Long Haul Covid: The Statistic People Ignore
I’m finally ready to talk about it, and it is long. If your reflex was to read the title and deny it exists, fuck you.
It was the end of November 2019 and around 02:42 I woke up with a crushing migraine. What woke me was feeling as if I was going to choke on my own vomit and the screaming, searing pain of the acid in my throat. I ran to the bathroom at the rear of our clinic and proceeded to throw up the soles of my shoes for an hour.
Vomiting and migraines were nothing new for me. I thought, maybe, it was something I had eaten on Thanksgiving that had not been agreeable to me. I worked as a paramedic (hence why I was able to catch a rare nap at work). Thankfully it was a slow night, I took my migraine medications and tried going back to sleep. I sweat through my clothes, the bedding the mattress and that morning when I picked the mattress up to carry it back into the storage area, I felt the moisture my body had left. I felt terrible, but I was going home so I could hammer out a few more hours and go rest. I just assumed it would be a migraine, like any other of the hundreds of migraines I had endured since I was 9 years old. At the time I was working a 24 hour shift every other day, something I had done for 6 months.
For the next month, I would have a constant migraine, just the degree of pain varied. I lost 13 pounds, my guts were scattered across the sewage systems of my home and work. I kept working, thinking I was just exhausted and needed to push on through. Eventually, I developed this weird barking cough, dry. In this phase of my life, I worked in a clinic on a chemical weapons demilitarization site, so I was not often on an active ambulance. I was lucky, because I could stay in my office and conduct physicals. Something had been going around the site when I was first sick. We all just thought it was a virus that would run its course and the medical staff in particular had been working some really challenging hours to meet the project goals. We just thought, collectively, it was a simple bug and we were all just…exhausted. Most symptoms resolved after that first two week period, I assumed I wasn’t contagious anymore, no fever…no sneezing or drainage, I was safe and cleaned up, wore a mask. The usual precautions when you work in healthcare and want to protect your patients.
I wish I had known, at 02:42 that November morning, what life would look like for me 2 years later. It is 0200 on January 1st, 2022 as I write this. The mood struck me to tell my story, sitting here alone, at work…always at work. At 35 I am a long haul Covid case.
Covid Isn’t Just About Surival Rates
8 months pass…grind, really. I have an MRI, blood work, brain scans. I was a perfectly healthy 33 year old woman, working in healthcare, steady job…my prime. My only real history was migraines, so I thought initially, it was just a bad migraine month. But 8 months later, after tremors, mood disturbances worse than my baseline mental health, dizziness, balance problems, speech issues and cognitive complications, I had endured enough. I sought medical help, because I couldn’t take it anymore. I had never felt such crushing pain in all my life. I really assumed I had a brain tumor. After all, what else would cause such a terrible series of neurological symptoms? I couldn’t write anymore, I could barely remember things.
I was sharp before. Witty, funny, bright…I lived mostly complication free, I would say the usual human events, with a little extra trauma here and there, but nothing really to write home about. The pandemic was in full swing, but we were only really barely touching the surface of “covid long haulers” when I called a time out and sought help. It wasn’t on my radar. I had assumed that what we all had in late November and early December of 2019 was Covid. The symptoms fit, we just couldn’t prove it because at the time in 2019 testing didn’t exist. All of us were negative for flu, strep and the usual suspects. Which is why we all collectively just assumed it was some cold-like virus that had some GI flare and it would pass.
You see, we all survived it together and most of us relatively unscathed. Some had lingering respiratory issues. I was one of those. Before, I could skip the gym for a couple months and come back to cardio without any real interruptions. EMS is a very physical job, so most of us in the clinic now had just recently stepped out of our roles in street work or flight and were still in peak shape. Not after this…I truly haven’t taken the same breath since that morning. I wheeze on stairs now, some nights I feel like I am suffocating, on the rare occasion I can sleep deeply enough.
In early 2021, the vaccines came. I was, of course, an early adopter. I immediately opted to get vaccinated. Team Moderna if you are wondering. The second shot was a little rough, but nothing like having Covid. And it certainly didn’t exacerbate the fucking dementia I got at 33 years old, thanks…Covid.
Things You Don’t Anticipate
Later in 2021 I had decided to go back on a mood stabilizer — I won’t vilify it here. Just know its a popular one and I’m not blaming it. Within a month I had lost cognitive function and could not remember where I lived. I could not recall how to use the objects in my shower that now felt entirely alien to me. It is like my brain and muscles lost their memory entirely, I felt like a prisoner in my body. So, I tapered off the drug and initially thought it was the medication. Later on, it occurred to me that perhaps the same brain that responded well to drugs in this series before Covid just wasn’t the same brain anymore.
And that's the hard truth of it, I don’t have the same brain I used to have before the illness. I just don’t. Wherever that brain went, I hope it is doing great, but I miss it.
My neck hurts with a relative consistency now and I am either always recovering from a headache or nursing myself through one. I don’t miss work or life tasks, I don’t skip out on time with family for them. This is just my new normal. I did not let my time get lost to Covid, but the trust I had in my body is gone. I am always in pain. 24 hours a day, whether I am barely sleeping or I am fully awake, I am in some form of pain. Pain is my new normal.
Chronic…crushing…screaming pain. And I’m one of the lucky ones. I don't have seizures, I didn’t lose my functional abilities. I didn’t die. I made it to 2022. Its just that from time to time I stand up or step to the side and feel like someone flushed the toilet between my ears and I can’t figure out where my body is relative to space and time. But, at least its just dizziness, I think. After a year of troubleshooting, my neurologist finally found a drug combination that doesn’t always prevent my headaches but it at least makes them tolerable. I can live with tolerable. I still have some tremors. I am not sure if I have adapted new ways of learning and remembering or if I’m just improving, but my memory is ever to slowly improving. My eyes still suffer spots and static, but I can see and that’s also a blessing. I was able to make it through my booster unscathed, I got a short migraine and it faded into the background after about 3 days. I am lucky to have received that shot, too. We have access here in America.
What I Want You To Know
I mean this respectfully and I mean this on behalf of those we’ve lost to this terrible fucking virus — it isn’t always did you make it out alive? We have lost roughly 5.5 million people worldwide to Covid since the pandemic was declared. An untold number of souls died without Covid being the identified cause, or died before we could detect it. People are still dying every day.
For those of us who have survived it, roughly 25% report long haul symptoms. There probably will never be a full bodied study that gives a real number of people walking around with long haul symptoms. Maybe it exacerbated your underlying conditions or made subtle changes that are regarded as your normal life. New studies are showing Covid lives on in your brain cells and other parts of your body far longer than your initial symptoms last. Those studies, I am sure, will be peer reviewed very soon and prove what I already live with every day. So, if you made it through Covid alive, but you didn’t make it out whole — I see you. I hope the people of world who downplay this virus, the people who turn their backs on science and the people who are too stupid to see their own ignorance someday see what their decisions and their derision do to survivors and to the loved ones whose family and friends didn’t survive.
For the record, it is 02:42 now. That seems poetic…