Nothing is Mild About Long Covid

Gardening in late spring while many flowers begin to bloom in shades of stunning yellows, pinks, and blues, I found my way back to the feeling of home. Planting always brings me back to a grounded core, to the place of peace within my own spirit. While planting some marvelous day Lillies in early May of 2020, I noticed that my fingers were pruning, as though I’d just taken a nice, hot hour-long bath. That’s strange, I remember thinking. That’s never happened before...Little did I know that even more peculiar symptoms were on the way.

About 6 weeks prior to this lovely spring day, my son fell ill. Overall, it was an unremarkable virus for him aside from the fact that it made him extremely fatigued. I thought little of it and continued on. Two days later, I began to run a low-grade fever and had an incessantly runny nose. By the time night came, I was incapacitated, feverish, and in monumental pain from body aches and sharp aching in my femur bones. I took ibuprofen, went to sleep at eight in the evening, and woke up 12 hours later feeling terrible. Thankfully, the worst was only 48 hours long, but I remember feeling quite fatigued and unable to workout until six days later. Even then, I could only do about half of what I was used to doing. Still, I didn’t want to believe it could be covid. How could it be? Everyone around me, including the doctors, said it would be inconceivable.

The news cycles on my third day of infection were frightening. I became ill on a Wednesday, schools were cancelled effective that Friday, and the country went into a shut down by Monday. Though I hoped it wasn’t covid, on the second day of my illness I called the doctor for the then brand new covid test.

“Hello, how can we help you?” a voice said on the line.

“Yes, I’m sick and I am having symptoms of covid. I doubt that’s what it is, but I wanted to at least call,” I said.

We chat for a few minutes. It’s determined that because I do not have a fever over 101 degrees (I never do) and I do not have chest pain or shortness of breath that I do not qualify for covid testing. A flu test is also not offered, as covid has the entire office suffocating in calls from frightened patients. I hung up and in my mind, that was that. Even if I was sick with this covid virus, it didn’t seem too bad.

Right as I had started to improve a bit, my husband became ill. His first symptom was a low grade fever. A few hours after the fever started, his employer notified him that he had a potential covid exposure and needed to get a covid test. Feeling alright, but a little tired at the time, he found a place to have a covid test administered and he also had a flu test. Meanwhile, as the results were forming, his temperature spiked as he ached all over, including sharply in his legs, just as I did. Identical symptoms popped up in comparison of our illnesses.

As I continued to improve, and even feel pretty functional by day four, my husband continued to decline. His covid test came back negative, but so did his flu test. Months later we would find out that the early covid tests were only about 25% accurate - meaning we couldn’t trust his negative result. In the moment, we continued onward, relieved that we didn’t have this terrible new virus taking the world by storm. However, our relief didn’t last for long. A week went by and me and both kids had already had the virus and cleared it, returning to our normal lives, but my husband still struggled. Unable to return to work because he still had persistent fever and fatigue, he worked from home. Each afternoon he’d become exhausted, barely able to function. Around the ninth or tenth day he expressed that he felt as though he couldn’t get enough air. Luckily I carry a pulse oximeter with me which is a small device that measures heart rate and oxygen saturation of the blood. Laying down, his heart rate was over 100 and his oxygen saturation was 91. Oxygen saturations below 90 are considered critical and require immediate emergency care. Concerned, I urged him to see the doctor. Long story short, after a few more days he received an x-ray to rule out pneumonia which came back normal. We never found out why his oxygen was so low for several days. It took my husband nineteen days total to fully recover from the virus.

Things seemed to be looking up now that our family had recovered; that is, until I started noticing bizarre new things happening in my body. First, my hands would prune up at random without having been anywhere near water. At first I attributed these symptoms to being a simple fluke or a figment of a very overactive, fear-riddled imagination. Over the next few weeks I continued to notice persistent symptoms, strange and increasing in intensity and frequency. It could no longer be attributed to my imagination.

I’d started feeling dizzy, especially upon standing. A few times I almost passed out. Several times I’d start falling over, having to catch myself on any object nearby. I’d recognized this as orthostatic hypotension brought on by postural changes - I’d experienced it a few times before, maybe once every six months or so, but lately it was happening five or six times per day. Additionally, my period became erratic, with new onset cramping and changes in blood flow. My moods shifted wildly for months along with my fluctuating hormones. I started having random facial flushing where my face would become a bright, burning patchy red, lasting for a few hours then disappearing as suddenly as it came. Then, I started to notice that my hair was falling out. Not falling out like I’d accidentally pulled out a few hairs with a brush, but more along the lines of how one sheds hair after childbirth. Clumps, one after the other stuck to my hands as I was rinsing my hair one July evening. The hair just kept coming out. By the time I finished, I was left with a palm full of hair. Stunned and afraid, I cried. This hair loss persisted for 12 months straight, and still reoccurs each time I get a booster shot.

The changes just kept coming. My hands would sometimes be as cold as ice, with blue veins protruding through the skin. A webbing of purple veins in my thighs like a lattice would appear off and on. The episodes of almost passing out multiplied by eight-fold throughout the summer. One day I almost passed out over thirty times. I remained nauseated and agitated, confused and terrified. What’s happening to me?

Most shockingly, one of my final symptoms appearing in August were little pinpoint red dots all over my thighs and lower abdomen. This symptom concerned me most, as they did not fade or go away for days and days and actually kept multiplying. In time, the doctor diagnosed them as petechiae, little spots of blood under the skin from bursting capillaries. After months and months of testing, they still have no idea why I get them. Another symptom that I believed unrelated until now was vision changes. Shortly after the appearance of the red dots, I had blurred vision at times with scratchy, dry eyes later diagnosed as chronic dry eye and blepharitis. As time continued, I always feared that with thewith the presence of each new month what debilitating symptom it would bring.

As a new wave of symptoms would emerge I would tell my friends, my family, and anyone who would listen. I desperately wanted someone to speculate with me, to help me figure out what was happening to me. I felt so isolated, so lonely in this dark place of the fear of the unknown. The worst part was that almost no one would acknowledge the possibility of long-covid. Many people dismissed me, saying that covid couldn’t have possibly been in the area I lived in, as it was a rural community in Kentucky. The more I tried to reach out, tried to gain traction into understanding what was happening to me, the more people wanted to dismiss my pain. Because if it was covid that I had now causing long-covid, that means these very same people could be at risk for a similar fate. My loneliness shape-shifted often, oscillated between utter internal terror and total external rage. Even physicians were hesitant to treat me, as though something unusual were occurring that they were afraid to misdiagnose. Luckily, in August of 2020 my family moved to New England where I gained access to some of the best doctors in the world.

I was referred to several specialty departments including cardiology, dermatology, and gynecology to explore my symptoms. To this day I have no concrete diagnosis. All of my heart testing came back normal, with no longterm damage and nothing concerning. Eventually, cardiology officially diagnosed me with orthostatic intolerance after extensive investigation, and said it’s possible I’d been dealing with POTS (postural orthostatic tachycardia syndrome) as well. The reason for the more vague final diagnosis comes from bureaucratic caution in the worldview of healthcare.

“Whatever they put in your chart, it’s in there. You’re stuck with that,” one doctor said. I understood what she meant, but to me, that’s just indicative of an inept and struggling healthcare system (a topic for another time).

On the gynecological side, there’s ample evidence to suggest I have issues but none they can definitively link to long-covid. I have experienced gynecological issues since I started puberty, so it was no surprise to find that the issues were still occurring, but I know the virus had made it worse. I was diagnosed with adenomyosis and benign functional ovarian cysts, both pre-existing but aggravated by covid.

The dermatological diagnosis was the least clearcut. In this case, both doctors flat out said they have no idea what’s causing my issues. Nor does my general physician. The only evidence we gained from these appointments was that I have new onset chronically low iron and ferritin levels. They believe this might explain the pinpoint red dots on my thighs and abdomen, but not entirely because my blood platelets were within a normal range. Four doctors and no solid answers.

The dentist had no answers either, as my oral health had sharply declined. In a year I developed gingivitis and five cavities. I’d never had gingivitis (outside of a weird pregnancy gingivitis) or more than one cavity every couple of years in my life! The new dentist did nothing but shame me, blame me, and prescribe a prescription strength toothpaste.

Naturally, my pre-existing anxiety, depression, and post-traumatic stress disorder were all highly aggravated by the culture surrounding covid both in the news and from the medical perspective. Repeatedly being invalidated, dismissed, unheard, and gaslit only ignites those mental health issues. Not receiving answers only feeds the insecurity of the unknown and not having a tangible diagnosis. The stress of being forced to deal with yet another scenario in which you’re unsafe and aren’t believed is the most devastating piece of this horrid covid puzzle. Finally, as I predicted, the doctors recommended I see a psychiatrist.

The goal was to help through administration of medication, to ease my chronic anxiety about my new chronic disabilities, but I questioned how this was fair. How is it that I’m the one being asked to be mentally medicated when no one acknowledged that I even had a disability? Why wouldn’t anyone validate that I wasn’t crazy and that it was indeed the world that was crazy operating in a pandemic for which it was woefully underprepared? I knew this did not feel right to me. The psychiatrist recommended a tranquilizer, an SNRI, and continuation with therapy. I politely declined, knowing in my bones that this wasn’t a chemical imbalance, but an egregious mistake based on a principle of making humanity docile to conform to a world of mayhem.

Twenty-two months later the important things to communicate are that we must validate each other’s experiences in this unprecedented time, we must acknowledge and grieve the life we once had and the life we thought we’d have in the future in order to continue onward, and we must acknowledge the journey millions of people have back to their best self and society must adapt.

Long-covid in my case has been clinically ‘mild’. I’ve been told by several doctors that I’m one of the ‘best case scenarios’ for recovery. Let me be very clear - what may be mild in a clinical sense, as in a ‘you’re not going to die or be physically harmed’, is not mild to the newly disabled person at all. Long-covid has undoubtedly changed my life for the worse. It has debilitated me and stolen from me the youth and health we all take for granted.

For almost 15 months, I couldn’t stand up without passing out multiple times a day. To this day, I have to stop and sit down, regardless of if it’s in private or public at say the supermarket, for instance, in order to prevent passing out. I am no longer able to squat, and must sit to do tasks like grabbing items from a low shelf, picking up the floor, or organizing. I have a regimented, pages long list of items, exercises, and dietary restrictions that I require for aid in management of my disability. Even if I’d like to get a job, it’s become extremely difficult, as I cannot meet the basic requirements on the job description such as squatting to lift heavy items, standing for longer than 30 minutes at a time, or being able to be outdoors in the elements for prolonged periods (heat makes me at risk for fainting). The main issue is that my autonomic nervous system can’t regulate itself well enough for me to be considered ‘able’. None of this takes into account the mental and emotional anguish of being thrust into dealing with an invisible disability in an ableist society in which no one knows anything about and provides no solutions or supports in order to cope.

Days spent resting and crying in my bed were days that should’ve been reserved for my children. My babies would beg me to play, beg me to just leave the bed for a moment, but as soon as I tried, I couldn’t. I should’ve been playing with my kids but all I could do was cry. Not all days were like this - some days were almost normal again. The trouble with chronic illness is that you never know when you’ll get a good day and when you’ll have a bad one. The kids missed out on so much of their mother that year, a year in which they also desperately needed her love, guidance, and support through an awful, fearful, isolating time.

One day I came down the stairs and midway through, my knees buckled as my vision began to quickly go black. I leaned backward, knowing if I went forward I’d be finished. As I leaned, I thrust my arms toward the banister, hands grasping for the only viable nearby stability. My hands smacked hard onto the wood and I held on tight as I gently lowered my bottom to the step directly underneath me. As I sat, I hugged one of the wooden banister supports until I felt steady again and my vision returned. Crisis averted I thought, this time.

The mental and emotional overwhelm of navigating a new body with new, very prominent obstacles and inadequate support in a new city was the most excruciating part of the experience. Even when I did talk to the few I could, they didn't understand. It was one of two times in my life that I truly felt utterly alone.

To add to the overwhelm I’d been feeling, in order to maintain my body with my pre-existing diagnosis, plus the new diagnosis after this experience, the doctors plans required that I:

• Drink over 100 ounces of water a day

• Practice Yoga 30 minutes a day, 5 times a week

• Exercise a minimum of 35 minutes a day, 5 times a week

• Eat excess sodium with every meal

• Wear compression socks daily and compression pants as needed

• Continue physical therapy for joint dysfunction related to hormone imbalance as needed

• Continue physical therapy exercises at home indefinitely

• Meditate daily beginning with 10 minutes working upward

• Continue therapy as needed for anxiety

• Sleep a minimum of 8 hours per night

• Eat healthy, gluten free foods that are iron-rich

• Take Iron once every other day

• Stretch 20 minutes daily

• Avoid squatting completely, standing for longer than 30 minutes at a time, and lay down anytime I become light-headed (even in public)

• Engage in self-care strategies including therapeutic massage

• Avoid excessive heat, overheating, and hot baths or showers

• Moisturize two times daily

The above requirements aren’t everything that I do, but a minimum of what I’m supposed to follow in order to maintain a somewhat ‘normal’ lifestyle. As one might begin to notice, the treatment plan far exceeds the minutes I have in a day when you combine the responsibilities of running a household, motherhood, volunteer work, and any part-time or full-time job I might be doing at the time. I can no longer work without accommodations because I cannot squat or stand longer than 30 minutes at a time due to orthostatic intolerance. So far, I haven’t found any jobs who will accommodate the needs listed in this treatment plan.

As I evaluate my life now while most days not having any clue what in the fuck to do, I recognize and accept that I am disabled. I no longer mentally limit my activities due to fear of passing out or fear of the inability to participate like able-bodied individuals. I simply do my best to enjoy the moment, accepting that my reactions to my perceptions are all I have within the realm of my own control. I still grapple with the physical challenges that come with long-covid, but it’s the emotional overwhelm that’s hardest. Over-stimulation is unbearable to me now, as is too much multi-tasking. I still have a lot of brain fog and general fatigue from time to time. But nothing compares to the myriad of emotions I feel when someone gets on TV or the internet and says that covid isn’t a big deal. Or, when they say, “Well long covid sucks, but at least you didn’t die.” Denying anyone’s right to the process of grieving, no matter your perception of their situation, is cruel. I can be grateful to be alive and also feel pissed off that our government isn’t doing enough to protect us. I can feel compassion to all humans being forced to weather this monumental pandemic while simultaneously feeling deep anger toward anti-vaxxers who refuse to take accountability for their contribution to death and destruction as this virus rips through the world population. As a complex human being, I am capable and allowed to fully feel my whole spectrum of emotion regarding my disability and my views on the pandemic.

Several of those in my life who were skeptical of my suspicions of a long-covid diagnosis have since accepted that it’s my most probable diagnosis. While most of mine is strictly involving autonomic dysfunction, hundreds of thousands of people out there struggle with even more debilitating realities. Many crave connection and understanding, validation of their concerns and anxieties and fear of the unknown. Each longs for someone to listen. The reality of this journey is that it’s a lonely and terrifying one, with little answers to be found for years to come. The least we can do is validate their experience. The least we can do is allow them their feelings.

If we really wanted to sustain meaningful change, we could challenge the rampant ableism peppered throughout American society. As I am not well-versed in combatting ableism, I implore you to google the term and follow leaders in the disability community, such as Imani Barbarin at crutchesandspice.com.

Long-covid isn’t mild. Any covid isn’t mild. The repercussions of this virus on our world have yet to been revealed entirely. We all sit in limbo as the trauma of covid permeates our lives. Only when the trauma ceases and our grief is allowed to begin will we perfectly privy to the reality that covid was anything but mild.