years old and admits that her actual Covid, which she contracted in April 2020, was not bad. A few days of fatigue, mild fever, coughing, and chills. But the long haul portion of her illness has been debilitating. Her brain fog is awful - she can’t remember words she learned in elementary school. She also suffers from bouts of fatigue, heart palpitations, depression, anxiety, and “super itchy skin”. Just recently, she has begun to feel dizzy and queasy. She adds that she got Covid before masks were made available to the general public. (I think many of us can relate to that! Many long-haulers also came down with the virus before general testing was available)
Cheryl is 66 years old and had type 2 diabetes, high blood pressure, and asthma as pre-existing conditions. When she contracted Covid, her fevers were so high that they considered putting her in an ice bath. She was also hallucinating and was given Redemisvir. Now, months later, she suffers from severe headaches and her breathing is so poor that she can’t say more than a few words without gasping. She also has an unrelenting sore throat and dry cough. And every so often, her glands swell up. As you may guess, she is having difficulty keeping her sugar under control, as well.
Susan is a licensed Optician who has been suffering since July of 2020. And like so many others suffering from long Covid, she is no longer able to work. She’s been in the ER 12 times, including an episode where she was diagnosed with a TIA, during which she could not remember words. Her long haul symptoms started with tremors, weakness, blurred vision, rashes, bruising, and Covid toes. She now suffers from heart irregularities, liver enzyme problems, blood pressure issues, breathing difficulties, anxiety, and insomnia. But the worst symptoms are continuing cognitive issues. She recalled the day she poured her dog’s food into a vase instead of his bowl. And she once stopped at a light while driving and forgot why she was in her car. Sadly, her list went on and on.
I have to agree with her. These types of symptoms are the worst. You feel like you’re losing your mind. More than once I have walked to our neighborhood market only to forget why I went once I got there. A panic rises up inside you when this happens and you feel like crying as your face flushes with embarrassment. An embarrassment that you and only you are aware of as the world, it seems, closes in around you. I think that’s the worst part of what we call brain fog - the feeling of your mind being squashed into blackness as sounds drift away and words slip from your mind.
Lisa Marie has been sick for 17 ½ months. Yes, you find yourself counting the days. She caught Covid as a front line RN. Her worst symptoms now are fatigue and her “poor, struggling lungs”. She often feels like she’s drowning, even with her nightly CPAP. She says it’s a horrific feeling. She’s lonely. She misses nursing, and has no life, no adventures, no real fun. It’s an endless horizon of sickness and sadness.
Evan is also at about 17 ½ months. He’s not sure where he contracted Covid but he works in healthcare and lives in New York, which was the epicenter of the pandemic at the time. He had a mild case but did lose his sense of taste and smell. His worst symptoms now are occasional tachycardia, pain in his abdomen, and ongoing neuropathy in his feet that vacillates between tingling, numbness, and pain. Also, anytime he stretches his arms or legs the wrong way they feel broken for about 30 seconds. After almost a year and a half, he notes that he has still not regained his sense of taste.
Angela has been struggling post-Covid for 18 months. She suffers from “horrendous” headaches accompanied by severe eye pain. For months her headaches were accompanied by all over chills. She also suffers intense pain in her legs, arms, and shoulder blades behind her lungs. It has felt like fire at times. It was hard for her to walk or to stand. And she, like Evan, lost her sense of taste and smell for several months. The lasting impact from Covid, she says, has damaged her, especially her nerves and her veins. And like many of us, she wonders if this damage is permanent.
Azra was first infected at the end of 2020. She developed a pulmonary embolism and was on oxygen. As weeks passed, her health deteriorated. She lost all muscle mass, experienced debilitating arm and leg pain, experienced hair loss, blurry vision, floaters, and brain fog. She used to run but now a 500 meter walk is too much for her. 6 months after contracting Covid, she was re-infected with the Delta virus. That time it was more of a nasal infection, but after 2 weeks, she needed sinus surgery. She had to discontinue her blood thinners when she had the surgery and now her blood is clotting again. 9 months later, it feels like it will never end. She says that even though she survived Covid, it has taken her life from her.
Karla is 39 years old and is a nurse. She tested positive on November 13, 2020. It was rough, she said, but not terrible. So she returned to work. Then in April, her body suddenly felt broken. She was short of breath, suffered headaches and experienced hard chills. She tested positive (again) on April 6th. After recuperating at home, she again returned to work only to begin experiencing intense pain in her leg. She discovered she had deep vein thrombosis. She was put on blood thinners and started seeing an internist and a hematologist. In the middle of May, she began to experience joint pain, headaches, and chills. She tested positive for Covid on May 22nd. And again on July 22nd. Since then her blood pressure has gone as high as 187/127. Tests revealed no damage and she was sent home. Recurring symptoms include blurred and double vision, and weakness in her extremities. Needless to say, she has not returned to work…
Sudden attacks of high blood pressure are something I have also struggled with in the long haul, with it once reaching 198/120. The next day it had dropped to my new “normal” of 102/62. What we experience can sometimes feel life-threatening, yet all too often tests reveal no serious issues and, once the “episode” is over, things slowly return to a semblance of normal again. It can be crazy-making!
Kathie contracted Covid in March of 2020. She’s 65 and doesn’t think her lungs will ever be normal again. She had pneumonia 3 times last year and feels “ a deep level of congestion returning.” She says that the medical care she has received has been ineffectual at best, but she doesn’t know where else to turn.
I think many of us feel this way. But we really can’t blame our doctors. They’re doing the best they can with a huge unknown. The variety and intensity of symptoms we exhibit have stymied them. Many of us have been diagnosed with POTS, but even that seems to miss the mark. Yes, we all suffer from tachycardia, lightheadedness, and fatigue. But when you throw in the other symptoms we’ve dealt with including such things as hair loss, heat rashes, Covid toes, and digestive and sleep disturbances, it isn’t so easy to fit us neatly into that or any other category.
Becca says that she’s been telling her doctors for months that she is dying in front of them. And no one can tell her why. Multiple organs have been affected, including her brain and her heart. She is glad her doctors listen to her in spite of all the frustrations of being a long hauler and hopes that she and they can apply what they’re learning together and share what they learn in the process.
Shelley said her initial virus was very mild, so much so that she questioned her diagnosis. Since then she has developed symptoms consistent with what the rest of us post-covid long haulers have been through and she is unable to work. After 3 months, her Epstein Barr and Cytomegalovirus had been activated and she developed pneumonia which was what really “took her down”.
Charlie is a 27 year-old who used to run 5 kilometers three times a week. Now he suffers from chest pains, excruciating migraines, severe breathlessness, dizziness and exhaustion. He says that if he had known he’d be this sick back in March when he contracted the virus, he would have taken everything a lot more seriously. “But all you heard back then”, he said,” was that if you were young, you’d be ill for a couple of weeks and that would be it.”
Record numbers of young people have now been stricken with Covid-19. And a surprising number of them are long-haulers. On one of the Facebook support sites I belong to (a site with almost 14,000 members who are all struggling with long Covid), a 15-year old is in intensive care with complications resulting from the virus.
Jennifer had acute symptoms in March of 2020. She woke up with a hangover-like headache and a fever of 103 that lasted 10 days. By May, she was experiencing constant chest pain and shortness of breath. Tests showed that she had 90% blockage of an artery that resulted in her needing a stent and 6 new medications. Now her memory comes and goes, her vision has deteriorated and depression can be debilitating. Once upon a time, she says, she was a writer.
Most of us have our “once upon a time” stories. Once upon a time some of us were teachers, some were nurses, and some were lab technicians. Some worked out every day or ran marathons. Some of us volunteered our time helping others in our community. Now we spend our time trying to regain a semblance of what we were before.
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