I Had All The Covid-19 Symptoms, But Did I Actually Have It?
My brush with the global pandemic, the less-than-perfect testing process, and the strange symptoms still wreaking havoc on my body
Wednesday April 1st came and went without much brouhaha, despite a rapid onset of what I figured was just my seasonal allergies. Here in the south, that’s to be expected this time of year. The only odd symptom I had was extreme fatigue. Like, dog-tired fatigue. I couldn’t make sense of that; I’m not one to ever need a nap during the day. But I pushed on.
That day, the remote work I’d tried to accomplish was all done in vain. Every time I tried to focus on my spreadsheet, all the boxes would blur into one another and my eyelids became heavy with exhaustion. Mental fog started creeping in soon after that. I needed to stop. So, I hauled myself ten feet over to the sofa and didn’t get up for the next eight hours. Around 9 p.m. I persuaded my body to move upstairs to the bed, where I promptly passed out and slept through the night.
The next morning, a pounding headache became my alarm clock. It felt the way it might if I had a raging sinus infection. And even though I’d had a full night of sleep, I could barely wake myself up. It was such an odd feeling — like I’d been drugged. I had to pee so I forced myself up and stumbled my way to the bathroom. That’s when I was taken aback, gripped with a coughing fit. A dry, non-productive cough that was coming in spasm-like waves.
That’s when I realized I was sick. Really sick. This wasn’t just allergies.
The cough was also accompanied by wheezing and difficulty catching my breath. I ended up having a few asthma attacks throughout the morning that required my inhaler.
The headache and cough were among the first of my bad symptoms, and the headache was among the symptoms that remained with me for the next 15 days in a row. The cough eased up faster than anything else, but the headache was absolutely awful. Like, one of the worst I’ve ever had (and I’ve had some doozies, including a chronic refractory migraine that put me in the hospital for four days of IV-DHE therapy delivered through a PICC line).
This headache was so profound I could hear it pulsating. I couldn’t fully open my eyes or walk a straight line on day one. I was dizzy and a little nauseous just going to and from the bathroom.
After the abrupt onset of symptoms, I went back to bed and immediately the muscle aches in my legs started, followed shortly after by the chills. Severe, uncontrollable, almost violent, shaking chills. Teeth chattering chills. By then I knew I had a fever, but was too exhausted and ill to get up and get the thermometer.
Keep in mind, all of this had happened in the span of about 12 minutes. The headache that woke me up, the inability to fully awaken, the spasmodic cough and wheezing, the nausea, the muscle aches, the chills, the shaking… the abrupt onset of symptoms, each one making its presence known individually before piling on top of each other like layers of a hornets nest.
By then my husband was awake and getting ready to leave for his early morning part-time job. He works from home full-time, but last summer, took on an additional part-time job in a grocery store near our house. (My husband and I each have a full-time and part-time job — with our oldest two leaving for college soon, we’re trying to sock away as much money as we can.)
He heard me coughing and shaking and asked if I was okay. I don’t remember much after that except for him asking me to clarify my symptoms, and then his telling me, “Martie, those are the symptoms of COVID-19.” Which then led to me curling up in a ball and sobbing like a small child.
My husband is not an alarmist by any means. But the way he said this, with such staidness? It scared the sh*t out of me.
I have an autoinflammatory condition that compromises my immune system. When I get sick, I get really sick. I’ve had quite a few hospitalizations and surgeries. In ‘09, a sudden, acute onset of pneumonia, pleurisy, and sepsis put me in the hospital for 10 days and nearly took my life; when the paramedics arrived and found my fever at 105.6°, they said it was a good thing my husband called 911 when he did, because I likely had only hours — if not minutes — left. The ER doctor later confirmed their hunch and admitted me to the hospital.
So when it comes to my health, we don’t beat around the bush anymore.
While in the hospital that time, it took about five days for my temperature to drop below 105°, and initially, I wasn’t responding to antibiotics. By some miracle, midway through the stay I turned a corner and began slowly improving. But then there was nearly a year of recovery and rehabilitation at home, and to this day (over a decade later), I suffer some of the long-term effects of sepsis. And I have pneumonia to thank for my development of asthma, as well as a vocal hemorrhage (not convenient at all for someone who spent a lifetime performing in musical theatre).
I cheated death once. I don’t want to go there again any time soon.
Regardless, the morning of April 2, I told my husband to go ahead to work. I just wanted to sleep. And I knew that if this was COVID-19, from everything I’d learned about it, there was nothing to be done unless my temperature climbed a lot higher, or I found my breathing becoming more labored or compromised. I also knew my husband would be home in a few hours.
So, he helped me get squared away with medicine, in a routine we’ve become used to: when I have fever I alternate ibuprofen and acetaminophen so that I’m basically taking something every three hours around the clock, until the fever’s gone. Then he left for work and I fell back asleep. I didn’t know that would be the last time I left my bed for the next 15 days.
Over the next several days, the symptoms would come and go in unpredictable waves, sometimes, very short waves. I’m talking half-hour spans. At some points during the day, I’d feel pretty normal. At other points, without warning I’d feel utterly exhausted, weak, and even immobilized. With a strict medicine schedule, I managed to keep my fever at around 100° all the time, but the muscle and body aches persisted with fortitude, making it feel as if my temperature were much higher. And at times it seemed like my body aches were more like bone pain, especially in my limbs.
Perhaps more predictable was the onset of daily fever. Each morning, I’d wake up feeling more or less okay. (But I learned early on not to make the mistake of assuming that meant I actually was better; just getting up to take a shower the first time proved too much and rendered me immobile for the rest of the day and night.) In fact, the moment I got out of bed to do anything, the fever returned, as if it were a ghost lying in wait to remind me — when I was good and awake — that it hadn’t forgotten about me. (And by “got out of bed to do anything,” what I really mean is going to the bathroom or brushing my teeth. That was the extent of my physical activity for 15 days).
This wasn’t like the flu, as some unfounded rumors had suggested. This was more like what I’d experienced with pneumonia, pleurisy, and sepsis.
There were also some strange symptoms, like the fact that I had a very sore throat for one day only. And the fact that throughout the whole ordeal, my vocal hoarseness came and went with no rhyme or reason. And the fact that I had absolutely no appetite for 14 days. I could hear my stomach growl periodically, but had no desire to eat. Nothing looked or sounded appealing, and that’s really saying something because my husband is a phenomenal chef.
Still, I forced myself to eat (my husband made me lots of grilled cheese sandwiches), but everything either tasted like air, or had a faint moldy flavor (for 2 days, I completely lost my sense of taste). But the food was most definitely not moldy. So, eating was difficult, especially when it tasted bad or had no taste at all. I did not, however, lose my sense of smell — something that news reports were saying was yet another bizarre COVID-19 symptom in some patients.
I still wasn’t sure if what I was dealing with was the novel coronavirus or not. And there seemed no way to find out in the first place. On about day four, I called my primary health physician. They were not offering the test to anyone — not even symptomatic patients. They didn’t have the test. This was in early April. They advised me to contact the CDC or HHS. I knew I wanted to avoid the ER like the plague, because if this wasn’t COVID-19, I felt sure I’d get it if I were to end up in the ER.
I tried contacting those health agencies, but I was put into an endless loop of online symptom checkers and automated bots. Of course, no live person was ever available.
On the CDC’s symptom checker, even with ticking the box for being “high risk/compromised immune system,” and being able to tick every single symptom box, I got an auto-response that said only, “Sorry you’re feeling sick. You have some symptoms that may be related to COVID-19. Call a medical provider within 24 hours.”
Well, that was useless, since I’d already called my main medical provider and they told me to contact the health agencies. An endless loop. Almost as if it were designed that way intentionally…
The CDC website gave no further guidance. No information on red flags or potential symptoms to look out for, or even what to do if I got worse, like when (or whether) I should maybe think about going to the ER. So I gave up on ever getting any answer or peace of mind. I decided I’d just “know” if it ever came time to go to the ER.
I began keeping a video diary of my symptoms, because by day 3 or 4, my mental fog (as I called it) was so bad I could hardly recall basic information, like what day of the week it was, or whether I’d asked my husband a question that I literally just asked him. I figured I wouldn’t remember all the symptoms I was experiencing, either. So I recorded myself explaining them each day, or whenever something new seemed to crop up.
By day 4 I had a fairly good grasp on knowing my symptoms. The ones that seemed to never go away were the exhaustion, headache, nausea/diarrhea, and the persistent muscle and body aches.
After four days of this, I added Zofran and Immodium to my daily meds. I finally got a f*cking break from the diarrhea, but the nausea would linger for several hours each day after taking Zofran. Some days I had to take a second dose. Often, when the Zofran kicked in I’d mistakenly assume I was feeling all better. That’s when I’d try to get up and take a shower — only to end up crying and angry at myself, because showering seemed to only trigger more coughing and wheezing — and I kept forgetting this due to the mental fog.
There was also constant weakness and light-headedness to contend with, and a general, all-over “unwell” feeling that I couldn’t quite put my finger on. Not like a stomach bug or the flu. Not like any bacterial infection I’d ever dealt with, or even the serious case of mono I had at age 15. Like something entirely different altogether. I had difficulty keeping my eyes open during the days and found myself napping. A lot. This is really, really uncharacteristic of me. I’m not a napper in any way, shape, or form — unless I’m really sick.
My husband took me to the doctor for a look over. Even though they weren’t doing COVID-19 testing, they could at least rule out some other things. It wasn’t the flu (I actually did have the flu — B-strain — in February). It wasn’t bronchitis or sinusitis, pneumonia, or mono. I was told to keep monitoring my symptoms, rest, stay hydrated, and was at least given clear guidance on when/if to go to the ER.
On day 6, it was clear that I wasn’t getting markedly worse, but I also wasn’t getting any better, either. A friend of mine reached out with a number to call. She was friends with someone who was running one of the private COVID-19 clinics in our area, and she thought it wouldn’t hurt to get tested — at least for peace of mind. So on day 6, I got tested.
At the clinic (which was really just a remote site, a series of “hidden” tents), my vitals were not good. My blood pressure was off the charts (and I don’t have high blood pressure), my pulse was racing, and my oxygen was low. They were worried I might be having a “heart issue,” which I later learned happens to a lot of COVID-19 patients in ICU. Without having the test done at all, I ended up being admitted straight to a nearby hospital’s heart unit of the ER — the absolute last place I wanted to be — but that is an entirely separate story of its own.
In short, I was ultimately given the COVID-19 test in the hospital, and since they were expecting to release me soon, I wouldn’t get the results during my stay. They said it could be up to ten days for the result. I learned there was (at least at that point) anywhere from a 5 to 30% false negative rate with the test, especially if the samples weren’t collected properly, or at a time when a patient didn’t have readily detectable levels of virus in their bodies. And I was told that the test wasn’t yet FDA-approved, since this was a new virus and a public health emergency.
I was told that all of this info regarding the testing was rapidly evolving — and that was twenty-two days ago. The doctor told my husband and I that neither of us should be going anywhere, including him to his “essential” job. We were given work notes stating that I was “under investigation” for COVID-19. I was told to self-isolate, mandatory for at least 14 days. I was told to presume it was COVID-19 and take all precautions to prevent the spread.
Ten days later I got the results. I was told that my test was negative for COVID-19.
After talking it over with the doctor, though, she said she’d presume it was positive even with a negative test, based on my specific symptoms, and the length/duration and intensity of them. She explained that a positive test result would most likely be certain, but a negative, not necessarily. Kind of like a pregnancy test in that regard.
She explained that the virus they were testing for, SARS-CoV-2 (the virus that causes COVID-19) doesn’t necessarily live in the nasopharyngeal area of all patients, which is where they were swabbing at the time. I researched this later on my own and found info consistent with exactly what the doctor had said.
What was perhaps even more troubling was when my doctor said I could look into getting the antibody test, because then I could maybe know for sure whether I’d had the virus this time or not, but even that was not optimal, since there appear to be different strains. Further, she explained that just because someone tests positive for SARS-CoV-2, that doesn’t necessarily mean they won’t or can’t get a separate case — a mutated version — of the virus later on.
Other strange symptoms I had:
- I startled easily. My husband would come into the room, and even though I heard and saw him coming, I’d still jump. To this day I can’t figure that one out.
- Disorganized thoughts. Along with the short-term memory loss I was experiencing, I also was having trouble just thinking. I’m not talking about deep thoughts, either. Just my regular stream of consciousness. Those thoughts. The ones you don’t have to even think about. This symptom was really, really bizarre, and it feels almost impossible to explain. All I can say is that my thought patterns felt scattered, disorganized, jumbled, and very confusing. It was disorienting. Which led to:
- Worsening depression. Depression is no stranger to me. It runs in my family and I was diagnosed decades ago. It’s well-controlled with an anti-depressant (and over the course of about two decades, a phenomenal therapist). I typically have a spike in depression when I’m really sick or recovering from surgery. But I know it’s temporary. The spike in depression I felt from this illness seemed to stem directly from the whole disorganized thought patterns. It would start with recognizing the short-term memory loss, then proceeded as a terrible, sinking feeling which quickly spiraled into deep depression.
- Feeling of weightlessness in legs. I noticed this shortly after the fever started. I’d have severe muscle aches in my legs, but it would almost always be followed by a strange feeling like my legs were really light, or floating, or weightless. They weren’t, of course; I knew it was a perception issue, but it was troubling regardless.
- Nervous-like skin crawling sensation. This isn’t the same type of “skin crawling” sensation I typically have with fevers and illness. Like, when you feel so bad that your “skin hurts.” This was more along the lines of the jittery or tingly feeling you get just under your skin when you’re really nervous about something, only I wasn’t nervous about anything. I would also occasionally have an odd, painful burning/tingling feeling in my limbs — mostly my arms, both sides equally.
- Auditory hallucinations. In one instance, I could’ve sworn my husband was watching an action movie downstairs with the full surround sound on. I texted him asking him to please turn it down. When he finally responded an hour later, he said he’d been napping on the couch — the TV hadn’t been on all day. Yet I continued hearing this noise off and on for several days. Whenever I heard it, it would be a constant, hours-long muffled rumbling sound, like you’d hear in a movie theatre while walking past one of the auditoriums that’s playing a loud action film. I never discovered any source for the noise.
- Night sweats. I’ve now been “recovered” from this virus for a little over a week, but I’m still having night sweats (which started on day 2 of the virus). It only happens during the night while I’m sleeping. I wake up every night around 2 or 3 a.m. to find a saturated area on the bed, and my back or legs are sweating profusely. This is when I usually get up to go to the bathroom and notice I’m sort of cold. So it’s not like a heat-related sweat. This is a strange symptom that I never experienced before this virus, and one that seems to unfortunately be lingering.
On day 12, my fever broke — and stayed away without me having to take any fever reducing medicine. On day 14, I ventured out of my room and downstairs to do some teleworking. As the week wore on, I started losing steam and momentum, and on the morning of day 16, the fever came rushing back. That was a Friday. I ended up staying in bed all day Friday, Saturday, and Sunday. The depression and all the other physical symptoms returned. I thought this was never going to end.
That said, it’s been a little over a week without any fever at all. Most of the symptoms are either gone or reduced, including the headache. The leg pain, fatigue, and body aches remain, though, and they don’t seem eager to leave.
I had resigned to the fact that I’ll never know if what I had was related to COVID-19 or not. And that was actually okay with me. But with the CDC recently adding 6 more symptoms to the growing list of COVID-19-related symptoms, I feel a little more certain that what I had was most likely due to the virus.
What’s been most troubling throughout all of this is knowing about the high potential for asymptomatic carriage, and the occurrence of prolonged viral shedding post-infection. Meaning there are scores of people who have it and don’t know it, and they’re out and about, unknowingly infecting others — especially the more vulnerable among us and the immunocompromised.
For me, nothing is scarier than the unknown, and with several states (and a president who’s) ready, willing, and eager to “resume business as usual,” I fear the worst may be yet to come. I hope I’m wrong.