Six-Months As A Covid Lengthy-Hauler: Endless Signs, Many Unknowns
Wait and count for six months
I’ve traveled around the world for years, but haven’t left my apartment since March except to see a doctor. I went on a tired, frustrating six month personal journey that I didn’t sign up for.
This incredible year got off to a great start when I brought out my new travel book at Books & Books in Coral Gables on February 16, which I read to a packed group. By then, we knew there was a virus in China and Italy, but our president had downplayed its severity. We were unaware of the extent of the danger that was already looming on us.
A week later, with excessive caution, my sons suggested that I not fly to New York, which was starting to run into problems, so I reluctantly canceled two performances. But on March 6th, I decided to attend a press lunch in Miami and sat next to a man from Monaco. There was still some serious talk about mask wearing and social distancing, and I remember laughing when we awkwardly bumped our elbows instead of shaking hands.
Ten days later I felt sick: runny nose, sore throat, slight fever; and then, slowly evolving, the worst breathing problems I’ve ever experienced.
Florida still had few cases of Covid so I hoped and was told my problem must be mold or allergies. We hired a commercial cleaning company and installed HEPA air filters. But I was extremely short of breath, coughing and panting. Weeks later, I tested negative and reached for the questionable verdict.
At some point I packed a bag in case I had to go to the hospital at the last minute. I eventually left, but an x-ray showed no pneumonia and my oxygen levels were borderline so I returned home to drink fluids and rest. I was warned to stay out of the hospital and only return if my oxygen levels dropped.
My doctors prescribed steroids and antibiotics, and with breathing exercises and nebulizers, my breathing slowly improved. I’m in an older cohort and have prerequisites, so I was especially grateful that I wasn’t one of those who died of Covid-19.
But new symptoms developed and persisted. And after a few months my clinical diagnosis finally became “post-viral syndrome, presumed Covid”.
I am now a “long distance rider”. One of the “invisible sick”. For over six months since my first symptoms, I still take steroids and supplements to keep going, still napping for much of the afternoon, still going to doctors, and still taking tests to find out what’s wrong with my body.
According to the Centers for Disease Control, my journey into this disease is one that hundreds of thousands in the US and millions around the world are also taking. And perhaps up to a third of people who weren’t sick enough to be hospitalized suffer from the long-term effects of this novel virus.
So many symptoms
The Survivor Corps, over 100,000 members on social media, worked with Indiana University to conduct a symptom assessment. Members reported 98 diseases from Covid-19 – eight times more than listed by the CDC.
Covid appears to be a vascular disease in which almost every organ is potentially damaged. Breathing problems are the most common long-term symptom, but there are neurological problems. and conditions including diabetes; Lupus; Joint inflammation; Skin problems; and a heart disease that can lead to a stroke or heart attack.
From my Facebook support groups I have heard complaints of brain fog, dizziness, twitching eyes, GI problems, heat intolerance, migraines, nausea, neurological deficits, sensitivity to light, pleurisy, loss of appetite, shortness of breath, loss of taste and smell, tingling sensations. yellow tongue, red toes, blue lips, bulging veins and curled fingernails.
My own symptoms now are fatigue, hoarseness, wheezing, carbonated nerves, numb limbs, leg pain, shortness of breath, blood pressure varying from very high to very low, night sweats, insomnia and a strange buzzing sound in my body (I was relieved) when I realized that many long-distance people also have this terrifying feeling).
The symptoms come and go
There’s a reason Covid has been dubbed the “Rona Coaster” over the long term. We also refer to it as the beast, the devil and the demon. I can feel okay and ten minutes later I feel like hell. Day after day we never know how it’s going to go. And many of us have fallen behind many times.
We don’t know how to handle it
The situation is improving, but so far there has been very little research on long-range Covid-19 and little on government policies or programs. However, this problem will place a huge burden on the health system.
Patients lead the way in trying to find out what is wrong. I learned terms like mast cell activation, dysautonomy, POTS, tachycardia, orthostatic hypotension, gastroparisis and hyperhidrosis. We compare Covid to other viruses like ME / Chronic Fatigue, Herpes, AIDS and Epstein-Barr: some get better with time, others with treatment, and others with rest. Some viruses just won’t go away, but we don’t know about this novel virus yet. Some long distance drivers have gotten better. Many don’t have.
Long-Covid was largely ignored or hidden until recently, a forgotten stepchild. It is time to address the problem.
Many long-distance drivers go to our doctors with serious illnesses and are still told that we are having an “anxiety attack”. The medical community, the government, and people who don’t care about safety protocols have to believe us.
Thank goodness for the growing number of online support groups connecting us with other long distance riders around the world.
It didn’t have to be
Not only has this government botched the mortality of over 200,000 people, it has botched the morbidity of millions of us with difficult, potentially chronic, illnesses. That makes me angry.
Long-haul Covid-19 patients are grateful that we are not dead. But many of us are still hurt and suffering, with no end in sight.
While this pandemic continues, please follow the basic rules: wear a mask, keep your distance, wash your hands, avoid indoor groups. You do not want to receive this virus in any form or give it to others. You don’t want to wonder if you will ever be healthy again.
You don’t want to take this trip.