I am a middle-aged male with a background in environmental science and technology. I first majored in Speech Pathology and Audiology before switching to Environmental Studies and discovering how technology can support environmental and civil pursuits. These fields taught me an interesting mix of research, scientific methods, and a tiny bit of medical science. Upon graduating I shifted my focus to information systems, and I continue to work in a specialized area of computer science and information technology.
You probably noticed that I have not shared my full identity. That is because as a person with a debilitating chronic illness trying to keep my career, I cannot afford for people to Google me and dismiss me as incapable or unemployable. By not sharing my full identity, I am free to be candid here in the hopes that my story can help similar suffers feel less alone, and that my methods might potentially spark an idea that they can discuss with their healthcare professionals.
I came down with COVID at the very beginning of the pandemic. At that time no tests were available, but ER doctors and various specialists were confident that my acute symptoms matched – shortness of breath, dry cough, low oxygen levels, reduced sense of smell, etc. I quickly developed pneumonia, but declined to be admitted to a hospital as I had access to good medical gear at home such as pulse oximeters to measure oxygen, nebulizers to help with breathing and blood pressure cuffs. The doctors reluctantly allowed me to recover at home if I was willing to share vitals and symptoms via a daily call from a nurse over the next couple of months.
Once the pneumonia cleared up, I went back to work full-time, thinking I had beaten COVID. I even received a “Congratulations on Beating COVID!” card from my colleagues. But then the weird stuff started: crushing fatigue that made it difficult to walk or get out of bed. Brain fog so bad that I would involuntarily space out for blocks of time and the worst migraine of my life that would not go away. My first blog post has the full list of symptoms.
At around this same time, news stories started popping up about “long COVID”, “long haulers”, “long-COVID”, “post COVID” and “Chronic Fatigue Syndrome” as millions of people in those first waves of infections developed similar issues. Many got better after a period of months, but some gave up on the medical system and stopped reporting. Disturbingly, others simply could not take it anymore and committed suicide and still others died of surprise cardiovascular events like strokes, heart attacks and blood clots.
I am among those who did not really recover, and who have had to learn techniques to make the most of diminished capacities. I still work, but at reduced hours and only from home. I still have things to contribute to this world and the people I care about.
Since Long COVID is complicated, relatively new and because many sufferers have changing symptoms, improve or die, it is very difficult to study. Treatment is mostly a mix of experimentation and guesswork, while drawing upon lessons from other poorly understood conditions with similar symptoms such as Traumatic Brain Injury (TBI) and Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (ME/CFS). This is further complicated by the lack of any definitive Long COVID tests for diagnosis, and the lack of FDA and insurance approved treatments.
Since I and others like me are having serious problems right now, I cannot wait for another decade of research, clinical trials and FDA approvals to find relief. My ability to work and function hangs by a thread and I must take action now, proven or not. I saw every kind of relevant specialist I could think of for advice. Every week I Google for breakthroughs, promising studies, or treatments used on similar conditions. If something sounds promising, I try it for a while. If it fails to help or causes a problem, I move on to something else. I discuss everything with my doctors in the hope that I will not accidentally damage an organ or make something worse.
So far, this approach is helping me. I suspect, but am not qualified to claim, that some of my methods could possibly help others in similar situations. Thus, I created this blog to share my journey with Long COVID, with an emphasis on what is working for me.