An overview of my recovery from Long Covid
Recovery from Long Covid was complex. I had to build a deep understanding of my body. I used a long list of practical tools to help my body heal. And I learned to lean on others.
First - thank you for your support since I shared my story a few days ago, and for your feedback and kind emails. The post has been viewed over 1000 times so far, and I’ve been really encouraged by your emails, comments and feedback. A few of you have told me that the skiing picture in particular gave them a lot of hope, and that makes me so happy. Another ray of hope at the bottom of this post :) Today I want to dive in and explain how I got better, starting with an overview. I don’t have all the answers, and what works for me might not work for you, but all I can do here is share how I’m making sense of it all.
Now that we’re getting into the practical: Please note that I’m not a doctor, nor a researcher. I’m just one person who has (mostly) recovered from a severe version of Long Covid and wants to pass on what has helped me, and my understanding of it. Please listen to your own body at all times, and always check with your medical providers before trying anything new.
Since recovering from severe Long Covid, many people have asked me what I attribute getting better to. I wish I could name one thing. For the first months, I was hoping for just that - a cure. I sought out every medical specialty, but nobody could give me a solution. I was crushed, and became increasingly desperate, because that was my understanding at the time - that I’d need a cure. I had already learned that “waiting and hoping for the best” wasn’t going to be enough. I had been doing that, and I had kept getting worse and worse, with no idea why.
In the end, what ended up helping me wasn’t a cure—it was a long list of things that were each a little bit helpful. The effects were subtle at first, 1% at a time. It was agonizing, and way too slow. But the small successes and improvements started compounding and reinforcing each other over time. I kept gaining strength. I made bigger steps. And to those of you thinking - “oh you were just lucky and got better over time”: here’s how I know it wasn’t that: While I was waiting, I was stalling, or getting worse. When I was actively working on it, over the next weeks I started slowly getting better. When I let up, I started sliding backwards. When I then got back to my basics and focusing on what had been working, I started improving again.
So, what was that “long list of things” that helped? I wanted to categorize them into a framework, so that it’s easier to understand how they helped. (Those of you who know me in person might not be shocked that there’s a framework, lol). Here’s what recovery, in hindsight, has looked like:
I’m now thinking of it like building a house. Terrible analogy, I know. But hey, I’m not doing this for a Pulitzer. The important part is that it makes sense. There were 3 pillars of practical tools, that were the main “work” of my recovery. Those were built on the foundation of understanding the illness and my body, which I gained from books, online resources, and a lot of practice (I’ll cover the basics in a dedicated post). This understanding really helped me use the practical tools in the right way, without “crashing” me, or making me worse (as things like even minuscule amounts of exercise had prior). And lastly, there was my support system, loved ones who provided the practical and emotional support that allowed me to focus on recovery. Without them I would not be here.
Let’s look at the 3 pillars of practical tools in a little bit more detail (and I’ll go a lot deeper in future posts):
Pillar 1) Reconditioning my nervous system
My doctor suspected that the initial COVID-19 infection had led to scarring in my heart and lung tissue (i.e., fibrosis), causing Long Covid. Everyone’s cause seems to be different - my primary one was, most likely, this tissue damage.
Despite the focus on my heart and lung, I found nervous system work to be a crucial component to my personal recovery. Judging from the patterns I’ve seen across recovery stories, that’s true for many people who recover. In particular, it seems to be true for those who experience PEM (post exertional malaise) and other ME/CFS symptoms, like dysautonomia (e.g., POTS). So I’ve gone pretty deep on the nervous system over the last year. I’ll explain how I understand it to connect to Long Covid and ME/CFS recovery in a dedicated post—it’s that crucial to understand.
The practical tools I used to recondition and regulate my nervous system were primarily (Update: I’ve been adding links to newer posts as I publish them)
Breathwork
Meditation
Brain training
Acupuncture
Cold water exposure
I’ll share details in the next weeks.
All of these are, broadly, mind-body tools - so they’re working on the mind to impact the body. I’ll talk about research on that below. I don’t think you need to do all of these tools (I went a little overboard maybe :))—but ideally, you do something to help your nervous system get back into balance, particularly if you’re experiencing symptoms like extreme fatigue, PEM (post exertional malaise), orthostatic intolerance, and/or sleep issues.
Pillar 2) Rebuilding my body (very, very carefully)
In addition to mind-body tools, also worked on the body directly. The main tools here were
Baseline training
this was absolutely crucial. I touched on it already in my last post
Medications
incl. prescription medication, but also off-label, and over-the-counter
Supplement protocol (Long COVID specific)
CHOP (Children’s Hospital of Philadelphia) POTS protocol
Outpatient rehab - 6 months of
speech and language therapy
physical therapy
occupational therapy
I’ll share details on my experiences with each of these over the next weeks.
Pillar 3) Recover emotionally
First, please bear with me here, this might sound a bit “woo woo” to some of you. I promise there’s research :)
For many people who experience Long Covid or ME/CFS, particularly severe versions, the illness is deeply traumatic. There’s a loss not only of our health, but of large parts of our lives. There’s the agonizing search for medical help, and often the realization that doctors have nothing to offer. Many of us experience not being taken seriously, including by medical providers. There’s the loss of social connections, people turning away. The financial stress of potentially (and for many of us, actually) losing our income. There are very well founded fears for the future. All of that was the case for me. I think most people will have experienced some version of trauma from this illness, even in much less severe cases than mine.
Now here’s where that becomes interesting for recovery. There’s a growing body of research showing that emotional stress (and that includes grief and fear) can trigger inflammatory activity, through physiological processes. If someone had told me a year ago that I could impact my severe physical illness (which had caused organ tissue changes bad enough that they were visible on a crude CT scan) through my emotions, I would have said they were nuts. Totally nuts!!! However, it turns out, newer research is starting to show that our emotions do impact the body on the physiological level. I’ll explain the connection (or what I understand of it) in a later post, but if you’re curious—look into the research of Prof. Ellen Langer at Harvard. Or the work of Dr. Gabor Mate on how stress and trauma can contribute to severe physical illness.
To be clear, Long Covid is not caused by emotions—it’s caused by a virus (duh). The research is very clear that Long Covid is physiological (same goes for ME/CFS and related conditions). It specifically is not the same as anxiety or depression (or caused by either). I’m pointing that out because it is such a common misconception, and a very harmful one—commonly denying patients critical medical care (as happened to me, too). But I do now believe that emotional trauma, including the trauma of the illness itself, of not getting medical care etc., can contribute to prolonging the condition. So I used various emotional tools during my recovery, and have found them extremely helpful. Some examples:
Processing the trauma, e.g. through
talk therapy
group therapy for Long Covid
yoga therapy for trauma
Processing (and learning to hold) the fears
Processing the grief
Re-connecting with joy
Celebrating wins
I’ll share more on how I used those tools (and others) in future posts.
I also want to say that while I did a lot of different things, I don’t think all of this is necessary. In fact, knowing what I know now, less might be more. The broad categories above will resonate with many (if not most) people who have recovered, so you might want to be aware of all of them. But within them, I’d recommend you pick and choose something that works for you, and stick with that.
What’s next
I’ll dive into each of these pillars and tools over the next weeks, and I’ll start with the foundation - the knowledge that helped me, and where I found that.
Lastly, this post might make my recovery seem all look neat and logical and straightforward, possibly even simple. Tools, a framework, research. Easy, right?! But while I was in it, it was everything but straightforward, and certainly not easy. It was the hardest thing I’ve ever done, by far. It was confusing, frustrating, and many times I felt completely hopeless. Trying random tools out of desperation, based on a stranger’s post on social media. Not understanding (back then) how these tools were supposed to be relevant, and being more than skeptical about many of them. Trying them anyway because there wasn’t anything else available. Much later, thinking I had finally figured out a path, and started to connect the dots, only to slide backwards. Only in hindsight, and with many months of research and practice, it’s become straight forward.
So I’ll dive into the foundation next time (update: here’s the first part of the foundation), and we’ll go from there. Again, I don’t have all the answers. But I’m hoping that you find something in here that might be useful.
In the meantime - please let me know your questions, if you’re finding this helpful, and what you are most interested in! Thanks so much for your support.
I’ll leave you with some more hope. The photo below is from one of my first short outings, after months of being bed- and then housebound. 15 minutes away from home, just leaving the house for a couple of hours, my friend Craig driving me. It felt incredible!!! We had my cane in the car, just in case. But I didn’t need the cane. Much more importantly, I didn’t crash / get PEM afterwards. Why? Because I had first carefully built up to this point, for weeks and months. And because I stayed within my (then) limits. I was impatient—there was nothing I wanted more than staying, hanging out at the beach, going for a longer walk. But I knew that I wasn’t there yet. And I knew that if I stayed on my path, I’d be able to do more soon. And eventually recover. Nothing was more important than that.
All my best,
Nicole
Thank you for sharing your story 🙏
Very insightful and helpful! Thank you Nicole!