A Year with Long COVID Part 2
On Recovery Strategies or How Not To Make My Mistakes
I began using patient-led, community resources like Body Politic starting in May of 2020 to try and figure out what was going on with my body. I was also researching post-viral chronic fatigue syndrome on my own, but I’d yet to take what I was reading and develop a treatment plan. Since I was often mentally taxed, it was difficult to put in the time I needed to read relevant information and process it. Paragraphs and words would blur; my head began to hurt. The complexity and scale of the issues also intimidated me. It still does. The amount of potential things going wrong in the body is overwhelming.
In August, I met with a leading cardiologist at a major hospital in New York who told me all I needed was rest and easy, but increasing amounts of exercise, like walking or bike riding. While putting me at ease and leaving me feeling hopeful, I was left without any way to address my immediate symptoms. No suggestion of medications, supplements, or therapies was offered, no referral to a physical therapist to work on programming or exercises. The advice, as I later learned, was also presented in a way that could lead to further flare-ups.
The Fitness Myth
At this point, it’s necessary to describe my fitness before Covid. While I’ve described my past health challenges, it’s important to point out that I had what would generally be considered a ‘healthy lifestyle.’ I ate a diet primarily of whole foods. I was, yes, gluten-free. Fast food indulgence was Pad Thai from my favorite Thai restaurant or a creamy, carb bomb of an Indian dish. I was exercising 3–4 times a week. So every time I see a Wellness Warrior in someones Twitter comments asking if they tried some simple dietary change, I roll my eyes.
In the year leading up to my Covid infection, I was probably in the best physical shape I’ve been in since high school when I ran track and field and played lacrosse. I was practicing basic gymnastics and lifting weights. I was performing movements like ring pull-ups and handstands. I felt strong and confident in my body.
I went into Long COVID having the desire and experience to use physical activity to rehab and strengthen my body, but this is not what my body wanted. I share my background because it’s important to push back against the myth, repeated by influencers with huge audiences, that if you’re young and healthy, you have nothing to worry about. There are many young personal trainers, athletes and yogis suffering from Long COVID who would agree with me.
I make these points because some doctors are advocating these ideas and I imagine insurance companies love them. If millions are suffering from a complex, chronic illness that has identifiable but obscure biological markers, Long COVID could become very expensive for insurance companies. If, on the other hand, your doctor can simply prescribe physical therapy and a script for counseling, there’s nothing for insurance companies to worry about.
This is not to write off physical activity. For some people, at some stages of recovery, physical activity, particularly if it’s managed with certain principles I’ll touch on later, could be useful. Physical rehab has been used at various Post Covid clinics, with varying degrees of success. Anecdotally, I’ve read social media posts from some saying it’s helped and from other’s saying it’s harmed. Similarly, I’ve read about people for whom exercise at the right time in their recovery process was enormously useful and confidence building, while for others it led to a severe worsening of their symptoms. This goes to show that recovery is highly personal and unique to the set of issues driving your particular symptoms.
Exercise as recovery needs to be flagged due to its history as part of a treatment protocol for a similar disease to Long COVID — Myalgic Encephalitis/Chronic Fatigue Syndrome.
While Long COVID is likely a unique condition, potentially with different subsets, some people will develop post-viral M.E./CFS. A key question to ask yourself is when you perform an activity, any activity, from walking to talking to reading or watching TV, do your symptoms flare afterward? Do you feel like you “crashed” — experienced a worsening of your symptoms — in the hours or days after a longer walk than usual or stressful situation? If so, this is a sign of what is termed “post-exertional malaise” and indicates you could have M.E./CFS.
M.E./CFS is a chronic illness that can follow in the wake of a viral or bacterial infection. It can be brought on by other factors, but for simplicity and the context of Covid, we will focus on post-viral M.E./CFS
M.E./CFS is a complex, baffling illness. Because an infection can throw so many of a body’s foundational systems off balance, it requires a comprehensive review of all the key systems in your body — immune, hormonal, neurological, endocrinal, and so on. Treating it is no different. While there is no cure for M.E./ CFS, there are methods for managing symptoms and some people do recover. For this reason, if you are experiencing Long COVID, I feel that it’s worth educating yourself on this disease and borrowing treatment strategies to manage your symptoms. For an excellent write-up on how Long COVID and M.E./CFS are similar, and therefore share similar management strategies, I recommend this article. It explores all the topics I’m touching on in more depth.
Pacing: A Safe Alternative to Graded Exercise Therapy (GET)
One key to avoiding making your symptoms worse is Pacing. Rather than relying on prescribed exercises, Pacing involves finding a level of activity that you can comfortably handle without causing your symptoms to flare. This will be a process of trial and error, but my advice is to set your bar very low as you begin. The benchmark is to find 80–90% of your maximum Heart Rate (HR) and perform all activities at or below that number. Here’s a how-to guide
You might be surprised at how little your body can initially handle. I overestimated how much activity was too much during the first three months after my infection. I tried yoga and light calisthenics as a way to “get back in shape” despite still feeling sick. After multiple YouTube yoga sessions and bodyweight squats, I realized exercise only seemed to be hurting. This was before I was aware of pacing and heart rate safe zones. Perhaps if I’d followed this advice sooner I may not have found myself still sick a year later.
Pacing stands in contrast to Graded Exercise Therapy
The basic premise of GET is that following a viral infection, the body becomes “deconditioned” — hence the fatigue, headaches, and bewildering array of symptoms that many people experience. By simply re-conditioning the body, coupled with cognitive restructuring via Cognitive Behavioral Therapy (CBT), we can bring ourselves back to health. For an in-depth analysis of what GET is and why it can be such a harmful approach for recovery, read this piece:
Does a person who exercises very little or not at all, experience debilitating fatigue, migraines, nausea, neuropathy, racing heart rate, dizziness, or low-grade fevers that last for weeks or months as a result of their not exercising? Perhaps there is something more complex going on than an out-of-shape body.
What is particularly challenging about both Long COVID and M.E./CFS is that it is not just physical activity you need to pace. Any activity that involves your nervous system, which is to say every activity, requires pacing. Reading, watching TV, spending time online, talking, listening to music, all of these are potential stressors.
“So, if everything can make my symptoms worse, what am I supposed to do with myself??” you probably want to ask.
It‘s essential is to plan rest time into your day. This means lying down, closing your eyes, and trying to nap. Even on the days you feel well, it’s important to take forced rest breaks. On a day like today, as I’m editing this paragraph, when I feel so much better than usual, it would be tempting to cram as much activity as possible. But that would only hurt me. Around 2 pm, I’ll be in bed napping.
Recovery?
Over a year since my infection, I seem to be on a slow but upward trend of improvement. Whether this is true recovery or not, I don’t know. This is a challenge because as I feel better, my body primed with more energy, I want to throw myself back into writing. I have a list of stories I want to pitch. I spend time thinking about what kind of exercise program I’m going to start any week now, of how to regain the 14lbs of weight I lost since last March. With the weather getting warmer, I want to enjoy a margarita with friends or have a night out.
But if I push myself too hard, too soon, I‘ll further delay all these desires. I did this last spring. I frequently do it by accident just from walking too much or being on a computer too long. Acknowledging my condition means accepting this will take a few more months, or even longer. Attention and gentleness towards myself, along with setting realistic expectations, are all qualities I have to work on holding every day.
No Hope, No Fear: Learning Acceptance
While I wish I hadn’t spent a year living with a chronic illness, I have made something positive out of the experience by acknowledging it’s provided a rare opportunity to learn lessons in acceptance. From that acceptance, I’ve been able to tap into gratitude.
My advice to anyone discovering they are living with Long COVID is to simply accept it. Struggling against it, trying to ignore it, or wish it away are natural defense mechanisms, but only radical acceptance allowed me to make peace with my situation. When I’ve been able to wholly accept the fact I’m living with a chronic illness, living with peace of mind and more emotional ease has been possible. Accepting my situation has also allowed me to find gratitude for small things in my life and this, in turn, has been an enormous gift for helping me avoid the depression and remorse that I so often dealt with the first few months of my illness. Appreciation for a hot shower, running water, for a good meal, the wind blowing in the trees outside my window — I’ve had countless moments where this illness has allowed me to feel a deeper sense of appreciation for being alive than is normally possible for me.
I still have days where I experience anger, anxiety, frustration, a short temper, fear, and grief. You probably will too, but these emotions can pass. They don’t need to become fixed in place.
Conclusion
In sharing some of my experience and the importance of rest and pacing as part of a recovery strategy, I hope I’ve provided an opportunity for those newly entering into the world of Long COVID for your struggles to be reflected.
My final piece of advice would be to find a doctor with experience treating M.E./CFS or post viral issues as soon as you can. They’ll be aware of testing and medication options that other doctors are just catching up to, at best. Short of that, find a doctor who is aware of Long COVID and willing to collaborate with you on testing and medication treatments. While more expensive than in-network doctors, functional medicine doctors tend to be more familiar with post-viral issues than standard internists.
Below are links to resources that I’ve found helpful both for learning about and managing my condition.
Resources
Long Covid
The Body Politic Slack Group — Comprehensive topic channels and a supportive community. Great place to post questions and connect with others.
Long Covid Physios — a peer support group of Physios & AHPs living with
LongCOVID, providing education, advocating for access to safer rehab, & research involvement.
Long Covid Support Facebook — Large Facebook based support group
Long Covid Support Group — Long COVID Support was formed by a group of people struggling to recover from COVID-19, who found each other online and have been facilitating international peer support and campaigning in the UK for recognition, rehabilitation and research into treatments since May 2020.
Stasis Performance — A free breathwork program developed in conjunction with Mt. Sinai’s Post Covid clinic, many Long Hauler’s have found the program useful for recovering lung function and capacity following their infections. The techniques have also helped some with fatigue and brain fog issues.
Survivor Corps — Survivor Corps is the largest grassroots movement in America dedicated to actively ending this pandemic. Full of Covid related resources.
Pacing
http://www.cfsselfhelp.org/library/pacing-numbers-using-your-heart-rate-to-stay-inside-energy-envelope — Provides an overview of using your heart rate to monitor your activity levels.
M.E./C.F.S
U.S. ME/CFS CLINICIAN COALITION — The U.S. ME/CFS Clinician Coalition was formed in 2018 by a group of American ME/CFS expert clinicians who have collectively spent hundreds of years treating many thousands of ME/CFS patients. Their website has a wealth of resources, including medication and treatment guidelines tailored to symptoms and clinicians who specialize in treating ME/CFS
ME/CFS & Fibromyalgia Help — Compiled by a Bruce Campell, Phd, who recovered from ME/CFS, this non-profit and website has tons of practical information along on pacing and recovery strategies, along with success stories to help keep you on track. I like that there are lot’s of resource devoted to addressing stress and psychology. While this illness is not psychological, stress and anxiety will exacerbate symptoms. Learning to work with them can help the body recover.
Phoenix Rising — A non-profit focused on providing information, resources and community for ME/CFS patients. It is a comprehensive resource and hosts the largest online forum for patients.
Physios for M.E. — We are a group of physiotherapists
in the United Kingdom with a special interest in Myalgic Encephalomyelitis (“ME”)
The information provided on this website is meant to inform and signpost helpful resources.
M.E. Pedia — A wiki style resource for ME/CFS. Browse all topics related to the illness.
M.E. Action — M.E./CFS advocacy and resources
https://www.med.stanford.edu/news/all-news/2019/04/biomarker-for-chronic-fatigue-syndrome-identified.html — I like to share this article when someone says “maybe it’s psychological?”
Unrest — Documentary film on ME/CFS. Available on Netflix
Twitter is a great resource for connecting with orgs and fellow patients. The following hashtags are all active communities:
#mecfs
#LongCovid
#LongHaulers
