I’m sharing this in part because I feel I owe everyone an explanation for dropping off the face of the earth. Also, it’s possible that somewhere in here, I’ll have information that will help someone who is just beginning their struggle with post-covid symptoms. This will be a long post as there is much to cover.
In March of 2021, I fell ill. March 20, 2021, to be exact. How do I know the day so well? Aside from repeating it to more doctors than I ever want to see again, it was the day my life unraveled.
I woke that morning to a splitting headache. When I tried to draw in a breath of air, it felt like someone had replaced oxygen with burning chemicals. I didn’t have a fever when I woke up but quickly developed one. I went to the ER, where they tested me for covid, said I was fine and sent me home. I was back in the ER three times over the next five days. Breathing treatments didn’t help, and by day 5, I had begun to cough up bloody mucus. The last time I was there, the doctor on duty did a chest x-ray and stated that all my symptoms added up to me having Covid-19. He also let me know that the tests were returning about 40% false negatives at that time, so they couldn’t be trusted. I was sent home to recover as my oxygen levels were “acceptable” at 92% and given steroids to help fight off inflammation.
I lay on the couch for two weeks, alone, scared, unable to do much for myself. When I tried to walk, I fell or bounced off the walls. One time I fell, hit my head, passed out, and then after I woke, I ended up spending the night heaving my guts out. Odds are I had a nasty concussion, but I wasn’t clear-headed enough to think about needing medical attention, and I didn’t want to call anyone to come over and risk spreading the plague.
I started to recover about three weeks later, went back to work for a couple of days, and then the third day, everything came screaming back, but worse. I went back to the ER. They still didn’t think my O2 showing at 90-91 was an issue. (To be fair, the hospitals here were overcrowded with Covid patients, and Covid has changed the way doctors view O2 levels in patients. When people are getting hospitalized who have 75%-80% oxygen saturation, my 90’s are pretty good.)
I had raging fevers that hit out of nowhere from this point forward. I’d be fine, and then my temperature shot up to 103F/39.4C. Fever reducers had little to no effect. I couldn’t breathe unless I laid on my chest, and sleep happened in spurts of no more than an hour to an hour and a half before I woke coughing up the nastiest stuff I’ve ever seen.
The cough eventually subsided, well, at least enough to make it stop feeling like I was breathing boiled chemicals. The pain in my ribs, joints, muscles, and head did not. Nor did the fevers. I recorded fevers on a website someone pointed me to, and my doctor was horrified. Repeated attempts were made to get me hospitalized, but it just wasn’t possible thanks to the extent of the pandemic.
With options running out, I was finally referred to an infectious disease specialist and a local post-covid clinic. The post-covid clinic was really more of a facilitator than a help. I’ve heard they’re more effective now. At that time, I used a cane to get around at home and a walker with a seat if I left home. I quit driving after nearly passing out at a stoplight facing 4 lanes of cross-traffic.
The infectious disease doctor was, in a word, useless. She ignored CDC guidance that clearly states a negative test is not proof that a patient does not and has not had covid. Instead, she stated in her notes that “endorsing this belief is causing the patient more harm than good.” Well, I hate to tell her, but literally every test she ran was negative – and she tested me for things I could have picked up on vacations to places I haven’t seen in over a decade! Also, every other doctor I’ve seen has taken one look at the symptoms and said, “Oh, this is post-covid. I’m so sorry, you long-haulers really are getting the worst, and we don’t have a lot of answers yet.” How many other doctors?
- 2 Primary care doctors
- 1 Psychiatrist (brain fog, which I’ll get to in a moment, is a terror)
- 1 Physical therapist
- 1 Cardiologist
- 1 Pulmonologist
(Still waiting to see the neurologist, but guess which new division of the neurology department I’m being sent to.)
The fevers finally let go in late July/early August. As they subsided, so did the brain fog. The brain fog left me barely able to string words together. Conversation, the ability to write or read, even following a tv show or a movie was impossible at the worst of it. I also had memory gaps. Things like the names of streets I traveled daily pre-pandemic, names of coworkers, even words I use commonly – they were completely absent from my mind. An MRI was ordered. I have fun new scars on my brain now. We also know that they’re new because I had an MRI done just over a year before all this. I still couldn’t seem to function.
The brain fog was terrifying. I was unable to remember the most basic things, like names of close friends. I struggled to put words together in a sentence. I couldn’t watch any TV that required me to follow a plot. (Hulu now thinks I’m a fan of the Real Housewives series because of that.) Even after the fevers broke, I had massive gaps in my memory. One day that I recall well was when a friend took me to run some errands. I was trying to tell her to turn onto a street I’ve driven almost daily for 12 years. I could NOT recall the name of that street. The more I tried, the more scrambled I became. I would be in a conversation with someone and stop – not mid sentence, but mid-word – absolutely confused about what I’d been trying to say or what our conversation even was.
Doing my own dishes would usually take me 15-20 minutes, including scrubbing the kitchen down. I could manage loading 2 or 3 items at a time before needing to rest for up to an hour. Cooking, something I’ve enjoyed immensely, was impossible. I couldn’t walk the dog on my own either. Any activity would result in an immediate fatigue crash that would put me down for at least the day. I couldn’t visit family, and had even gotten to a point where I spent several days in my bed because I could barely manage to get myself to the bathroom and back. My sleep went from 7.5-8hrs a day to 14+ during the most challenging times of those months.
Thankfully, by the end of September, the breathing issues seemed to have settled, I had insane vertigo when walking, but the fatigue wasn’t as awful. I tried going back to work in October and lasted less than a month before the fatigue crash used all the time off I was allowed and put me back on medical leave. I think the first clue that I wasn’t really ready for that step was that I couldn’t remember anything about a job I’ve held for almost 9 yrs. I worked with my doctor through the holidays and returned to work in mid-January. My memory was working again by the time I went back, much to my immense relief.
I still fight the fatigue, though it’s nowhere near as terrible as it was. I was working with a physical therapist to slowly increase my exercise tolerance. The brain fog only hits when the fatigue is especially bad. I have to learn about “pacing” and “living in the envelope,” which are skills used to manage life with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. New data shows that there are multiple reactions in people like myself, who have an immune system attacking healthy organs. Unfortunately, we don’t have a cure at this point.
I fired the physical therapist last week. He pushed me into a 2 week fatigue crash. I can’t begin to handle that kind of trouble. My doctor has also stated, if it happens too often, I’ll get worse and becoming disabled will be a matter of when, not if. I will manage the rest of the recovery without the risk of permanent damage and/or job loss.
As I approach the one-year mark, I wonder if my doctor will transition the diagnosis from post-acute sequelae of SARS-CoV-2 infection (the official name for post-covid/long-covid) to CFS/ME. I still have a ton of concerns about my ability to continue to work on my goals as a writer and the plans for my day job career. I’m not stable enough to trust my body or my mind to work the way I need them to, and that has become the most terrifying feeling I’ve had in my entire life. Most of the time, I’m alright, but when I’m not, wow, I’m really just not.
I haven’t given up and won’t give up. I grew up in a family where the oft-used line when facing adversity was, “What am I supposed to do? Lay down and die?” As a result, I might be too stupid to know when to throw in the towel. I just assume “lay down and die” isn’t an option, and so I keep trying to find ways to climb out of whichever hole I’ve landed in.
I do claim my steps toward recovery. Each one is a tiny little rainbow in my heart, telling me the storm is finally passing, and I’m still here. I’ve defeated the brain fog, and I can write again. I also earned my Lean 6 Sigma Green Belt certification in December. (Had to keep the brain engaged while waiting for the body to catch up!) As I mentioned in the update for Wednesday, I made progress on my writing.
I don’t need a cane or a walker! In fact, I can walk about 1.5 miles/day now. Not all at once, mind you, but doesn’t that beat walking about 1.5 feet before losing balance and feeling like the planet was trying to toss me into space?
I can even walk the dog, do my own laundry, go grocery shopping, and I’ve started cooking again. I won’t be inviting anyone to dinner for a while. I lost some of my skills, and well, I’ll eat what I cook, but I won’t inflict it on anyone else just yet!
I’m back at work! I am figuring out how to balance my continuing physical therapy with the demands of the job, but it’ll settle out soon, I believe. Thankfully, the company I work for has been fantastic throughout this process, and my supervisors are understanding.
These steps forward are things I thought I’d never have in my life again. Each one is a weapon against the dread that I will never fully recover. Even if I don’t, I just have to learn to continue living within those limits. Once I have that down, I might be able to expand the boundaries now and then. If I can’t, at least I’ll have more than I thought I would regain.
As a final note: Please, get vaccinated. People who have been vaccinated are much less likely to develop these symptoms. If you don’t do it for yourself, do it for your family. I never want to be in a situation where my kids, who are raising their own young children, suddenly have to worry about whether I’ll need to move in with one of them. They’d take me, but the point is, they shouldn’t have to, not before I even turn 50. Get the vaccine, so you don’t have to worry about being hospitalized or losing your life. Get it so your family won’t have to go through anything like mine has in the past year. I am fully vaccinated and have the booster now. I wish it had been available to me MUCH sooner.