Long-COVID and its impact on my daily life
With the end of the year approaching, I reflect on a year that was not what I imagined it would be.
Silent place- Orchha, Madhya Pradesh, India. There are times when silence has the loudest voice. © www.martinvogt.ch
When I tested positive back in November 2020, I had none of the severe symptoms associated with COVID-19. I took a test after feeling a bit under the weather due to a headache and a sudden loss of smell. After a few days of illness, and having completed the isolation period, I thought I was on the mend. I was wrong.
In mid-January 2021, I developed new symptoms. From one day to the next, my energy levels were completely depleted and I struggled to concentrate. Walking outside for just 10 minutes was one of the hardest things to do, and looking at a computer screen was (and still is) energy-draining. I became very unwell with an even stronger headache, cognitive disorders, muscle pains, and digestive problems, to mention only a few symptoms. Optimistic as I was back then and with all my new year’s resolutions set in stone, I figured that this would only be temporary—next week, next month, in 2–3 months this would all be over and I would be my energetic self again.
Normally, I am a very strategic and analytical thinker. However, I suddenly found myself unable to manage complex information and to follow conversations. I was forgetting words and had problems performing simple tasks and tackling basic logic problems. I would normally do these easily. I was always tired. There were many days on which I slept for 12 hours, and yet when I woke up, I felt as exhausted as if I hadn’t slept at all. My body felt heavy. Every muscle ached. Alongside the fatigue, I developed other issues with sleep. Although I was sleeping for excessively long periods, I would have night terrors and wake up with my body paralyzed. Sleeping remains an issue for me. My symptoms left me struggling and I could not return to work. It was really hard because I was among the first wave of sufferers and the impact of the disease was not yet defined or understood.
For weeks, I went through cycles of feeling better, before getting worse again. In addition to brain fog, memory loss, debilitating headaches, and fatigue, I developed many other symptoms including heart palpitations: I could be sitting down watching television or going for a walk and suddenly I’d feel my heart racing.
A common frustration is that some medical doctors dismiss our complaints as psychological. My symptoms were initially put down to depression by my GP. Feeling like my health concerns were being dismissed, I insisted on a “Long-COVID consultation”, after which the clinic director diagnosed me with “Post-COVID-19 syndrome” and referred me to a Long-COVID rehabilitation program.
Trying to stay positive
If 2021 was the number I was aiming for this year, my last few months in numbers read a little differently. I have now had symptoms for 382 days (52 weeks), during which: 22 is the number of Long-COVID symptoms I’ve had; 12 is the number of pills I’ve taken; 8 is the number of doctors who gaslit me; 5 is the number of hospital/clinics I’ve visited.
If this seems like a story of loss, that’s certainly in there. What did I lose, alongside copious amounts of my hair? My identity as being young, fit, and able. My coping mechanisms; achieving, exercising. The ability to stand up, talk or walk (especially up stairs). The ability to eat normally, drink coffee or alcohol, tolerate heat, cold, changes in temperature, or any stress whatsoever. But this is also a story of gain, growth, and gratitude. What did I gain, alongside a list of prescription and over-the-counter medications? An exciting array of letters to put next to my name (not the acronyms your mother wants you to get): PEM, ME/CFS. Some less catchy words too – New daily persistent headache, post-exertional malaise, chronic fatigue syndrome; quips aside, I gained a profound sense of what I want my life to look like, what I value, and what my limits and boundaries are.
Debilitating illness can be the ultimate lesson in slowing down, in mindfulness—sometimes slowly sipping a cup of tea really is the highlight of your day. I have gained a deep understanding of the mind-body-spirit connection and a resonant understanding of trauma, what it is, and what it does when it remains unprocessed. I am immensely grateful for so many things; for my family that has quite literally picked me up from the floor, for loving friends and supportive colleagues. For being able to advocate for myself, and being able to digest medical papers. For having access to leading medical specialists who have listened to me and supported me throughout this experience. I am particularly grateful for the ability to recognize the limits of conventional Western medicine which, whilst it excels at life-saving surgery, trauma resolution, cutting-edge scientific advances, falls short with regards to many chronic conditions.
The Breakthrough
© www.martinvogt.ch
But my biggest breakthrough has been in marrying modern science with ancient wisdom, forming a personalized and holistic approach to health that encompasses mind, body, spirit, and environment.
I had weekly sessions of acupuncture, physio & ergo therapy. I have taken the time to test and understand the effect of Traditional Chinese Medicine and psychotherapy every week. I have taken the time to test and understand unique combinations of environmental toxins, deficiencies, and excesses and I try to practice breath-work and meditation daily.
There's an African proverb I carry with me: "Health is a crown worn by the well, seen only by the sick". When you lose your health, the thing that is most precious, you see what a gift it is to be able to eat the food you want, not have to hide how you feel at work and be fully present with your family and friends.
I’ve found a way to still have gratitude for my life, and use this experience as a vehicle to grow. To become the person I was always meant to be. When I experience a pain flare, I don't freak out. I re-regulate myself with the tools that I've mastered throughout this journey and cultivate positive emotions that keep my morale up.
Fast-forward to August 2021 and I am employed with a very reduced workload. On my days off, I sleep for 9–10 hours just to catch up. I still have vivid, terrifying dreams. Before COVID-19, I’d only ever needed 6-7 hours of sleep each night to feel refreshed.
Listen to an audio documentary of the Novartis live magazine, a new Podcast series that shines a light on how Novartis associates are recalibrating their outlook on work and life in a fast-changing social and technological environment. Learn about my story on Living with long Covid. The podcast was recorded in early September.
(The interview was conducted by Goran Mijuk Editor-in-chief of the magazine on September 1, 2021)
Now, more than a year on from my initial infection, I am slowly recovering – although I am still very far from being back to my previous lifestyle. In the past few weeks, I have started to feel fresh and sharp again, although my body still rebels from time to time for no reason. I was also finally able to start running again. I can only manage very short periods, but hey, here I go! I am learning to manage to live with long-COVID. This means healthy eating, pacing myself, and incorporating healthy lifestyle tips.
The hardest part of this journey was accepting that I carry an invisible disability with ups and downs. Long-COVID represents one more reason to encourage to get vaccinated (and boostered) as quickly as possible.
Let’s try to stay positive, and I hope that everyone stays healthy and safe during these sometimes lonely and isolated days.
Please take care of yourselves and leave a comment if you like.
Martin Vogt
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