Host to a plague: my experiences with long Covid
As we move toward the two-year mark of this pandemic, public sentiment is leaning further and further toward the conclusion that the country must simply accept the ongoing presence of this shape-shifting virus and get on with our lives. This is as understandable as the legion of burnt-out workers switching their careers en masse in search of a better work/life balance. As visceral as craving stability after two years of moving targets and shifting guidelines. For many, the numbers are so high as to become meaningless–we simply cannot wrap our heads around what that many millions of cases looks like.
Then there’s me, and millions of people like me. I contracted Covid-19 very early, becoming symptomatic at the beginning of April 2020. By the last week of April, I was in the hospital with low blood-oxygen, difficulty breathing due to Covid-induced double pneumonia, a fever, and a migraine so bad that the nurses packed my head in ice. These were the days when they still weren’t giving pain relievers or fever reducers of any kind to Covid-positive patients, so bags of ice around my head and a dark room on the quarantine ward was the only comfort the nurses could give me.
I can say that in many ways, I was lucky. With the care of great nurses, I recovered enough to go home after about a week. Oxygen levels were improving, fever was down, migraine had mostly subsided, and I could walk around my room for more than a few steps without feeling like I was going to pass out. I never needed to be put on a ventilator, for which I am thankful. I survived and I went home to continue to recuperate. That was the plan.
Most of my symptoms subsided for awhile in May and June of 2020. And then I was called back to work on-site part-time; our staff was working in cohorts to keep risks down. We worked from home on the “off” days. It was grueling, providing curbside service to hundreds of customers a day all summer and into that fall. I’d spend a shift at work, then come home and fall into bed where I would sleep for 10–12 hours. I needed to break my work at home into smaller chunks and rest in between tasks. Small exertions, like making dinner, left me exhausted and unable to focus or even speak due to severe brain fog.
At the time of this posting, these symptoms have not subsided, but rather both intensified and multiplied.
If you’ve read anything about long Covid, aka long haul Covid or PACS, you may have been disbelieving of the nearly endless list of symptoms associated with the condition. No way, you think, this is nuts. And you are 100% correct. It is insane. I’ve likened it to living in a haunted house. Some days are fairly quiet, with just a few anomalies. Some days, I wake up and am confronted with the equivalent of finding your living room furniture in the backyard: this is fucked up, ridiculous, and it’s going to take a lot of problem-solving and effort to get through the struggle ahead.
Painful episodes of muscle rigidity in my legs and torso are a lot like a charlie horse, only not just one muscle but instead one or more limbs. These may be accompanied with tremors and other uncontrolled movements–some as severe as to appear like seizures, while others may be more localized as when my right quadracep spasms hard enough for my entire leg to bounce off the mattress. Joint pain, persistent fatigue and vertigo so bad I have to lie down or I’ll faint. Brain fog, such a dumb moniker, is multi-faceted: short-term memory impairment, difficulty speaking, losing the thread of a conversation between one word and the next. Most recently, I have had several instances of weakness in my arms, temporarily making it impossible to hold even a pencil. Also worsening are flares of numbness on my right side. Even after multiple tests and scans, nothing pops up as noteworthy or abnormal. I’ve seen a herd of specialists in the last two years. The best I’ve got is medication to help my persistent migraines.
It sounds like a horror movie. Instead, this is my life on an average day.
My lungs, however, are fine, despite the pneumonia.
Unfortunately, I have no answers for any other symptom I continue to experience. I read, I research, I attend online seminars…all in the hope of learning something, anything, that might help. Two years and counting, the neurological issues that plague the millions of Americans with long haul Covid are still a mystery. We wait two and three months for the next available appointment with a specialist, only to find ourselves disbelieved, rebuffed, or referred onward. Clinicians at all levels seem unprepared for this tide of patients in need.
We were unprepared, too.
