Long Covid and Light Bulb Moments

Has a light bulb moment changed your life? Was it like a bolt of lightning out of the blue or more like a moment of clarity where all your past and present come together to give you a new insight or perspective?

I’m a logical person, so don’t necessarily believe in light bulb moments that offer inspiration out of nowhere - but inspiration favors the prepared mind. Those light bulb moments are more likely to come when someone has knowledge or experience in a given area to help connect the dots. When they see a new bit of information, or something in their everyday life that triggers new thinking, all their background suddenly joins with this new information to create a moment of clarity, and new insight.

I had one of THESE light bulb moments ealy in the spring of 2023, when I started to dig into the literature around Long Covid in earnest and a few key papers on Long Covid were published. That moment helped me start to make sense of my own Long Covid symptoms. The new findings, combined with my own experience of Long Covid and what I knew from previous work in the health sector, suddenly all connected and provided deep insight and some answers about what might help manage symptoms. In that moment I suddenly realized the true scale of both short and long term risks to my health if I did nothing - it frightened me to my core, and made me determined to find a way to reduce the impact Long Covid had on my body.  

Tricky problems in both my personal and work life were always made more simple through research and gathering facts. What was so different about Long Covid was that I didn’t feel able to do that, I didn’t feel like I had the ability to embark on a major research project alongside everything else. I was in a cycle of barely having enough energy and brain power to make it through the day. I knew I was not well, but also knew that knowledge about post COVID conditions was limited, and that I didn’t have the bandwidth to do speculative research. 

In the last half of 2022 and in early 2023 a number of papers started to emerge. While reading one paper¹ I had my first true lightbulb moment related to Long Covid. This and other papers² spelled out the stark reality. Long Covid was bad; very, very bad. It made you feel awful now, but it also made you more likely to have poor health in the future due to increased risk of heart issues, stroke, cancer and Alzheimer’s to name a few.

On the spectrum of people experiencing Long Covid, my symptoms were moderate to mild. I was able to work, go out for walks, spend time with my family and even use some energy to support my community. However, everything was a struggle and my symptoms impacted (and limited) everything I did - they disrupted sleep, left me with an elevated heart rate, heart rate spikes, breathing difficulties, unexplained pain, constant headaches, gastro intestinal issues, brain fog, persistent fatigue, loss of coordination, frustration, anxiety and more.

This was all a new experience for me. I had led a busy and energetic life. Working as an economist for the National Health Service, commuting, going to the gym, spending time hiking and socializing with friends. My work was challenging, but very rewarding - using data and information to improve health care and health outcomes for people, including those with complex conditions. As part of that work, I had access to two things that fed my lightbulb moment (i) incredibly talented clinicians who helped teach me how systems like the immune system, nervous system and brain interact; and (ii) data that clearly showed people are likely to have a sharp drop in healthy life expectancy if they have a combination of symptoms that may not initially seem related (similar symptoms to what people with Long Covid describe). On top of this professional experience, I had recently lost my mother to cancer. Her cancer diagnosis came after a case of Lymes disease that went undetected for longer than would have been ideal. She had a background in medical research and managed to educate herself - and me - about the impact infections can have on the body, as well as some steps she could take to allow herself to be as healthy as she could for as long as possible. Those steps helped give her an extra 4 years of life; full of travel, time with friends and “firsts”, including welcoming her first grandchild into the family. 

Both my professional and personal experience meant that I had a feel for the risk factors that led to early onset of health issues and complications across a population of people. I also had personal experience supporting my mother. All of this provided me with knowledge about how different systems in the body can interact, and the actions people can take to help them work better or less well.          

When reading the research about Long Covid and hearing experiences of people living with the condition, my background working in the health service and personal journey suddenly all fit together. As I read more about what findings were saying about how Long Covid may be impacting the body, my past knowledge and current experience collided into a new understanding of both the past and the present. I had a young family and was looking at the prospect of not only an impaired day to day existence, but also very strong odds of early onset of other serious illnesses and death. I obviously didn’t want this for myself. I knew how hard things were on my husband, who was picking up a lot of the slack without the partner he had always had. Perhaps the strongest driver of all was that I didn’t want this for my daughter. If I could help it, I didn’t want to miss out on having adventures as a family, I didn’t want her to be burdened with having to look after her mother, rather than being unburdened and to rely on me as a rock in her life.   

This light bulb moment was my bottom. I had seen these patterns before when doing health care work - I knew the statistics. Suddenly this applied to me. This downward spiral of health issues was somewhere in my not distant enough future. COVID may be a new disease, but the descriptions of a cascade of body systems starting to not work well or shutting down was not good news. It also wasn’t new. I was suddenly very aware that I had to do something different if I wanted to increase the chances that I could be there with and for my family.

I couldn’t change the past, but I was determined to control what I could control going forward- determined to find and take actions that could help me start to feel better. This began with work to support better functioning of my nervous system through small and gentle movements. As I felt better, I was lucky to connect with Andrea and together we built up a robust toolkit for improvement.

I am delighted to say that I now feel better day to day, and a number of the measurable risk factors have gone down. My doctors are impressed and amazed by the scale and pace of change, but the real prize is that I am back to being and feeling like a healthy, adventurous and driven 40 year old, who is able to actively support her family to thrive. I am grateful for that light bulb moment, to all the people whose work helped inform it and for all the large and small elements in my background that helped guide me to the understanding that came together in that moment.

My hope is that everyone impacted by Long Covid or other post-viral conditions can have a similar light bulb moment. That it brings a deeper understanding of what is happening in your body and helps you find a pathway to impactful actions and improvement.

Andrea and I are passionate about sharing our knowledge and backgrounds to support others through their post-viral journey. This is especially true as we know how difficult it can be to research and find solutions when you are already not feeling your best. Please feel free to reach out if you are still looking for your light bulb moment and want to learn more.   

I wish you all the best,
Katie

¹Bowe B, Xie Y & Al-Aly Z. Acute and postacute sequelae associated with SARS- CoV-2 reinfection. Nat Med 28, 2398–  2405 (2022). https://doi.org/10.1038/s41591-022-02051-3
 

²Davis HE, McCorkell L, Vogel JM, Topol EJ. Long COVID: major findings, mechanisms and recommendations. Nat Rev Microbiol. 2023 Mar;21(3):133-146. doi: 10.1038/s41579-022-00846-2. Epub 2023 Jan 13. Erratum in: Nat Rev Microbiol. 2023 Jun;21(6):408. PMID: 36639608; PMCID: PMC9839201.