Life after Long COVID

How I'm doing, what I've been up to, some hard earned learnings, and what's ahead

It’s been a while that you all heard from me! Life’s been busy (in good ways!), not leaving much space to sit down to write. I’ve been thinking about a new post for a while, but most of my “up next” topics were too big and daunting to tackle. A life update somehow seemed too mundane to share (ah, the standards we place on ourselves). But then, thinking about it more, I realized that a mundane life update after recovery might actually be exactly what someone needs to hear. So here it is 🙂

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Hi, hello!

It’s almost a year to the day that I started this newsletter, and shared my first post, on What Long COVID was like for me. Super scary to hit that “publish” button at the time, but I’m really glad that I did.

Reflecting on these last twelve months, a LOT has happened. Do you know that feeling, when it seems for a while that nothing much is happening. And then you look back, and in hindsight it looks totally different? My recovery was like that, and this last year was like that, too. In the last 12 months, I relocated to a different country & continent (hi from Berlin!). I moved into a new home. I started a new job. I (re)built my social circles in a new (or new again) city. I started this newsletter and shared my story. I completed my training as a breathwork coach. And I attempted plenty more things that didn’t work out, like dating, or fully furnishing my apartment, or not setting dinner on fire when I had a friend over recently. So all to say, it was a lot for 12 months! And, the most important thing by far - somewhere along the way, I “wrapped up” my recovery.

Fully recovered?!

Earlier today, I found a months old unfinished post titled “Officially recovered” sitting in my drafts. I never finished that, and I’m not sure I otherwise mentioned it in a post along the way, but: I am officially fully recovered. I write this so clearly, because I know how important this is for many of you (judging from detailed questions I’ve gotten on my previous posts, and also from my own questions early on, when learning about others’ recoveries. It mattered to me to hear that someone was fully well again, vs. just a lot better, because I wanted to know that it is possible). So here it is: I’m feeling 100% healthy, all of the time (ok, not when I had the flu a couple of months ago, but you know what I mean).

Recovery from something so severe is weird, it’s not like one day you wake up and you’re feeling healthy (at least, that’s not how it worked for me). There wasn’t a particular moment or day that marked it. After months and months, I was back to 80%, 90%, but it was still up and down. I remember the first day I felt totally normal, which was last January, and that felt momentous. Wandering around the city, I noticed that I didn’t have any of the heaviness in my limbs that was still normal at that point. I also noticed that day that I wasn’t getting tired from walking, despite a rather long walk. Those were the initial days that felt like 100% again. Then those days became more frequent. Eventually, I felt at 100% most days, with some days where I still experienced symptoms. This is when I first tried skiing again, and started running again, still careful to not throw my recovery back, yet again. Then, the days with symptoms became rarer and rarer, and eventually, there were none of those days. Which of course, you only know by absence, looking back. So it’s hard to mark a specific day of “recovery”. I wish I had one, so I could celebrate it for the rest of my life!

Over the last 6 months or so, life’s pace has quickened to the degree that the final stages of recovery already seem far away, which I know is an incredible luxury. The “Officially recovered” post I mentioned, already feels outdated now, just a few moths later. My memory of the experience of severe illness is fading more and more.

The shifting of memory

Last year, mostly recovered physically, the memory of it all was still fresh, and very close to the surface. “Regular stuff” often seemed kind of irrelevant in comparison to all I had been through. I was deeply shaken by it all. Shaken by losing my strength, to the point of barely being able to take the few steps to the bathroom. For months. Shaken by not having enough energy to sit upright for a few minutes, that such a thing was even possible. By losing my ability to do every small thing, bit by bit, not knowing why, or how to reverse it. By the fact that there wasn’t much medical help, and the hoops I had to jump through for it. By the clinic waitlists of many months for even an initial visit, despite my state being so severe that I required full time care. Shaken by how big the cracks in our medical and insurance systems are, when you have a condition that’s not yet well understood or researched. By seeing my life completely fall apart, within months, not sure when (and if) I’d be able to put it back together. By how many people this happens to, mostly women of course, by how there’s not nearly enough research, and how nobody seems to care.

It’s all still hard to understand, and all of it still makes me deeply sad. But, and this is crucial, I do not feel shaken by it anymore. This feels like another marker of having my full strength back, emotionally as well as physically. I’m very, very grateful for that. These days, I barely think of Long COVID anymore, and when I do, it tends to be focused on the positive that the experience has brought me, too. More empathy, more self-knowledge, more vulnerability. Deeper relationships. More patience. To be clear, it was not a positive experience (ha), and I still think it’s absurd to tell someone going through this to “be positive” and the like - that’s not what I’m saying here. What I’m trying to say is that my mind has processed it all to the point where I am at peace with it, if that makes sense, and so the positive elements that have come with recovery now tend to be in the foreground. I know that is very lucky.

One other fascinating aspect of recovery is that I now have trouble recalling what the illness felt like in my body - which is wild, given how severely several of my bodily systems were impacted, how physically difficult that was to bear, and that I lived in that state for the better part of a year, experiencing severe symptoms every second of every day. To my surprise, it takes effort now to recall the actual feelings in my body (not that I try often, for obvious reasons). I am grateful that the memory has faded.

I think all of this shifting of memory is a protective mechanism in our brains, courtesy of evolution, ensuring that we can continue to live our lives after experiences like this. I’m sure glad it is working.

Another (kind of funny) marker of feeling fully well: normal day-to-day problems reappear! This makes me laugh now. Problems that had paled in comparison before. Being frustrated with a work situation, a flat tire on my bike when I’m already running late, losing my headphones. I love having regular problems again! Frustrating in the moment, but what a huge privilege they are to have.

What’s left

What has stuck around is an intense feeling of gratitude. I’m overall happier than I have ever been, I guess the hard won perspective will do that. I’m quicker to shift my outlook and approach, when I’m not. I know deeply now that I can shape my experience of any situation, even if I can’t change the actual situation. Even if that actual situation is, objectively, very difficult - the experience of it is up to me. I’ve been lucky that I learned this before I got sick, in meditation retreats and the like. That had been mostly in theory however, with glimpses of felt experience here and there. Recovery was what really taught me how to do that in practice. I learned to put my mind and body into a calm state. I have the tools now to help me do that, and I have a lot of practice using them. It might still take me a second to remember (or a couple of weeks!), but I’ve definitely gotten a lot better at this. I hope this “muscle memory” sticks around for the rest of my life, even as the memory itself hopefully continues to fade.

Some other changes I’ve noticed - I’ve kept up most of my diet and lifestyle changes “voluntarily” (I still barely drink, keep a healthy diet, do daily breathwork or meditation, earlier bed time etc.), even though that doesn’t feel necessary anymore. It just makes me feel good, and now that I know what good feels like, I like to keep that feeling up. It confuses friends who’ve known me for a long time - let’s just say this is not the lifestyle I had when I last lived in Berlin 😅

Another change is that I am a lot more tuned in to how things make my body feel. I am logged out of social media these days, and (aside from my job) try to be mostly offline, because I can tell how the feeds and screens do not feel good. Similar for my news consumption - I do keep up with the state of the world and politics (important, now more than ever), but I do limit that news time to a fraction of what I used to consume. I speak up more in relationships (friendships, family, dating) when things don’t feel right (very much a work in progress, but positive results so far). I am more vulnerable with the people I care about. I love walking through the city and taking everything in, and I make time for that every day. I notice in my body when I haven’t been outside. I generally spend a lot more time proactively doing things that make me feel good & happy.

What’s ahead

In terms of what’s next - I’m planning to keep up writing here, although for the moment, it will be less frequently. I’m working full time again, which in my case means typing away at a laptop all week. So writing in my free time (i.e., more typing away at a laptop), is not what my body and my brain want. Having said that, there are a lot of learnings I still want to share here - on supplements and nutrients, breathwork, the nervous system. On getting my body to tolerate movement and being upright again, during the early stages of recovery. On physical therapy and rehab. On planning and managing the transition back to full time work (there were learnings!), and a long list of other things. So while it will realistically be sporadic for now, I’m excited to continue this project! If I’ve learned one thing during my recovery, it’s that it’s ok to let things wait.

Connecting with some of you through this newsletter has been one of the best parts of the writing experience. So please keep saying hi! Comments, DMs and email are wide open. I might be slower to respond, but I will, and I love to hear from you. Please keep sharing what you’d like to read about as well - it helps me prioritize, and turn over notes in my head before I sit down to write.

In terms of teaching yoga and coaching breathwork, I am hoping to continue both, too, eventually. That will have to wait a bit as well, given lack of time, but I’m contemplating starting to teach a class in person (no screens this time) later this year (lmk if you’re in Berlin!), or maybe leading a retreat near Berlin or San Francisco at some point. We’ll see where the journey takes me. I’m excited for what’s to come.

Grateful for this ride - thanks for coming along with me!

Nicole

On a walk with my friend Nathalie and my neighbors’ dog!