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

For most people, the risk of contracting COVID is an afterthought at this point. It’s not common to test, mask or distance anymore when people are sick (or, as Amy over at The Tonic put it this week, the train has left the station). And yet, if you are reading this, it’s likely that getting reinfected is still a very big deal for you, with potentially severe consequences to your health. So I wanted to share my experience, in case it helps someone get through it.

Worrying about reinfection, and then not

There was a time where getting reinfected with COVID was quite scary for me, given that the virus had taken almost everything from me the last time. Particularly while I was still in the most severe phase, the consequences of a reinfection could have been dire. The one thing that doctors had seemed to agree on was “make sure you don’t get reinfected under any circumstances”.

And then over the last year, my fear of a new infection gradually faded (and I feel very lucky to be able to say that). This has partly been a side effect of recovery - as my nervous system and immune system function have normalized along with every other body function, I’ve gained confidence in my body’s ability to handle a new infection.

The other part was deliberate work on the fear (more on that below). So recently, I haven’t been particularly worried about it anymore. I knew it was going to be a matter of time, and I figured that I would be fine. And yet, of course, you never know until you know.

A couple of weeks ago, it finally happened.

The most important thing first: I wasn’t nearly as sick as the last time during the acute infection, and it fully passed within days. Now that that’s out of the way, I know many of you have more questions and want to know in detail, and if so, keep reading. I also added a list of tips at the end, and how I prepared myself both logistically and emotionally.

To be clear, my intent here isn’t to make reinfection sound harmless - I am well aware of the numbers, and understand that the risks are there with each and every infection. My intention here is to show that reinfection doesn’t have to mean a setback, and that it can go differently, too, and that there are factors you can influence.

How bad was getting COVID this time?

It was like a medium to bad cold. Not pleasant obviously, but compared to my last COVID infection, it wasn’t bad at all.

For those of you wanting all the details: Sore throat Sunday night, mild cold symptoms on Monday, then on Tue I felt quite sick and did a home test, which was positive. Wed and Thu still quite sick. Symptoms - congested, running nose, sore throat, mild cough, low appetite, pretty tired (no PEM, just tired). I stayed home curled up under blankets on Tue, Wed, Thu. By Friday, I felt a lot better. I stayed home for another couple of days (Fri, Sat), but I didn’t fully rest anymore. I also went for a couple of short walks then, ramping physical activity back up slowly. On Sunday I felt ready to resume life (no more symptoms, testing negative), and I have felt normal since (that was a week ago). So - just like a regular cold for a healthy person.

What did I do differently this time?

The big difference in my behavior was that I took it easy and didn’t push through. I canceled everything and rested 100%, until I felt back to normal. I cancelled every call, every item on the to do list. I rested more than what “felt necessary”, because I’ve learned the hard way that my personal gauge on that is off (the golden rule of recovery came in handy again). I ordered in and I used up food from my freezer, still eating healthily, to support my body. My friend was ready to bring groceries had it been needed (thanks <3), which meant I didn’t need to think about that, either. I rescheduled online job interviews that my “old self” would have totally rallied for while sick (I now know that no call is important enough to risk my health again, and, btw, they can be rescheduled. Who knew). I also resisted the urge to be “productive” at home while sick, e.g. catching up admin tasks from the couch.

I exclusively did what my body felt like doing for a few days - watching Netflix, listening to music, podcasts, knitting, a lot of sleeping. I tried to find joy in being stuck at home, instead of being annoyed with it or bored. There was even a little dance session by myself in my kitchen. Gotta do what the body feels like!

Once I was feeling better, I ramped up my activity slowly, didn’t go straight back to a full schedule - I did a little more every day, testing the waters. I am still holding off on full-on exercise like swimming, probably for another week or two.

The last time, I did the exact opposite. I did not rest at all the first day (I actually walked 20k steps, after 3 hours of sleep, and then flew across the country, while not yet aware I had COVID), and I didn’t rest enough later, either. I kept pushing through at every opportunity, although I truly thought I was resting. Living by myself, I was still taking care of food etc. the first days (I was barely able to order groceries on an app through the brain fog). A few days later, I already rallied again for both for work and personal things, even though I could not yet walk to the end of the block. Sounds crazy, but being sick was just not a “modus operandi” I had, so it didn’t click for me that I shouldn’t be doing things yet, even as I was feeling on the way up. And, of course, once I did feel a little better, I tried to get back to work way too soon, several times, instead of resting until I felt 100%.

So, to sum it up, I did things rather differently this time.

How did I deal with the fear?

This is an interesting one. As I said above, I haven’t really been worried about reinfection anymore the last months. But I knew, of course, that there was a non-zero possibility that it would throw me back into Long COVID. So I did expect some fears to come up once I was infected, and I was prepared.

A year ago, when I first started being able to be in public indoor spaces regularly again, I made a plan for exactly what I’d do in case of reinfection.

The “reinfection plan” had two parts - first, logistics. What would I actually do, step by step, if it happened. Who to inform so they could help me (in case the initial infection got as bad as last time), who could help with groceries, how to get medication if needed. I didn’t want to get caught off guard again like last time, with my closest friends out of town at the time, or without food in the fridge, nor have to worry or be forced to scramble in any way. Having the steps ready helped me know I’d be able to rest fully if it came to it, which made me less worried ahead of time.

The second part of the plan, emotions - how would I deal with the fears that the reinfection might trigger? The nervous system is deeply intertwined with the immune system, and I now know that being in a fearful or anxious state is counterproductive when your body needs to heal, even if it’s warranted. So I made a plan for how to influence my emotions and thoughts, too. I wrote myself a list of reasons why this infection would go differently than the last one, what I would do differently, and a added a link to a podcast episode which I would listen to again if I’d get worried (linked below).

I had that “emergency plan” as a note in my phone, ready when needed. This is part of why I haven’t been worried the last months - anytime I would, I’d just tell myself “it’s fine, because I have a plan”, and that let me move on from the thought. After doing that a few times, it came up less and less. When I actually did get sick, I never even had to pull up the note. By then, I had planted firmly in my brain that I would be fine, and I didn’t need the reassurance anymore.

In addition to that plan, all the practice of proactively getting my nervous system into a calm state really helped. I can tap into that state again easily at this point (I learned that from Dan Neuffer’s work at ANS Rewire, which I’ve talked about here, among other resources. And my meditation practice of many years has certainly helped, too). While sick, there were a couple of moments when I did think “what if I do get Long COVID again” for a second, and I was able to calm myself immediately.

That way, my nervous system could stay in a parasympathetic state and my body in “healing mode”. I am extremely grateful for that practice.

So, to sum it up - I used the tools I’ve learned. I prepared, and then accepted what was happening, didn’t fight it, and tried to make the best of it (finally, an excuse to watch trashy TV for hours).

Things you can do…

… to prepare yourself

• Make a “logistics” plan, so you are prepared to rest fully. If you live alone - who can help you get medication if needed? Who can get you food? Maybe for you it’s other things - like how can you spend the downtime?

• Make a plan for the emotional side too - how will you stay calm and optimistic? Who can support you with that? What can you do if you (rightly) freak out? What resources can you use?

• Make a list of the things you will do differently this time. Make sure radical rest is on there - 100%, uncompromisingly, immediately, and until you are fully back to baseline

• Make a list of other other reasons as to why it will go easy (e.g. other people’s experiences, a previous infection that went easy). Your brain will look for reasons why it’ll be bad again this time (it’s a well-researched cognitive bias that we all have). Counteract that by seeking out and focusing on the positive information instead.

• Listen to Suzy Bolt’s thoughts around reinfection (the fantastic podcast episode I mentioned above). Seek out other reinfection stories to build up your conviction.

Write it all down, so you can pull it up when you need it.

… when you do get sick

• Remember, you prepared for this. Pull up your plan :)

• Cancel everything for a few days. Everything. Even if it’s “not that bad”.

• Reassess after a few days. As long as you’re not 100%, go back to canceling things. Keep doing this until you’re feeling at least 99%. Not 70%, not 80%. Don’t compromise. Nothing else is as important.

• Get support. Even if you think you can do the groceries, don’t. Let others help you

• Relax and do something you enjoy! Watch some TV. Read a book. Podcasts. Talk to a friend. Focus on joy. Breathe.

• Remember your body will handle this, if you let it. Let it do its job and get out of the way. Lots of people with Long COVID go through reinfection just fine.

• Once you feel fully back to your baseline, start ramping up activity slowly (both physical and cognitive). Go slower than you think you need to.

Lastly, know that even if it does throw you back in your recovery - you’ve gotten this far once, you can do it again.

What I make of it all

Given that the last COVID infection took a year of my life, being just “normal sick” was a surreal experience. Feels funny to say, but I am glad I got it again. I’m happy to have removed that final question mark for myself.

While I was sick, a friend asked me “Knowing what you’ve been through, every day of this must now feel like a triumph?” Yes. That is 100% what it felt like.

I am grateful.

Curious how you feel about reinfection? Is there anything else you’d like to know? I love to hear from you in the comments!

Sending good vibes to everyone! Wishing you a joyful holiday, if you celebrate. And if you’re in Germany, Frohe Weihnachten!

Nicole

In the last two posts, I’ve been writing about the diet changes that supported my recovery. In part 1, I shared the science behind the nutritional changes I made (i.e., the why), and then, in part 2, what those changes were (i.e., the what). Today, part 3, is going to be about the how.

Changing my diet was one of the earliest things I implemented towards recovery when I first developed Long COVID, besides rest. This was about two months in, as I was able to do my own groceries for the first time after getting COVID, and right before things got significantly worse and I ended up mostly bedbound for months. With today’s perspective, I made the right changes, but I went about them in the wrong way - namely, I spent energy that I didn’t yet have. So if you take away one thing from this post, avoid the mistakes I made (see later in the post).

How to make a diet change work during Long COVID recovery

Making significant diet changes is not a small thing - it requires research, planning, grocery shopping, and experimenting with new ingredients and recipes - all things that take time, focus, and energy (maybe this is why some vegan or keto people can’t stop talking about their diet ;) Just kidding, I’m with you now!) The nature of the illness unfortunately means that we have less of those resources available than previously - very little energy and difficulty focusing are among the primary symptoms of Long COVID and ME/CFS. For many of us, getting groceries is absurdly hard and will require days of rest, if it’s possible at all. So how do you go about making major diet changes, like those I outlined in my last post, when you aren’t able to? And on an emotional level - when you’ve already lost so much to the illness (social relationships, ability to exercise, ability to go outside, income, career, hobbies, dreams for your future … I could go on) - how do you handle letting go of one of the last sources of joy you still have, eating the food you like?

Here are a few things that worked for me, both logistically and emotionally. Most importantly, you don’t want to make this an additional source of stress in your recovery.

On an emotional level:

• Think of the changes as temporary, particularly when you’re cutting things out. Knowing I’d be able to eat all of my favorite foods again, once I was recovered, helped me not be sad about it (it otherwise would have only added to the profound sense of loss I was already dealing with). It gave me something to look forward to, as well. Try to think positively of cutting things out, as supporting your body through this period.

• Replace things, versus just cutting out. Find a new go-to breakfast, new go-to snacks, new bread (a local bakery in SF sells a grain free one), etc. This doesn’t all need to happen in one go, do it bit by bit, replacing one thing at a time (see below in mistakes I made, too).

• Find things you actually like. Food is comfort, so make sure you find new things you are excited about. Turned out I love a specific dairy-free yogurt (shoutout to Cocojune!), and after finding that I ended up looking forward to breakfast (instead of being sad that I couldn’t eat my usual breakfast foods anymore). I also loved dates with walnuts as a treat. Non-dairy milkshakes (e.g., frozen banana and peanut butter with oatmilk) instead of ice cream. Pineapple turmeric smoothie (or healthy smoothies in general). Lentil bolognese with zucchini noodles instead of pasta. Lots of options.

  

On a practical level:

• Lean on frozen fruit and veggies. Particularly, if doing groceries is difficult for you, or impossible because you’re house or bed bound. Frozen produce has relatively similar nutrients to fresh produce, and is much more affordable and easier to handle (doesn’t go bad and requires fewer grocery trips). I learned this from my rehab therapist in occupational therapy later on. Just make sure that it’s the fruit and veggies only, no other ingredients; or check the labels and find a few healthy pre-prepped options (most pre-prepped meals contain lots of sugar, salt and artificial stuff, which we’re trying to avoid). Please comment if you’ve found any go to options for frozen pre-prepped meals that work with an anti-inflammatory diet - it might help someone a lot.

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• Meal delivery. I know I have huge privilege here - but if you can afford it, and live in an area where this exists, get healthy meals delivered temporarily. I found that Thistle (no affiliation) fit the anti-inflammatory diet recommended for Long COVID recovery really well, and so I heavily relied on this service for months. This is when I was already well enough to heat up food myself, but wasn’t yet able to stand long enough to prepare meals. I was lucky that my job’s employee benefits paid for a lot of it, so if you are lucky to have generous benefits through work, too, maybe that’s an option for you. Truth be told, I kind of hated the taste of these meals after a while, as they repeated over and over and over for months, but they did make things a lot easier during an extremely challenging period. And some of their food was actually delicious. Wondering if anyone has found other delivery options that work well, too, maybe even in other locations? Please leave a comment if so.

• Get some cookbooks on anti-inflammatory foods. Once I was well enough for it, I found exploring recipes enjoyable, and it gave me something to do with my time. Looking at paper cookbooks was easier on my inflamed brain than looking at screens. Once I was starting to feel well enough to prepare food myself again, it was fun to experiment. There are lots of books on the anti-inflammatory diet these days - I like the recipes in this cookbook, and this one (in German), this healthy ice cream book, this one on grain free baking. I’m still exploring here and always looking for new resources, so comment your favorite ones if you have any!

• Get support. Most importantly, my friends & family who supported me with food were super crucial to my recovery. There were months where I was barely able sit up for long enough to eat, and sometimes not even that. My mom made sure I had enough food, and she was ultimately the one implementing all of the diet changes, not me. My friend Craig often cooked for us both, many dozens of times along the way, and experimented with recipes and ingredients for months. He found new options that fit the restrictions when I got sick of eating the same things (a lot of the recommendations above were his discoveries). My friend Benjy did our groceries for months and also cooked and experimented for us (lentil bolognese above!). When my mom had to leave the country because her visa was up, my friend Iz helped us find a paid caregiver, who initially came every day to heat up the delivered meals, and was truly wonderful and a big support (I’m very aware of my privilege here - I was very lucky that I could afford her help, and I’m really not sure how it would have all worked out otherwise). Other friends and neighbors kindly brought food and worked around my new dietary restrictions. I could not have done it without all this support, and I’m very, very grateful. I hope you have deep support on your journey, too.

The mistakes I made (so you don’t have to make them, too)

There are a few things I’d do quite differently now, if I had to do it again, knowing what I know today. Maybe you can learn something from my mistakes. Most of all I’d say, go easy and be gentle when making changes.

• I changed my diet too quickly, too radically.

  • When I first made the changes based on Dr. Kuon’s book, I was still able to research and prepare food myself. I wanted to get well asap, so I went all in, immediately. This took a lot of energy and focus, at a time when my body had very low resources. So in hindsight, making a drastic diet change, having to figure out new recipes, new ways to cook, different groceries to shop (when I was still too weak to do my groceries at all) probably contributed to overwhelming my nervous system even more, and to a further slide downwards around that time.

  • I’d now do this much more gently and slowly, over months, rather than making a drastic and complete change to my eating habits in a single weekend, while severely sick (Ouch. I’ve learned a lot ✌🏻). I wanted to be back on my feet in a couple of weeks, not in months. Turns out, it doesn’t work that way. So be easy on yourself, make one little change at a time, nothing drastic. Give your body and yourself time and grace.

• I followed the advice too closely, too strictly, and I didn’t personalize it.

  • Once I had learned about leveraging diet for recovery, I wanted to do it right. Of course, I totally overshot. For example, the advice in Dr. Kuon’s book was to reduce salt intake. I didn’t adapt this advice to the fact that my diet was already pretty low salt, compared to the average US diet, and I reduced my salt consumption further (also, to be fair, this kind of stuff is impossible to gauge, if you’re not an expert). I ended up taking in very little salt at all, thinking that would help my body. In hindsight, I think this might potentially have contributed to my developing POTS during the course of Long COVID. I only later realized by trial and error that more salt was actually helping my POTS symptoms, and then I quickly course corrected and my POTS symptoms started getting better1 (funnily, I realized this based on my friend Benjy’s excellent chicken soup <3, a story for another time).

  • So my advice here would be to make changes more one by one, go gently, no extremes. Listen to your body.

I had a conversation with about this a few weeks ago, as I was preparing this post (check out her blog!). It sounds like she’s made very similar experiences, and she put the learnings a lot more succinctly than I could.

In her words:

My top tips when it comes to making dietary changes that support improved health (or the ones I started with in any case):

🔹 let the body lead

🔸 ease pressure to be perfect

🔹 recognise it’s not something (another thing!) to get ‘right’

🔸 get clear on your main objective (for me it was to reduce inflammation in my body)

🔹 make sure your objective aligns with what you want. What is it that you want? (For me, it was wellness)

🔸 when it comes to the doing, do only one thing at a time. Whether that’s a change in milk you use, a new supplement you take or reducing/cutting out a food group (like sugar, gluten or dairy). ONE THING.

I could not agree more.

So, if you want to start experimenting with diet during your recovery (or want to give it another shot), I’d suggest this:

1. Pick one or two of the changes I shared last time, ones that you feel you can implement

2. Implement them gently, building up your changes over time.

3. Celebrate the changes you’re making, and be kind to yourself.

4. Listen to your body as you do this, and adjust if needed.

That’s all I got here - hope these learnings are helpful. Curious, what as helped you make changes along the way?

And lastly - you might have noticed I haven’t been posting the last weeks. I’ve been deep in job interviews, I graduated from my 300 hour training as a Holistic Breath Coach (yay!) and I also led the first iteration of my breathwork for recovery program (I really enjoyed it and the feedback was that it was helpful. So I might do it again next year if I have enough time! Feel free to message me if you’re interested and I’ll keep you posted).

I’m hoping I can get back to writing more here in the next weeks, I still have a long list of things I want to share. Here are a few I’m thinking about - curious what’s most interesting to you?

Thanks for reading this far! Please let me know if it’s been helpful, and until next time. Happy holidays to everyone who celebrates!

Nicole

One thing before I start: Thank you everyone who reached out about the “Breathwork for Long COVID Recovery” coaching program I mentioned last time. I’ve settled on dates, and it’ll run mid October to mid November (four weeks with one 1:1 session each). Right now, I have 2 spots left. Respond to this email or message me if you are interested, happy to answer any questions!

Secondly, those of you who read this regularly might have noticed—it’s been a minute! It’s been a really busy month for me. Job interviews, moving apartment, trying to furnish the new place (so far, failing - I’m still sleeping on an airbed a month later lol), planning the breathwork program, plus some required travel, all happening at the same time. I also ran my first workshop as a breath coach, at an event for startup founders & investors a couple of weeks ago, too, which was super fun. So, a lot going on! It was honestly pretty overwhelming. With all that happening and timing to large parts outside of my control, I made extra sure to continue to take good care of my body, which meant that I had to press pause on a few things (like writing the newsletter), and do others more slowly than I’d like (getting furniture, responding to messages - sorry everyone!). And I’ll make sure that the next few months are more restful again as I catch up. But it’s been an exciting month, and it feels awesome to be able to handle that kind of pace again when needed.

So much for my life update, on to nutrition.

In my previous post on diet during recovery, I shared what I learned about inflammation and Long COVID, and the diet that the UCSF1 Long COVID clinic recommends to help tackle it. So now that we’ve established that bringing down inflammation is key, and that we can impact inflammation with our diet, what did that mean for me in practice? That is what this part 2 is about. If you’re new here (hi & welcome!), nutrition is part of the physical tools in my recovery framework.

The changes I made to my diet during recovery

Firstly - diet is very individual, every body is different. You’ll need to figure out what works for your specific body, so take this with a grain of salt - I’m sharing here what worked for my body. I also assume that if you’ve had Long COVID for a while, you might have already experimented with diet, and tried some of the same things—maybe they have helped, maybe not. It’s often hard to figure out what works, because it’s so tricky to isolate the changes we make, and nutrition changes take a while to work (inflammation needs time to resolve). That’s why it’s important to know why certain foods can impact our health positively or negatively, and under what circumstances. It’s an ongoing journey of research for me. I suggest if you’re new to this, then start with my last post, which goes into the why. Today’s post is on the what.

So here is how I adjusted my diet, practically - my protocol. In summary, I went on a very strict anti-inflammatory diet, with some tweaks relevant to my specific body. This was primarily based on Dr. Kuon’s2 advice - as shared last time, but I found other sources too, once I had understood they key ways I needed to support my body.

What I ate more of

There are explanations to why each of these are important in reducing inflammation and promoting cell healing, so let me know in the comments if you have questions - I’ll focus on the “what” today, not the “why”.

• Incorporating more whole grains, vegetables and legumes (this has been the foundation of my recovery diet)

• Increasing my fish consumption, trying to eat it most days - in particular, omega-3 rich ones (e.g., salmon, black cod, anchovies)

• Incorporating “superfoods” like blueberries, chia seeds, shiitake mushrooms and turmeric, which have a lot of antioxidants and anti-inflammatory agents (I used to think that “superfoods” were mostly marketing, but changed my mind after learning more)

• Switching to all organic fruit and vegetables (I know this is cost prohibitive for many people - check the UCSF handout in my last post for the “dirty dozen”, the produce types for which it’s most crucial to go organic, due to the high rate of environmental toxins in the conventional version)

• Drinking sufficient water, like 1.5-2L / day. I always find this hard but I paid extra attention to it during recovery, and everyone around made sure I was drinking my water, too. Hydration is always important, but crucial during recovery (biochemical processes like cell repair, clearing toxins etc. require fluids to function properly).

• Incorporating more (healthy) protein - as someone who doesn’t eat a lot of meat, I did not have nearly enough protein in my diet at that point (might be different for you!).3 Protein is important in cell healing, and given the cell damage that the virus had caused in my body, I needed to provide my body the building blocks to repair itself. This meant a lot of fish and tofu, legumes, nuts and seeds like chia, quinoa, hemp seeds etc. A LOT more than what I was used to.

So far, so good. That was the fun part, unfortunately.

What I cut out

There are also a lot of things I cut out. During the worst months, I was 100% strict about this, which was rough. I love chocolate and various comfort foods, and it felt like the illness had already taken so much from me - the joy of eating was one of the last things I had left. What helped me do it was to see the restrictions as temporary (more on that next time), and to stay focused on the much bigger goal - getting my health back. In comparison, cutting out almost anything for a few months felt like a very small price to pay.

• No caffeine. This one might be counter intuitive if you’re fatigued, but cutting out caffeine is crucial to our nervous system normalizing, which in turn, is key to our body’s ability to heal. I’ll write about the nervous system another time (I keep saying that! lol. I promise), but in short - you want to avoid anything that activates your sympathetic nervous system. Caffeine does that, unfortunately, so it’s important to avoid it while you recover.

• No refined sugar. Same re nervous system—sugar is also activating. In addition, it’s generally bad for our health - so I tried to not burden my body even more, while it was struggling to heal.

• No alcohol. Same re nervous system, plus it’s quite literally toxic to the body (don’t get me wrong, I’m a fan of a drink in general, but when the body is struggling so much already, it is not the right time).

• No highly processed foods. The body needs nutrients. Highly processed foods don’t have as many of those. In addition, these foods contain a whole lot of harmful ingredients - additives, chemicals, unhealthy kinds of fat, sugar—that your body might struggle to process in its current state.

• Very little meat. This one was relatively easy for me since I wasn’t eating much meat before anyway. During recovery I made a couple more changes—I ate no processed meat at all (see above), and if I did eat meat, it was poultry. Meat has been shown to be inflammatory (in particular, red meat).

• No gluten. Gluten is inflammatory for many people. This was maybe the hardest, as I had a pretty pasta-heavy diet (the good life, I know), and I love sourdough bread.

• No dairy. I switched to non-dairy instead. Same as gluten, it’s inflammatory for many people.

These changes were mostly based on Dr. Kuon’s advice from her book and the information from the UCSF Long COVID clinic (I shared that last time). In her book, Dr. Kuon provides a lot of detail and scientific background around each of these recommendations. My other sources included the Stanford PACS (Post Acute COVID Syndrome) clinic (which recommends the same anti-inflammatory diet), Michael McCulloch at the Pine Street Clinic (see footnote) and the resources I mentioned in this post - by Dr. Andrew Weil and Dan Neuffer at ANS Rewire.

In case you’re wondering what remains after cutting out so many things - good question. I’m not going to lie, I found it very difficult. My incredible mom and incredible friends were a really big part of making this work. I’ll share some tips next time on what made it a little easier. But mainly I’ll say, depending on your specific body, food intolerances etc, you might not need to be nearly as strict as I was and still see good results - from what I understand, every little shift in the right direction counts. More on that next time, where I’ll write about my mistakes in making these changes.

What I eat today

Since I started feeling better, I’ve also relaxed my restrictions more and more. But, interestingly, I’ve kept a lot of these changes despite feeling better. During recovery, I’ve developed a really finely tuned sense for my body, and now I can often feel a clear & immediate impact from changes to my diet (whereas when I started recovery, I could not tell a difference for months). But I’m certainly not strict about anything anymore - ice cream is back in my life, and it’s glorious :)

Next time, I’ll write about how I made these changes work during recovery, when I had very little energy. I’ll also share some major mistakes I made (like over-doing it, of course), so you can avoid those.

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I’m curious - what diet changes have you made during recovery? What’s been working for you? What questions do you have for me? Leave a comment below!

Nicole

In my recovery framework, today’s post on inflammation and diet during Long COVID is part of the pillar physical recovery tools, or “rebuilding the body”. Here’s how it fits in:

A lot has been written on diet and nutrition, and what you eat is obviously a super personal decision. This is even more the case if you’re dealing with chronic illness. I personally learned a lot on diet and nutrition during my recovery, and it’s caused fundamental changes in what I (want to) eat. So I’m sharing what I learned, and you can take the bits from it that feel relevant to your own journey.

I’ll split this up into two posts, the first one today is about the theory - why diet is relevant to Long COVID recovery, and how inflammation plays a role in the illness. The second post in the next weeks will be the practical part, i.e. how I adjusted my diet during recovery. I’ll share what changes I actually made, what made those changes easier, and the mistakes I’d avoid if I’d do it again.

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How I learned about nutrition and Long COVID

I always thought I had a pretty healthy diet - it was part of my lifestyle, like for most of the people in my fit & active circles. So when I first started reading about diet, inflammation, and Long COVID, I was surprised that not everything I had assumed to be healthy food was actually good for me—let alone able to support recovery from severe, multi-systemic illness.

I wasn’t looking for information on diet or nutrition particularly - my symptoms didn’t seem food related in any way. I came across nutrition and diet by chance, reading Dr. Carla Kuon’s book on Long COVID recovery (I’ve linked to it previously, see here). Months into my illness and recovery, and after many medical dead ends, I was finally lucky to get into treatment with her at UCSF (for those not in the US - University of California, San Francisco, a leading teaching hospital). That treatment initially consisted of 3 group sessions, the first of which was entirely focused on diet. With Dr. Kuon’s permission, I am including the handout from that session here: UCSF handout on Long COVID, inflammation and diet. (Thank you Dr. Kuon for very generously letting me share this publicly!) I’ll be sharing the handouts of the other two sessions (one on supplements and nutrients, and one on stress physiology and exercise) in future posts.

Inflammation and Long COVID

So, why is diet is so important in Long COVID recovery? One of the key drivers for the persisting symptoms in Long COVID is inflammation in the body, per research by Akiko Iwasaki at Yale1.

The way Dr. Kuon at UCSF explained it, “COVID can kick off inflammatory pathways in the body to such high levels, the body is unable to resolve them without added help.”2 According to her, there are 5 drivers to inflammation in Long COVID:

• Classic inflammation

• Histamine-related inflammation

• Autoimmune-related inflammation

• GI (gastro-intestinal)-driven inflammation, and

• Neuro inflammation

Patients can have one of these drivers, or several. This is why symptoms can vary so much between people with Long COVID, and why it’s hard to diagnose. Dr. Kuon explains each of these types of inflammation in great detail in her book, if you’re curious (I’ve linked to the book here).

She also writes that “Long-term inflammation can affect everything negatively from head to toe”.3 For example,

• Brain —> cognitive dysfunction, memory loss

• Circulatory system —> heart disease, stroke, blood clots

• Immune system —> Lowered immunity, frequent viral infections

• Etc.

This really clicked for me - it was the first explanation I heard that shed light on why I was experiencing such a broad range of serious and seemingly unconnected symptoms, and how even the most basic things in my body were not functioning properly anymore.

So why does that inflammation not just resolve, like after other infections? You know, when you might have a fever or other symptoms for a few days, and then get back to normal and move on with your life? The way I understand it now, COVID (and other viruses) can, if you’re unlucky, totally overwhelm the body. That overwhelm disturbs a range of processes in the body, and knocks them out of balance. These processes usually run in the background, as you go about your day—like turning food and oxygen into energy, repairing damaged cells, fighting off bacteria and viruses, removing toxins, hormone production, etc. Because they are all interconnected and interdependent, once they are knocked out of balance, the body can have a very hard time shifting back into equilibrium. We can support it however, by supplying the right nutrients, i.e., the building blocks for all the biochemical reactions that need to take place (see Dr. Kuon’s book for details, I found this all fascinating).

How to address inflammation during Long COVID recovery

The good news is that there are things we can do. We can supply these building blocks in higher quantities, directly addressing the excess of inflammation, and help the body shift back. According to Dr. Kuon, the main levers for reducing inflammation are (1) proper nutrition and anti-inflammatory diet, and (2) anti-inflammatory supplements (I’ll write about the supplements another time).

The first important thing is that a healthy diet is very individual - people have a wide range of food intolerances, for example. There is a common denominator, however. According to Dr. Kuon, this is “a plant-based diet rich in anti-inflammatory foods such as the omega-3 fats, rich in antioxidants, and which avoids pro-inflammatory foods”.4 She recommends this anti-inflammatory diet as the basis during Long COVID recovery (to be adapted if you have additional conditions or complications, like histamine intolerance).

Dr. Andrew Weil, who pioneered Integrative Medicine in the US, created the pyramid below as a summary of the anti-inflammatory diet, showing which foods should be eaten in roughly which ratio:

You can explore this in detail on Dr. Weil’s website.

Like most of you presumably, I had seen this pyramid many times before, and was generally eating healthily. But reading in detail how certain foods contribute to inflammation, and how inflammation is a huge driver for Long COVID, it hit very differently. I shifted from eating “generally healthily”, to implementing this diet very strictly.

I’ll stop here for today, and share next time what I actually changed (to me that pyramid above doesn’t really cut it, so I’ll share a list of actual things I ate more of and less of). I’ll also share what made that major diet change easier during an already very challenging time, and some major mistakes I made in the process (so you don’t have to ;)).

Let me know if you have specific questions, and I can try to answer them next time! Also, I’m curious what’s worked for you diet-wise during Long COVID?

Take good care of yourself,

Nicole

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PS (unrelated topic): As I’ve mentioned before, breathwork has also been a really impactful tool in my recovery. Based on that experience, I’ve been training as a breathwork coach since March, expecting to graduate in November (will share more of my learnings here soon!). I’ll have 3 spots for 1:1 breathwork coaching available during this final phase of my training (at a reduced rate). A great opportunity if you’ve been wanting to explore breathwork as a recovery tool, or if you’re already using it and are looking for 1:1 support. Details here

Hi friends, hello!

It’s been a few weeks since I’ve posted. Between enjoying the summer, a bit of travel, continuing my breathwork training and sorting out some big life stuff (all good things!), I haven’t been able to carve out much time for writing. The weeks slipped by, and I guess that’s how summer goes, and should go!

In the last few posts, we’ve started looking at the first two pillars in my recovery framework: tools to recondition the nervous system, and tools for rebuilding the body. Today I’m going to share the first tool out of the third pillar: the emotional side of Long COVID, ME/CFS and recovery. I want to talk about the importance of hope, and what helped me keep it.

Today I’m going to share three of the tools I used. There were more, so I’ll likely write another post or two on this in the future, as well.

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Mid last year, a few months into Long COVID, my health had declined so much that I had become completely confined to bed. There was no explanation from doctors, I was just told that there wasn’t enough research yet. We had tried all the available medications, and they either did nothing, or had made me worse.

While trying to find answers, I frequently came across recovery prospects. The numbers did not look good. They were generally somewhere in the single digit percentage after a couple of years, with no longer term research available yet. The recovery numbers for the very similar ME/CFS and other post-viral conditions, where there was longer term research, looked even more bleak. The prospect of spending years or even decades in bed, requiring round the clock care, and in extreme discomfort every day, were, frankly, horrifying. If you’re here reading this, I probably don’t need to tell you that.

Why hope is crucial in recovery

At that time, I had an intuitive sense that it was really, really important to keep up my hope, despite the daunting prospects. I didn’t know it then, but I do now: Emotions directly impact the nervous system (I’ve tried to explain this here), and the nervous system, in turn, is a key influencer to our physiological responses, including those involved in healing and recovery (several of the resources I shared here do a great job explaining the physiological mechanisms).

That means in reverse, that if we maintain hope, we can positively impact our nervous system, fostering a state in the body conducive to healing and recovery (see here and here, too). This is particularly important in conditions with nervous system involvement, like Long COVID and ME/CFS. I’ll explain all this in more detail in a future post, today I want to focus on practical tools.

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So knowing how crucial hope is— how do we find it? Particularly, when we aren’t getting much hope from doctors?

I used several tools to do that - at the time, mostly intuitively, and later I learned it in a more structured way from the online program I mentioned in my foundational resources post, ANS Rewire.

Tool 1) Being delusional :)

Like most people, when you have doctors shrugging their shoulders and you know the low recovery prospects, it was hard for me to keep hope. There were a few weeks especially, before I found things that gave me glimmers of hope, when I didn’t know how to deal with it all - I just tried to get through each day, supported by a couple of close friends and my mom.

Eventually, however, despite this rationally not making a whole lot of sense, I started focusing on the fact that some people do recover within a year or two, even if it’s only a very small fraction. I started telling myself, Why can’t that outlier be me? Statistics are real, but they only represent general trends, not individual outcomes. Each person’s health journey is unique, and there are always outliers. So this small possibility is what I focused my mind on.

I also learned that there was a lot I could do to influence my particular odds, even from where I was at the time. So I made a point to focus on the stories of those who were in a very severe state like me, and who had recovered. And on what I could do to become one of them.

I made sure to spend what little energy I had on taking active steps towards recovering my health, every single day (here’s my overview of active steps I took, and I’ll write more on my daily protocol in that time, in a future post). I spent as little time and energy as possible worrying. Admittedly, worrying is hard to avoid when the body is not cooperating at all, even with the absolute basics, serving as a constant, harsh reminder. When you can’t see any improvement for months. When, on top of that, you’re reminded of the objectively dire prospects almost anywhere you turn in your search for answers and help. So it wasn’t possible to push the worrying aside completely (for me at least, initially). But I when I did worry, I tried to notice that quickly, and actively engage in strategies to distract myself, and to remind myself of hope (see next tool). This was a process, it wasn’t immediate for me— but I got there once I put my mind to it. It’s a learnable skill. Already having a meditation practice really helped with this, because the noticing and redirecting of thoughts is what you practice in meditation. I’ll write more about that in another post, too.

On the other hand, I also started to ignore (!) all the research and any articles citing the low recovery prospects. For someone who thinks of themself as a pretty rational and science-focused person, that was a very big leap. In other words, I was, deliberately, becoming a little delusional. To be clear, I didn’t think that those data points were incorrect — I believe that they are objective. However, it was clear to me that focusing any of my attention on them wouldn’t help me, and would in fact impact me negatively (my mental health at a very minimum, but likely also my physical health). If my options were A) be delusional and get 1% better, or B) be completely objective and not get better, then I’d take the 1% improvement every time. If you also find this difficult (I did at first), think about it this way - we all know that the Placebo effect exists, i.e., that what we believe impacts our health. Why not use that effect to your benefit?

I applied the same tactic, ignoring anything that wasn’t useful to recovering, to any other data points on the seriousness and irreversibility of my illness - the consistent stories of people sick much longer than me, new research showing irreversible damage that the virus can do, whatever else. I ignored all that. I left Facebook groups, unfollowed people, stopped reading anything that pointed in that direction.

Tool 2) Keeping a “Hope List”

Another helpful strategy was keeping a list of promising things to try, which I’m going to call my Hope List. This list included possible treatments, medications, knowledgeable providers, online programs and other recovery tools. I found those in forums, books and articles, and heard from other patients, and eventually also from the two doctors I found who had expertise in Long COVID. Anything and everything that seemed like it had potential went on the list.

The list wasn’t fancy - just a note on my phone. It was initially just meant as a mental crutch, helping me remember options while coping with severe cognitive symptoms like loss of memory. This note over time turned into a “backlog”, a roughly ranked list. Whenever one treatment hadn’t panned out, and it was time to pick my next “bet”, I’d look to this list.

Systematically, I went about trying the options on my list. Each intervention could take weeks or months to show effects, and I had to try and isolate its effects before adding something else (this was in case a treatment were to make my condition worse, as had already happened with several medications). So trying things one by one took a long time. It was key to be selective about what to try.

The treatment options on my list ranked from “backed by solid scientific evidence” to pretty obscure / untested options, so knowing what was most worth my energy and resources was key. I developed best guesses (just gut feeling, again nothing fancy) for which options

• (1) were most likely to yield positive results,

• (2) had the lowest risk of adverse effects,

• (3) and required the lowest investment in terms of energy/out-of-pocket costs/trial time.

That gave me a good sense of what I wanted to try next.

But as importantly, this list gave me hope. I looked at it whenever I didn’t know how to keep going, when yet another long awaited doctor’s appointment had yielded nothing but crushed hopes. In those moments, the list was a reminder that there were still options out there for me to explore, and other things to try. It was a reminder that my state of complete disability wasn’t yet the end.

I kept adding new options to this list for almost a year. I kept that up until I was certain that I had found a combination of things that would take me to full recovery. And until my hope wasn’t at risk of wavering anymore.

I’ll share another time what exactly was on my hope list, but for now, here’s what it looked like. Just a simple note on my phone, that was all.

If you don’t have a recovery Hope List yet, I’d highly recommend you start one. It doesn’t have to be fancy (mine wasn’t, as you can see). You can pull it out whenever you need to find hope. And any time your body is in a good enough place to run another experiment.

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Tool 3) Leaning on Those Ahead of You for Hope

If you’ve read my previous posts, you already know that I’m a big fan of recovery stories (a few good sources for them in my resource post). Whenever I doubted if I’d ever be able to get 100% well again, the interviews of other people who had recovered were my reminder that it was indeed possible.

The same is true for people who haven’t fully recovered yet, but are further ahead on their journey, and have advice to share. There was one guy at the Long Covid clinic I was eventually able to attend, who really helped me find more hope, too. During one of the group Zoom calls he unexpectedly messaged me. We had never talked to each other, he didn’t know me, I’m not sure what prompted him to reach out — but I’m grateful he took the time. He said “I was exactly where you are now” (I was bedbound at the time, not able to sit up for the Zoom call), and that he was now back to working 80% in his old job again. Just hearing that he was mostly back to normal life meant the world to me. I’ve thought of that many, many times since. I’m glad he was kind enough to connect. So if you have access to a group coaching program where you’re in touch with others on the same path, those can be a great option (e.g. I’ve heard good things about the Fern Programme, or in Germany, the ReActive Programme).

Benefiting from others who went out of their way to share their stories is a huge reason I’m writing this newsletter— I know from my own experience how important it is for these stories to be visible.

LMK if you think this is helpful, and I’ll share more in future posts. I’m curious - what tools are you using? What has given you hope on your journey so far? How do you cope when it’s hard to hang on to it?

Sending some hope in case you need it today,

~ Nicole

In the last weeks, I’ve started sharing tools across the three pillars of my recovery framework: nervous system reconditioning, rebuilding the body, and emotional recovery. Today I’m going to write about my experience with yoga in Long COVID recovery. I’m going to do that at the risk of being that person who asks ”Have you tried yoga?”. I couldn’t write it anywhere near as accurately (and funnily) as Amy over at The Tonic (emphasis mine):

how many times in your life have you been telling someone about a seemingly intractable physical or mental health concern, only to have them ask this enraging question? (You can also sub in acupuncture, Chinese medicine, meditation, sauna, cold plunges, or any other ‘alternative’ type treatment or activity that may have worked for them, their cousin, or their aunt’s pickleball partner who had a condition that shared maybe one or two symptoms with yours, but was otherwise nothing like what you’re going through).

You needn’t be a spoonie to have experienced this particular form of infuriation. The insinuation that laying or standing on a foamy mat doing sun salutations, downward facing dog, or cat-cow could possibly cure you of your chronic pain or depression seems at once ludicrous and dismissive. This is particularly true when you are at the depths of despair over your condition, when you have had to alter your life so significantly to make room for your illness that you are unable to work, parent, socialize, or engage in life the way you used to.

If the idea that some simple stretches and poses giving you energy or getting you back to work or parenting gives you violent thoughts toward the person who suggested it, you’re by no means alone (and a jury of your peers just might acquit you if you acted on those thoughts). There are memes galore around this very issue.

So, so true. I’ve been there myself1, as I’m sure all of you have, too. And I’ve probably, admittedly, been on the other side without meaning to (ugh). And yet, I’ll talk about yoga today, at the risk of being that person (maybe again 😬).

So first of all— yoga does not cure Long COVID or ME/CFS. In fact, for most people suffering from those conditions, yoga, like other movement, can easily cause symptom increase (PEM), or even lead to a permanent worsening of the condition. I would not advise that. So why am I talking about yoga then?

Yoga, under certain conditions, can be another tool in the nervous system tool box. If done right, and appropriate to the individual condition and stage, it can also help rebuild the body. So here’s where it lives in the recovery framework:

My Experience with Yoga before COVID

Yoga has been a part of my life since 2013. It all started with taking a work trip to San Francisco (I was living in Dublin, Ireland, then). Our SF office was really spectacular (oh hey, SF Tech in the 2010s! It was fun while it lasted, RIP chrome panda). I thought it was the coolest thing that there was an actual gym in the office. A gym! In the office! So American! So Tech! I wasn’t into exercise then (ha), but I decided to take a yoga class, mostly so that I could report back about this “crazy” office gym situation, once back in Europe. Yoga sounded easy enough, and you know— the things we do for small talk material ;) I ended up loving the class and the teacher, so I took several more classes during my stay, and started to practice yoga regularly back in Ireland, too.

Fast forward to 2016, I was by then living in San Francisco. I had gotten more deeply into yoga after that initial experience, and had decided to take a 200hr teacher training with the same teacher, Martin Scott (he’s the best! Hi Martin!). I didn’t know what to expect, and was a little nervous. On day 1, we were supposed to practice chanting. Chanting, WTF 🫠 That was not what I thought yoga teacher training was going to look like (I was thinking exercise, anatomy, …). It really, really freaked me out, and I had a bit of a meltdown inside my head. Maybe the whole yoga teacher training thing, which I had just committed a lot of time and money to, wasn’t for me, after all? Thankfully, I stuck with it. I can honestly say that yoga teacher training blew my mind, and changed my life (chanting included, even though that’s still not very much my thing, but I appreciate it now). Looking back, that was probably when I first started grasping how the mind and body are intertwined. Funny to think about that now, with my hard won perspective of the last year.

How I Discovered Yoga as a Tool for Long COVID recovery

When I came down with COVID in early 2023, and wasn’t recovering as quickly as I thought I would, I was bummed that yoga, along with walks, or any other form of even the lightest exercise, were now off the table. In the first months, as I was initially slowly getting better, I tried some gentle yoga, keen to move my body, just a few minutes at home. It knocked me out. When, over the next months, my health kept declining until I was completely bedbound, it started looking unclear if I’d ever be able to do yoga again at all. Yoga, a core part of my routines for the last decade, and a source of joy, had become yet another thing that Long COVID had taken, along with almost everything else. It was heartbreaking (not the loss of yoga per se, but the loss of every other interest and part of my life over the course of months, with no improvement in sight). It was also really confusing.

A couple of months later, while confined to bed, I stumbled upon an episode of the Long Covid Podcast featuring an interview with Fiona Agombar, an expert in yoga therapy for chronic fatigue. Fiona's insights and experience using yoga to help the recovery from Long COVID and ME/CFS were an eye-opener. I looked up her classes on youtube and found them to be extremely gentle and not requiring much more than lying on my back, breathing, and slow movements. I could do some of that, at least on good days. I was excited! Here was a way to finally start incorporating yoga into my days again, despite my severe disability and limitations. Not going to lie, it was scary at the time. Previously, movement had repeatedly led to my condition getting worse. But I gave it a try when I had a little energy to spare, and it didn’t make me worse on the days after. I started practicing, very gently, lying on my back. I also got Fiona’s book on Yoga Therapy for ME/CFS, so I could understand better how to use yoga during my recovery. I started practicing every few days. I set a goal for myself to get well enough to also teach others on their recovery journey, and that was one of the things that kept me going.

Yoga as a Tool for Long COVID and ME/CFS Recovery

Yoga is an exceptional tool for long COVID and ME/CFS recovery for several reasons:

• It is adaptable to every stage of recovery, making it accessible regardless of someone’s current limitations, including while bedbound (see below)

• Many forms of yoga incorporate gentle movement, which helps rebuild the body, carefully (for those who are able & ready for that stage)

• The meditation aspect of yoga teaches us to listen to our bodies and respect its limits, a critical lesson for most of us (also see my no. 1 rule for Long COVID recovery for this)

• Yoga includes breathwork, which acts like a “remote control” for the nervous system (I’ll write more on this soon).

How exactly does yoga help recovery?

Since discovering yoga for my recovery journey, I’ve been really curious about how it works in the body, and have done a lot of reading (and practicing). So here’s the very short version:

A lot in Long COVID and ME/CFS recovery relates to the nervous system, even if other organ systems (like lungs, heart, digestive organs) are primarily impacted, as mentioned in my previous posts, too. Mindfulness and breathing exercises have been shown to help rebalance the autonomic nervous system (which is often dysregulated in ME/CFS / Long COVID) and strengthen the Vagus nerve, which can be inflamed from the virus (see my last post on tVNS, too). Yoga incorporates both of these— breathing exercises (in yoga, this is called “pranayama”, one of the “eight limbs”) and meditation (“dharana” and “dhyana”).

In addition, subtle movement (“asana”, if practiced very gently) helps to slowly recondition the body, as well as reactivate the endocrine system, which is also often impacted.

Resources

If you’re planning to use yoga in your recovery, I’d definitely start out with yoga specific to post-viral recovery or fatigue conditions. And a heads up— even those recovery specific practices can be too taxing. So please use caution, and always listen to your body, even if a class says “for Long COVID”. You’re the only expert on your body. If something feels taxing, or even close, it’s not right. Best to start low, and then slowly move up.

Here are some resources I’ve found helpful:

• Yoga Nidra (also called NSDR, or “non-sleep deep rest”)

  • This is a kind of yoga you can just listen to, and which induces deep rest. You don’t need to move or even engage your muscles at all, so you can do this when you’re bedbound (and h/t to my friend LJT for introducing me to it).

  • Here’s a great free yoga nidra resource (I particularly like this one). There are lots of others online for free, too. If you speak German, here’s another favorite of mine: Nidra practice in German. My breathwork coach Geeta also has a great Nidra episode on her podcast (in German, too).

• Gentle Yoga for Long COVID:

  • Fiona Agombar, already mentioned above - her live classes are great if you’re in Europe, and she has a few recordings on Youtube.

  • Suzy Bolt's Rest Repair Recover Yoga program is excellent. Most of her classes were way too physically demanding for where I was at the time, but the program does include classes with little to no movement too, like yoga nidra or breathwork, and they are clear about which recovery stage each class is suitable for. Suzy has classes on Youtube, too (I like this one)

• Knowledge:

  • If you’re a yoga teacher and/or you want to learn more, I highly recommend Fiona Agombar's book on Yoga Therapy for CFS. It's intended for yoga teachers, but it's very clearly written and accessible even for those newer to yoga. The section on how CFS (and Long COVID) works in the body - mitochondria dysfunction, nervous system states etc. - is excellent. Worth reading even if you just want to understand the mechanics in the body better, and particularly if you want to teach for Long COVID. I relied on this book a lot when I was experimenting with teaching a small weekly recovery yoga group for a few months (my teaching is far from the quality level of the resources above, but it was fun :))

Which Type of Yoga I Used During Each Stage of Recovery

As I navigated through my recovery journey, different types of yoga served me at different stages:

• 0-20% functionality (bedbound): Yoga Nidra

• 21-40% functionality (couch- or housebound): Gentle Yoga, mostly Fiona’s classes (and a few of Suzy’s that were gentle enough). The idea then was slow and gentle movements to start accustoming the body to safe movement again. At that point I was practicing mostly lying down due to POTS, and was very careful to not overtax (usually waiting a few days between the short sessions, to make sure I continued to stay stable and not develop PEM)

• 41-80% functionality (expanding my movement range): I was still practicing Gentle Yoga here, but starting to be a little more upright (cat/cow, seated poses, working my way towards standing poses and, eventually, even some very gentle, slow sun salutations). I was also in physical therapy for Long COVID towards the end of this stage, and my therapist helped me incorporate recovery exercises into my practice. I practiced about least 10 minutes at home every day.

• 81-100% functionality (mostly recovered): All of the above! I’m still practicing for 10 minutes every day, incorporating my physical therapy exercises. I still use yoga nidra when that feels right. I’ve also started going to regular classes again, once or twice a week. I’m back to Vinyasa and Power Yoga now, helping me regain my full strength, and it feels really awesome to be able to do that. On the other hand, I also went to a Jivamukti class last week, and did not feel right yet. Soon :)

Important: Don’t let yoga intimidate you!

As my teacher Martin says: “If you can breathe, you can do yoga”.

Here are a few sad things I’ve heard over and over for the last 10 years: “I’m not flexible enough for yoga”, “I don’t have the body for yoga”, “I’m too old for yoga”, etc. We’ve done this ancient health practice a massive disservice, by mostly associating it with young, strong, healthy-looking people twisting themselves into complex poses.

Yoga isn’t about that, and it has never been. It's about connecting with your body, listening to its needs, and providing it with the care it requires. That’s exactly what your body needs from you if you’re suffering from a post-viral condition.

If you're unsure where to start— first of all, remember it isn’t about achieving any kind of goals. Just breathe and do what you can comfortably do. That’s all there is. If the resources above don’t cut it for you, you can always seek help from a yoga instructor experienced in chronic conditions, ideally someone trained in Yoga Therapy. They can provide you with a tailored practice and support. You can find an accredited yoga therapist here. Ideally look for someone who has recovered from ME/CFS or related conditions themselves.

Conclusion

Looking back over my recovery, I feel very lucky l that I did that yoga teacher training back in 2016. It opened my mind to the mindbody connection, and helped me build a deep mindfulness practice for the next 8 years. If I hadn’t had that base, I’m not sure I would have trusted the mindbody tools last year, when I needed them. Leaning into all that fully and early, is one reason I was able to recover relatively quickly.

Another big lesson here for me is to always follow my interests— you never know what it’ll be good for! Yoga teacher training back then was not for any particular purpose. Until I suddenly really needed it last year. You can only ever connect the dots in hindsight. Partly due to that, I’m currently doing a 9 months-long training as a holistic breathwork coach. Never know what that’ll be good for, too :) I’ll share more of what I’m learning, soon. Specifically, I’m hoping to use that training to help others in post viral fatigue recovery, maybe with a breathwork course (I’ll see what feels right at the time).

I’m curious— what’s your yoga? Are there any tools or learnings you built prior to getting Long COVID or ME/CFS, that are helping you now? Are you using yoga for your recovery as well? If not, please let me know if you ever try it!

Lastly, some hope from the other side— last weekend I went away with friends for my good friend’s 40th birthday, and I guided a yoga & breathwork session for the group. It was lovely. I’m so grateful that I get to participate in life again, and do the things I love, and share them with others. I know you will, too.

Namaste my friends,

~ Nicole

PS - This week, I’m celebrating 1 year from my personal independence day (sorry America, I co-opted your day). I’ve been reflecting on all that has happened in the last 12 months (it’s been a WILD ride and I am grateful every single day). Celebrating by visiting a good friend in Switzerland this weekend!

PPS - One of you kindly shared another resource that has helped her (in German): Covid Neuro Training. They have a free webinar tomorrow, July 2. Sharing in case it might help someone (sounds like it was particularly helpful during the very severe stage where movement etc. wasn’t possible). Thanks for sharing Nuria!

Hi friends,

Today I’m going to take a page out of my own playbook, and remind myself to do a little less 🙂 Funny how quickly we go back to old habits if we don’t consciously stop ourselves from doing that, consistently.

So this is not going to be a particularly helpful post, no new tools for today :) But I wanted to take a moment to reflect.

It’s been a month since I first shared my story and started this newsletter. I didn’t really know what to expect, and I deliberately didn’t set any goals of what I wanted to achieve. Specifically, I didn’t have any targets for measuring if what I was doing was “working”, or “good enough” to keep investing a significant chunk of my time. That is very contrary to old habits— if you’re in my line of work, then doing anything without set goals and a way to measure “success” is considered bad form (shoutout to my fellow PMs and Growth people!). In fact, lots of friends asked me what my goals were, how I’d know if it was “working”, etc etc. I just shrugged my shoulders :)

I very deliberately just did it. I started writing, and I launched the newsletter. I figured if it’s useful for one person during their own recovery, it will already be worth my time. So I decided to spend a month or two, while I’m slowly easing my body back into a kind of “work mode” experiment, and then see what would happen. I made a commitment to listen to my gut after a month or two, and see how I felt about continuing, and see how my body felt, too.

In classic Nicole fashion, I quickly got so busy writing and making plans, that I almost missed the one month mark. Always thinking about more stuff I could do lol. Can anyone relate?! I think many of you might. Mind you, I’ve been deliberately taking it very easy, spending “only” a couple of half days every week writing. But between still doing my daily recovery protocol, still devoting time to rest, answering comments, sharing my posts so people could find them, and thinking/planning, somehow I got busier than I’ve been meaning to be.

Shoutout to my amazing acupuncturist for calling me out on that already a couple of weeks ago (hi Nikki! You’re the best)

So with that, no “recovery post” this week. And I’ll also potentially move to writing every other week, and over time likely a monthly cadence. I still have a bunch of things I really want to get out there, so for now I’m writing more, but saying it now to hold myself accountable.

I do want to take a minute to celebrate, though. In the last month, more than 160 of you, from 20 countries, signed up for the newsletter. It’s gotten more than 5000 views. It really warms my heart. As I said— IDK what I was expecting, but it feels very meaningful to me to know that there are lots of you all over the world reading this, going through the same awful experience, everyone figuring out their own way to cope and get better. Much more important than any numbers though, is the feedback and reactions I’ve gotten - your comments, messages and emails. Like what Nuria (hi!!) shared about a moment we both shared, without knowing each other. Truly beautiful <3

The platform I’m using shares some reports with authors, and this is my favorite one:

I’m also really grateful for how many of your own learnings and tools you all are sharing in the comments, so that others can find those, too. E.g. in my post re tVNS last week, where you all had lots of advice (scroll to the bottom to see the comments). This illness is so complex and varied, and I can only share what I know, so the more of everyone’s advice is out there, the better. The amazing thing about the Long COVID and ME/CFS community, I’ve learned, is how much everyone is helping each other, despite having very little energy to spare. And the information from the community is ultimately what helped me recover, too. So I really, really appreciate all of your support with this endeavor— feels like we’re doing this together :)

So I’ll wrap it up here, and pick back up in a week or two. But one last thing: A couple of days ago I started an Instagram account, so people can find and share new posts more easily (I know, yet another thing lol). If you’re on Instagram, please share it if you think it might be helpful to others in your network.

Go to Instagram

Thank you!

I would love to hear from you— what’s been helpful about the newsletter so far? If you’re recovering or recovered, how are you reminding yourself to take it easy?

Ok, that’s really all for today. I’m going to go do some yoga now 🙂

Hope your week is as good is it possibly can be,

Nicole

Today we’re going to dive into nervous system recovery and tools, starting off with tVNS, or Transcutaneous Vagus Nerve Stimulation. In my recovery framework, this is part of the pillar “Nervous System Reconditioning”.

If you already have a tVNS device and you’re looking for instructions on how to use it for Long COVID or ME/CFS recovery, you can find instructions at the bottom. If you’re looking for more information on what tVNS is, or how it might help your recovery, keep reading.

Why tVNS?

One of the major take aways from my learning and research over the last year is this: The autonomous nervous system plays a huge role in Long COVID and ME/CFS recovery. It is deeply connected to our organs, including heart and lung, and many of the typical Long COVID and ME/CFS symptoms. I’ll write about this in more depth soon, but for now I want to get into the practical advice, rather than keep going on about theory for months. Although I definitely could ;). You can check out some great resources here in the meantime.

There are lots of tools I used to help get my nervous system back into shape (see my overview). I’ll start with tVNS, because I’ve gotten quite a few specific questions about this.

What is tVNS?

Transcutaneous Vagus Nerve Stimulation (tVNS) is a non-invasive method of nerve stimulation, which you can do at home. It involves sending mild electrical impulses to the vagus nerve through the skin. The vagus nerve is a key part of the parasympathetic branch of the autonomic nervous system, and has been found to influence a wide range of bodily functions and organs. Research suggests that stimulating the vagus nerve can have therapeutic benefits for various health conditions, ranging as wide as depression and epilepsy.

Importantly, tVNS has also been shown to significantly improve Long COVID symptoms in a recent pilot study (Zheng, Simonian, Wang and Rosario, 2024).

My Experience with tVNS

I was pretty skeptical when I first came across tVNS. Firstly, I didn’t think my Long COVID was nervous system related, given that I had gotten several definitive cardiac and pulmonary diagnoses. The nervous system, on the other hand, had never even been mentioned by any of the doctors I had sought out for answers (including a Neurologist). Secondly, it didn’t seem likely that clipping some device to my ear could help with a condition so severe it had left me disabled. Eventually, however, I started understanding the connection of the autonomous nervous system to various organs, including lungs and heart. I revisited tVNS and how it works, and the doctor I eventually found who does understand Long COVID also recommended it. So I decided to try it out.

I ordered the device online, waited a few weeks until it arrived, and then started using it. I incorporated it into my daily recovery protocol. It is simple to use - you just clip it to your ear and turn it on for a few minutes a day. I used it every day and began seeing an effect over the first weeks. I noticed a slightly better overall condition on days when I used it, feeling slightly more stable, the symptoms maybe 1-2% better, versus when I was not using it (to be clear here, my long list of severe symptoms continued to be intense and debilitating. But in that stage, any 1% improvement was a notable relief). I kept using it, and I started seeing a gradual improvement over time.

It’s impossible to isolate effects, as I was doing and trying many different things at the same time (and I’m only an n = 1, obviously). However, understanding how the device works, it is clear that tVNS and the other tools (e.g. breathwork) are all using the same mechanism in the body— rebalancing and reconditioning the autonomous nervous system, which in turn impacts every major bodily function. So I think they’re all “pulling in the same direction”. I continue to use the device every day, along with the rest of my daily nervous system work and recovery protocol.

Affordability

This is probably a good moment to note that tVNS devices are, for now, relatively expensive (mine was ~US$300), which can be prohibitive to a lot of people (particularly if you’re unable to work due to the condition). What is really important to say here: You do not need a $300 device to recover. It can help, but other tools do the same thing, i.e. stimulate the vagus nerve, and recondition the nervous system. Many of those tools are free. I’ll write more about breathwork, in particular, soon (huge fan, and I’ve been diving a lot more deeply into that particular research the last months).

An honest review of my tVNS device

I’ll be honest here, I’m not the biggest fan of the particular brand of tVNS device I use (I purchased it from caputron.com and the brand on the device is vagus.net). I’m not sure I’d buy it again. But I also don’t have a better one to recommend at this point (please share if you do!). So here’s what I can tell you:

What I like

• It’s effective— that’s obviously the most important part. It does the job. Yay!

• It’s simple to use

• It’s small and I can travel with it (now that I can leave the house again!)

What I don’t like

• The battery life is disappointing. It requires charging every hour of use or so

• It frequently fails, has display issues etc.

• There’s a complete lack of instructions. If I hadn’t had my doctor’s pointers (see below), I wouldn’t have known what to do with it, and it might even have affected my health negatively (a huge risk given the severe state I was in at the time)

Overall, it feels bad quality for a $300 device, so if there’s a better one in the market I’d say get that one. But it works “well enough”. I hope that the manufacturer will continue to improve it.

How I used my tVNS device

Given the lack of manufacturer instructions, my protocol is based on trial and error, and what I have learned about the nervous system. I got some pointers by the excellent Dr. Carla Kuon at UCSF, too, when I first started using it (see my resources post for Dr. Kuon’s book, where she refers to tVNS as well). Sharing my protocol here because I’ve gotten a few specific questions, I know many of you aren’t sure how to use it either. Maybe it saves someone that trial and error :)

My tVNS protocol during Long COVID and ME/CFS recovery

Explanations below, in case you want more context

• Important: Use the tVNS on the left ear (never the right ear! See below)

• Clip the electrodes to the tragus (the little bump on the outside of your ear canal, towards the front)

• Adjust the intensity so that you just feel a vibration. Make sure it’s not painful or uncomfortable. If it gets intense or painful even if turned down, I find that using more balm on the electrodes helps

• Start with short sessions - one or two minutes a day, then gradually increase the duration as tolerated (I do 20 minutes now)

• Max 20 minutes a day

• Use it in combination with a calming activity, e.g. meditation or breathwork

Explanations

• Why the left ear? Per instruction by Dr. Kuon, and here’s what I found for context: “Given that the right vagal nerve has efferent fibers to the heart, tVNS is safe to be performed only in the left ear” (Van Leusden et. al, 2015)

• Why not turn it up to higher intensity? You’re trying to calm your nervous system, not put it on alert. Pain or discomfort can activate your sympathetic nervous system response (that’s the opposite of the goal)

• Why calming activity? I use it while I do my breathwork or meditation every day, as those also stimulate the vagus nerve. I would personally not use it while being on your phone or laptop, having a conversation or watching TV etc. See above re avoiding a sympathetic nervous system response

• Why max 20 minutes a day? This is also per Dr. Kuon’s instructions, I couldn’t find anything in the literature. My assumption: to avoid over-stimulating the vagus nerve and risk worsening the vagus nerve inflammation that’s common in Long COVID. Curious if anyone has more definitive knowledge here?

So overall, while it's important to note that mine is anecdotal evidence and may not apply to your body and condition, my personal experience with the tVNS device was positive, and I continue to use it. If you have the ability to invest in a device or get access to one, I’d recommend trying it.

I’m curious- for those of you also using tVNS, how has it worked for you? How have you been using it? Are you happy with your device?

For everyone else- would you try it? Any other questions I haven’t covered?

What else would you like to hear about next, either from this overview or otherwise?

All the best,

Nicole

Today’s post is part of the physical tools I’ve been using for my recovery, working on the body directly. (If you’re new here, hi! You can read about my journey here and my recovery framework here).

I’ve already said in previous posts that there wasn’t the one thing that magically cured me. And while that is true, there actually has been one practical rule, that has helped me above all others during my recovery so far. That rule was completely counter-intuitive to me at first. In fact, it was one of the hardest things to learn on my journey. I have a hunch that it might be hard for some of you, too.

So here’s my rule:

Do only 50% of what your body feels capable of today.

I don’t mean 50% of what healthy you would be able to. I mean 50% of what you can do today, which is, presumably, already only a fraction of your healthy capacity. To say it a different way— I learned to steer very clear of my limits. And this applied to any kind of exertion for me - physical, cognitive, emotional. So why would I do even less than the little I was able to? As I said— it felt absolutely counter-intuitive, but I’ll try to explain.

A while back, a friend of a friend, who is also recovering from the symptoms of severe ME/CFS1, used the phrase “I’m clawing my way through each day, clinging on by my fingernails”. This really stuck with me, as her words fit my experience in the early months so perfectly. It is a very accurate description of living with severe Long Covid or ME/CFS. When my body stopped functioning, every small day-to-day thing became so physically difficult that it took extreme levels of discipline and self-control to even just take care of the basics— getting enough to eat, making a grocery list, sending a few texts. Even the simplest things were more physically challenging than anything I had ever experienced. And yet I did them, because there was no other option. You can’t magically make your body get better.

I believe that most people in my circles would approach it in exactly that way, by pushing ourselves. It is how many of us go through life. It’s based on everything we’ve learned so far, it’s what has gotten us to where we are in life— good friends/partners/parents, successful professionals, decent humans. We do our best. Pushing ourselves is also the advice we are getting from everyone, including well-meaning friends (“oh just come over for an hour then, you don’t need to stay long”) and also well-meaning, but utterly uninformed healthcare professionals (“why don’t you try going for a walk?”).

And yet, knowing what I know today about the autonomous nervous system, I know what all this pushing did for me— inadvertently, I was constantly sending messages to my body that I had to keep going, to keep trying, that it wasn’t okay to rest. And a rested state is when the body can heal. I’ll share more about this, and the nervous system, and how it all relates to recovery. But that’s a post (or five) in itself.2

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For now, I’m going to focus on what I (eventually) learned to do instead. It was a key part to my recovery, and I think that is true for many of us— particularly those of us who are used to pushing ourselves, to showing up, to making things happen.

What I had to learn, and to unlearn

I had to learn to do significantly less in every moment, in each day, in each week, than what my body felt capable of at the time.

I had to completely unlearn to push myself. That’s a lifetime, 4 decades, of unlearning. A core part of my personality. I had to learn instead to do only what I could easily do. Whenever I went anywhere near 100% of my physical capacity, I would crash later, and reverse the progress I had made. On the other hand, when I did only what felt easy, i.e., 50% of what felt possible, and stuck to that, I made a lot of progress. Consistently.

One of the most confusing things about Long Covid and ME/CFS, I’ve found, is that my gauge for my body was completely broken. And I say that as someone with a pretty decent sense for my body, comparatively— I’m a yoga teacher, I already had a decade long meditation practice when I got sick, I was pretty fit. And yet, what felt like my body’s limit, was in reality far beyond it, once I got sick. My hunch is, that this is why many of us keep crashing for no apparent reason, reversing progress, even when we’re taking it easy. We are taking it easy, but not yet easy enough.

So when I didn’t have a gauge for my body’s limits, how could I still ensure to stay within them? My “hack” was to do significantly less than I thought I could. 50%. Hard rule. That way, I learned to stay within my body’s true limit, until I eventually learned what that true limit actually was. I followed this rule consistently, from being bed-bound all the way to skiing and hiking again.

Under-doing it was a lot harder than over-doing it

So while doing less might sound fun to people who haven’t lived through an illness like this, doing much less than you want to do was actually extremely difficult. If you’re recovering, too, you’ll probably know what I mean. It’s fun to be on the couch for a couple of days, but it’s very much not fun to hold yourself back for a year or longer, every day, every hour.

Doing less than I felt able to was a constant mental juggle, and very emotionally challenging. Particularly, once I started to feel better. I had been so limited in every aspect of my life by the illness, for so long. I had been confined to lying down for months, and confined to my apartment for even longer. I had lost more than half a year of my life to Long Covid already (I know for many of you it’s been much longer, and I’m feeling for you). Once I could finally leave the house again, it required insane levels of self-restraint to continue to hold myself back. I hinted at this mental process at the end of one of my last posts.

It was also very practically challenging— I had to learn to rely on support for every little thing in my day-to-day. To let my friends take care of groceries and food, as well as of administrative things (which exhausted me cognitively), down to my mom putting the toothpaste on my toothbrush (during the most severe phase). I am very lucky to have that level of support from my mom and my close friends, and I’ll write about that another time (it was crucial). But the downside of it was that I felt only a shell of my former self, incapacitated, incapable. I found that “letting others do everything for me” state really hard to hold emotionally, to not struggle against. Stopping myself from even trying was soul crushing. It is not who I am. And yet, I knew that if I did so, if I tried (then crashed, reversing my progress), I was not going to get better. I can only describe this process as an absolute mindf***.

So how much should I do?

In talking about how much you should do, I first need to say that it’s also really important to not do nothing at all. To not stop everything. I know a lot of us are very 0 or 1, black or white, all or nothing. I get that, it was my initial instinct, too, once I had learned that any kind of activity would reverse my progress. But completely stopping to move your body brings it’s own problems. During the very severe stage, this was an almost impossible needle to thread for me - the tiniest bits of activity were already too much. I’ll write more about this, too.

So in terms of rule of thumb, or gut sense, I used a percentage. That percentage changed over time. 50% has been a good overall rule, but I tweaked it to fit where I was at. Here’s what has worked for me:

• During the most severe stage, I did maybe 10%-30% of what I felt was possible for my body without crashing. I had no good sense of my body at that point, and the downsides of overdoing it was extreme. So going very, very easy at that stage made sense.

• Once I got the hang of “recovery”, and was well on my way, and not housebound anymore, I did maybe 50% or 60%. When I felt like I could walk for an hour easily, I walked only for a half hour (but I did that consistently every day)

• Now, as I’m mostly recovered, I’m still stopping at 90% of what feels comfortable. I’m having fun, I’m exercising. But I’m not pushing myself. I’m still taking things easy, certainly not going my usual 120%.

The percentages that work for you might be different. Ignore them if that all sounds confusing. The one thing to remember is, from my personal experience - Do. Not. Push. Yourself.

Stick with what feels easy

The key for me was to stay within the range of activity that felt easy. No clawing myself through my day by my fingernails anymore. I tried to stay well away from my limits, at all times, at all cost. During the most severe phase, when even the exertion of lying still in the bathtub was too much for my body, I’d still hit those limits of course— you can’t avoid it then. But I tried to do so as little as possible. Reducing every exertion that can possibly be reduced (I’ll talk about getting out of that stage in a future post, too). Once my body had stabilized somewhat, I increased my activity, slowly, over time. But I never pushed. Learning to listen to my body became key in all this.

Ultimately, I think that this restraint is probably what “Pacing” is supposed to mean, even though for the longest time I didn’t “get” Pacing, and it wasn’t working for me. I’ll share more thoughts on that, and how I eventually made it work for me.

And lastly, here’s a photo from my very first “run” during recovery, back in February— 7 months after last needing the wheelchair. I was really excited, and really proud, that all that restraint had finally gotten me here. I only went for a little more than a mile, very slowly, and I was walking more than half of the time. About 50% of what might have done if I had been pushing myself (but I didn’t). It still felt incredible!

I’m very curious - what’s your experience with this? Does it feel similar for you, or different? Do you also have hard rules? If so, what’s your most important one?

Sending you 50% vibes,

Nicole

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Last time, I shared my framework for recovery from Long COVID. Today I’m focusing on the foundation in that framework, and specifically, how you can build it for yourself. Resources at the bottom.

Focusing on the science

A few months into being sick with COVID-19, and then Long COVID, I was slowly coming to terms with my new reality. My condition wasn’t improving. None of the medications my doctor had recommended had worked. Specialist appointments were still months out, despite trying everything, and it was unclear if they’d have anything to offer. I was now severely disabled, fully dependent on care, in my late 30s. For now, I was left with a leaflet from my doctor, on “pacing”1. It felt like a bad joke.

I searched for answers online, whenever I had a little bit of energy. I skimmed scientific papers, listened to interviews with medical experts, and read anything that I could find. I was desperately trying to figure out what was wrong with my body, and which medical interventions might help. It was exhausting—I had very little energy, and given the cognitive symptoms, could barely focus. But despite all of those research efforts, I didn’t find any answers. I did learn that the severe form of Long COVID closely resembles ME/CFS2, a chronic neuro-immunological condition. I also learned that even leading experts don’t seem to have answers yet, and might not for years. I was holding on to hope, but barely so.

I had come across recovery stories here and there. They had always felt irrelevant to me, deeply unscientific. Misleading even. My bar to believe something could help was peer-reviewed research and medical trials, not the story of a random stranger on the internet. I’ve spent part of my career in charge of statistical trials at Tech companies. In Tech, we call those trials A/B tests, and the math is essentially the same as for medical trials (randomized, controlled, blind studies). So I know extremely well that individual data points, like a few people recovering miraculously, prove absolutely nothing. I figured that those people sharing their stories had been lucky to have gotten better, and then attributed their luck to god knows what3. Besides, all the recovery stories seemed to be selling something, and hence, by definition not credible (“Recovery is possible! Just spend $ on my program/supplements/…!”). I had very little energy to spend on research, as even that was exhausting, and so I had to be extremely picky about what I read. I kept focused on the science.

Changing my mind on recovery stories

My change of mind towards recovery stories happened when I hit peak desperation. I had done enough research to know that Western medicine just didn’t have answers for Long COVID yet. I also knew that it might not for a while, judging from decades of insufficient research for post-viral illnesses. I was at a very low point. I was in bed, had barely been able to move for days, my body feeling like cement. The feeling of suffocation in my cells was almost overpowering. A cardiac monitor had been glued to my chest, in an effort to get more data. The glue had caused a skin rash, it was itching. My legs were in compression devices, to prevent thrombosis. The devices were humming intermittently, a tight grip on my lower leg that was moving upwards. Even after months, I was still stunned. How was I in this position? How was this all happening, when months ago my life was totally normal? That’s when I finally did click on a recovery story.

Reading Johanna’s story ended up being a turning point for me. Her story was relatable, and she seemed credible - not selling anything, a PhD candidate. Her symptoms were similar to mine. Much less severe, but still. Her experiences with doctors and even with her friends were the same as mine, too. And she had recovered! She had advice! I was so excited. It gave me much needed hope. I followed her advice exactly, and I must have looked at her post dozens of times over the next months. I also started diving into more recovery stories. Ironically, after ignoring them the first months, I couldn’t get enough of them now. And to my big surprise, I found many of them really helpful (I’ll share more specific ones in future posts, as I dive into specific tools).

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Looking for patterns

Now, after the first months of focusing on the science and on trying to figure out what was wrong with my body, I instead started spending all my energy on recovery stories, and how to get my body back to health again. I tried to distill what those recovered people had done to improve. I started looking for patterns across their reports. It turned out there were recurring themes. Whenever I noticed those, I tried things out, even if I couldn’t immediately explain how it would work. I paid very close attention to my body when I did. I ended up discovering a lot of practical tools that way, that had a real impact on the state of my body. (I listed many of those tools in my overview last week, and will share more detail in future posts.)

In addition to those tools, many of those recovery stories pointed me towards foundational information about the illness, which I now see as crucial to my recovery. One key resource here was the online program that Johanna recommended, ANS Rewire. I ended up doing the program, too, and found it very well researched and comprehensive. The author, Dan Neuffer, is a scientist by training and has recovered from severe ME/CFS himself. The program goes deep into the biology— the physiological, neurological, and immunological mechanisms behind ME/CFS and Long COVID, and, this is key, how I could impact them. It was well organized and easy to understand, breaking down the science. I could watch it from bed, in small increments. It helped me completely change my approach to recovery, and was a crucial piece to the puzzle for me.

A side note here: Before going through months of a debilitating mystery illness, it would have seemed insane to me to pay “some guy” on the internet for health advice. When I first encountered paid programs claiming recovery for ME/CFS, they seemed predatory. After all, ME/CFS is a debilitating, chronic, multisystem disorder, with low recovery prospects, for which Western medicine has no answers. Selling patients hope, if only they pay hundreds of dollars, seems inherently wrong. I learned a lot in the last year, however, and I now think about these programs in a much more nuanced way. I now understand why many of them exist. They do because on one hand, most doctors are very unhelpful, not having been trained in the condition in medical school (a topic for another time, but in short, there are historic reasons here, including a deep gender bias in medicine for the last century). And yet on the other hand, there actually is a lot of helpful information out there, and it’s very possible to recover (even if very difficult). Lots of people do recover. Some of those people then spend a lot of time condensing and organizing that helpful information into programs. Being on the tail end of my own recovery, and left with a deep desire to share the information I found, too, I very much understand that. I am deeply grateful to those people now.

The three types of information to look for

The types of information most helpful during my recovery were these:

• Knowledge on the mechanisms of ME/CFS, dysautonomia and related conditions, and specifically, how people can recover from these conditions

• Understanding how the body heals, in general

• Practical tools and advice

There are many ME/CFS recovery programs, of different flavors. Some are more scientific, some less - if you’re interested in doing one, I’d say do your research. 1. understand what exactly the program offers, 2. make sure it resonates with you, and it is what you need at this point in time, and 3. find credible references. If paid programs aren’t for you (I very much get that), I’ll recommend some other resources below, e.g. books, Youtube channels. Or you can follow along here. The point is - build your knowledge on the biological mechanisms of the condition, specifically the ME/CFS and dysautonomia part of Long COVID, as much as you can. To me, it was worth the time and energy, more than almost anything else I did during recovery.

I’d also recommend getting an understanding of how the body recovers in general, from any illness. This helped me gain trust that my body can fully recover, even with tissue damage and organ scarring from the initial infection, in my case. Even when at the time it certainly didn’t feel like I could fully recover, given how many parts of my body had stopped functioning. Learning about how the body repairs itself, and how we can help it do that, gave me much needed hope.

Below are some of the resources I’ve found helpful. See if anything resonates. You’ll need to find what works for you—maybe you find that below, maybe elsewhere. The key is to look for it, find it, and then start putting it into practice.

Resources

1) Knowledge on the mechanisms of ME/CFS and dysautonomia

• Online programs

  • ANS Rewire

  • Other programs: I’ve heard positive things about Gupta Program, CFS School, Dynamic Neural Retraining System, and the Re-Active Program (in German)

• Books

  • The Long Covid Solution by Dr. Carla Kuon at UCSF (University of California, San Francisco). Dr. Kuon also recovered from ME/CFS. I ended up being treated by her, months later, and she is excellent

  • Dan Neuffer’s book CFS Unraveled. I did his program so I haven’t read the book, but if you want to start with a book and you like a scientific approach, this would be my first try (pls let me know your thoughts if you do!)

  • Breaking Free by Jan Rothney. Take this one with a grain of salt - I haven’t read it in full. It seems much less comprehensive than ANS Rewire, and it felt a little condescending at times. I’m still listing it here because it’s been recommended by a lot of people, and, in my opinion, the approach and tools are helpful

• Other

  • I really like this 10-page overview of ME/CFS and Long COVID by Salome Fischer. Salome is a fellow Long COVID patient from Germany, and her write-up is intended as a primer for patients, as well as doctors. So if you need a short(ish) overview to share with your medical team, this is great.

2) Understanding how the body heals, in general

• The work of Dr. Andrew Weil at the University of Arizona. This book helped me understand how the body heals from illness, and gave me a lot of hope and some tools. Ignore the terrible title (I’m finding that extremely off-putting, personally). The book itself is actually not about “spontaneous healing”, but about creating the conditions in which the body can recover

• The work of Prof. Ellen Langer at Harvard, e.g. her book "The Mindful Body”

3) Practical tools, particularly recovery stories

My recommendation here is to find recovery stories that resonate with you, by people you can relate to, and see what you can take from their experience. And to look for tools and repeating patterns.

• The Long Covid Podcast by Jackie Baxter - one of the most comprehensive resources out there, with dozens of interviews with leading scientists from around the globe, as well as lots of recovery stories

• Suzy Bolt’s Youtube channel (Suzy has a very supportive Facebook group too, where lots of information is shared)

• Raelan Agle’s Youtube channel (same here re Facebook group)

I’d love to update my list with more resources. What information has been most helpful to you in understanding the mechanisms behind the illness? If you did a paid program, which one and what was your experience? What other resources have been helpful?

Overall, it’s pretty striking that the people behind the most helpful resources have almost all recovered from ME/CFS or Long COVID themselves. As long as there’s not enough research into these illnesses, the people who best understand them are those who went through it, and who made it to the other side. I’ve learned to listen to them.

Next week, I’ll dive into the three pillars of the framework, the practical tools. Where should I start? LMK what you’re most curious about!

All my best,

~ Nicole

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

• Gentle yoga

• Vagus nerve stimulation

• Acupuncture

• Cold water exposure

I’ll share details in the next weeks.

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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

• Diet changes

• 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

• Rest and pacing

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:

• (Re-)building hope for recovery

• 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

• Personality work

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.

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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

The onset

In early 2023, a COVID-19 infection suddenly pulled me out of my fast paced life. I had just come back home to San Francisco after a few weeks abroad, working remotely, and was looking forward to spending time at a ski cabin I had organized for a group of friends. When I came down with COVID, I first didn’t think it was a big deal. I’d always had a good immune system.

Over the first weeks after getting sick, it became clear that this was different from anything I’d experienced before. I was hardly able to get up off the couch, not able to breathe well, unable to maintain focus. A short walk to the end of the block would require complete rest for the rest of the day. Friends brought food and groceries, took care of my laundry, for weeks. I was confused. What was happening? My doctor wasn’t much help in answering. She seemed as surprised as I was, and mostly unconcerned.

After more than a month, I was finally doing a little better. I was still not able to walk more than a few blocks without needing to take breaks and then collapsing later from exhaustion, but I was better than before. I figured I could start working again – after all, I could work remotely, on a computer, which didn’t require any physical exertion or walking. And surely some normalcy and routine would help, while I waited for my body to recover? I had been bored out of my mind, locked in my apartment, unable to do much at all – I missed my friends, missed my hobbies, missed my work. I missed my busy life. I was also worried that if I was out any longer, I’d have to go on disability – certainly not something I wanted. So, I was eager to get back to work. Today I wonder–if I had stayed in bed properly and stayed off work for awhile longer, would I have recovered then? Could I have avoided what came next? But at the time, I was excited to finally go back to work and start resuming my life. My doctor was encouraging it, too.

It didn’t go well. During the next two weeks, working reduced hours, I became so physically exhausted that I had to constantly lie down, unable to manage even a light workload. A coworker pulled me aside after a meeting to tell me I had been repeating myself. I wasn’t aware, and couldn’t remember. (Much later I learned that the neurological symptoms of Long COVID can resemble stroke or dementia). One day I found myself unable to log on to my next meeting, one I’d been looking forward to. I was so physically exhausted that there was no other option left than to lie down and call in sick again. I knew at that point that I’d have to go on disability. And knowing how slow my recovery had been going for the last two months, I felt in my gut that I wasn’t going to be back for a while. I was sad that I wasn’t going to be able to say goodbye to my team, that I’d miss out on a project I was really excited about. But most of all– my hopes of finally pulling through and getting back to my life were completely crushed. I was baffled by the reality that I would need to continue to be holed up at home, by myself, bored, for even longer. It had already been two months. This is when my future started to feel very uncertain, and entirely out of my control. I was sad, frustrated, and scared, and I felt an intense feeling of loss. It was like seeing my life float away, down a river that was faster than I could run, with no way of reaching it.

On the medical side, my doctor still seemed out of her depth, still seeming to think I’d be back to work again in weeks. I pushed for diagnostics, jumped through all the required hoops of medical protocol, and finally got a CT scan. The CT showed signs of pneumonia and myocarditis. My doctor finally seemed to understand what I had been trying to tell her all along – that I was seriously sick. She prescribed more, stronger medications this time. I was hopeful that this would finally fix it. Fix me. 

Instead, my condition started declining more rapidly. Even putting food in the microwave or getting dressed were now more than my body could manage. My friend started coming into my apartment several times a day, to make sure I had food and water near me. He had to let himself in with a key – I couldn’t get up to open the door anymore. My doctor made referrals to various specialists at my urging, and was now out of ideas. The two Long COVID clinics in the Bay Area both declined seeing me, despite several referrals. I was slipping through the cracks of their stringent criteria, not having taken a PCR test or been hospitalized during the initial acute infection. They wouldn’t budge, unfazed by the severity of my condition. The other specialist appointments (regular cardiology, pulmonology, neurology) were months out, despite my doctor’s insistence that it was urgent. Months more in this state, barely able to move, before even seeing a doctor who might be able to diagnose me? I was increasingly desperate. At this point my mother came over from Germany to provide me round the clock care.

The darkest period

During the worst months, I spent 23 hours a day lying down, barely able to walk the few steps from my bed to the bathroom, some of the time in a daze. In addition to the debilitating fatigue, I had cognitive issues, memory loss, nausea, dizziness, body pains, racing pulse, palpitations, tremors, numbness, digestion issues, sensitivity to sound, light and touch, and a range of other symptoms I had never experienced, impacting every major system in my body. Nothing was working. My limbs felt like I was wearing a lead suit, like moving through cement. Like there was cement in my brain, too. I had a hard time thinking or focusing on anything. In the mornings, I often had a sensation I can only describe as my body being poisoned or suffocating. Like my cells were not getting oxygen (I now know that they did get oxygen, but that the next step, cell energy production, can be severely impacted in Long COVID - so oxygen wasn’t being converted to energy that the cells need to function. My sensation of suffocating wasn’t far off). It felt awful, and not remotely like anything I had ever experienced before. The symptoms increased whenever I’d be upright (known as “orthostatic intolerance”). My pulse would be at 130 just sitting, or doing as little as lifting my hand to brush my teeth–up from 50s resting. I’d feel awful. I had a shower seat for seniors so I could sit down in the shower, but eventually even that became too exhausting. One by one, I lost the capacity to every little day to day thing. Some days, I could barely sit up in bed for long enough to eat. Any time I exerted myself too much, which was minuscule levels, my condition would worsen significantly, for days or longer. This would happen seemingly randomly, not immediately, but a day or two removed, so it was hard to know what exactly was too much. Was it sitting up for too long this morning? Brushing my teeth? Making a necessary phone call to the insurance company yesterday? Taking a bath a few days ago? Was it the new medication yesterday? It was extremely confusing. If my phone or a glass of water was in the other room, I couldn’t just get up and get it - if I pushed through the fatigue, I had learnt by experience over and over, it would trigger a new shift downwards. I mostly needed to be in a quiet room. At times my nervous system couldn’t even tolerate my mom touching my hand. I felt disconnected from the world, trapped by my own body.

In my search for answers, I had quickly come across the low recovery rates for Post Acute COVID Syndrome, even after years. I had learned that experts didn’t yet have effective treatments. That research results might be years out. Learned of the close resemblance to ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), a severe and chronic neuroimmunological condition, for which there was no known cure. I can’t begin to describe how that all felt emotionally. My sense of loss was all encompassing – I had lost not just my health, but my entire life. My independence, my hobbies, my social world, my ability to see family and friends, my career. It was unimaginable, and yet it was the new reality I was living in. Meanwhile, most friends didn’t seem to grasp the severity of what I was going through. I had stopped hearing from most of them after mentioning that I was still sick after the first weeks – only a few seemed to want to hear about it. Some seemed confused or maybe even a bit offended that I couldn’t meet up, others seemed unsure what to say and deeply uncomfortable. Some even made jokes about my situation– surely well intended, but extremely hard to hear. Some of my requests for help went unanswered, or took months to get a response. What was happening to me–that I had lost my life as I knew it, that I was months into an extremely unclear future–seemed to get lost in the busy-ness of everyone’s lives. I had always been an extremely independent person – I lived in 5 different countries in my 20s, I learned several languages, I made a career in Silicon Valley for myself after moving to the US at age 30. I loved to dance until sunrise. Now, in my late 30s, I needed my mother’s help bathing, and was continuing to decline. I was only able to leave the house for doctor’s appointments, and then needed to be brought in a wheelchair, lying down in the car because I couldn’t sit, with several days of complete rest before and after.

The doctors were shrugging their shoulders. Despite this being 2023 and years into the pandemic, they didn’t seem to have a protocol for post-COVID at all. My symptoms and their severity were apparently unexplainable to them. One doctor even told me it wasn’t a big deal and actually said, “don’t worry about it.” (At that point, I already required round the clock care, had been brought into her practice in a wheelchair, and I had lost my life as I knew it. I’m still enraged when I think of this doctor’s incompetence and tactlessness). The better doctors took me seriously, and were aware that COVID could cause this, even in young and healthy people–but they didn’t have a treatment either. I was diagnosed with Post COVID condition, and later with its most severe form, ME/CFS, as well as POTS, a severe chronic cardiac and nervous system condition (postural orthostatic tachycardia syndrome)–both with no known cure. Diagnoses of cardiomyopathy, myocarditis, and pneumonia came somewhere along the way. The doctors had no next steps.

Whenever I did have a little bit of energy, I’d spend it searching for answers. What was this vicious illness? What was wrong with my body? Who could help me? Was I going to get better?

A turning point

Fast forward a few months to July 4, of all dates (Independence Day in the US, for those of you elsewhere). I managed to take the stairs down to my backyard for the first time in months, all twenty steps. I was using a cane and my mom’s help, but I did it. I love the backyard of my apartment building: it’s lush with palms, big succulents, and a lemon tree. I took a seat in the yard for a little bit, feeling the evening air on my face. The bamboo was rustling in the wind, and it was uncharacteristically warm. Being down in the yard, for me, was huge. I was exhausted, but I couldn’t get the grin off my face.

I know it’s a little cheesy but this really was the first day I was able to take the stairs again, so the July 4th holiday will always be tied to this “personal Independence Day” for me. Watching the neighborhood fireworks outside—I don’t think I’ve ever been happier than at that moment, enjoying that huge accomplishment with my mom. That I could even be outside, that my body tolerated the commotion. Getting my life back was starting to feel possible again. Over the previous month, I had been slowly, carefully, and deliberately expanding my body’s tolerance to movement, starting with just a few seconds a day, then resting for a day or two. I’ll share more on how I went about that in one of the next posts. When I made it to the backyard after a month of “training”, I knew in my gut that this approach was working. That this accomplishment was going to be a turning point. Back to the backyard, back to my life!

Now

It was about a 5 month span of time where I went from bedridden (0% functionality on this scale) to some semblance of normal functioning (about 60-70% functionality). I still needed lots of rest and was well below regular capacity, and still experiencing moderate symptoms. But after 5 months, I was able to travel back to Germany without help, walking myself through two major airports, not needing the wheelchair that was ready for me just in case.

Now, 10 months after my July 4 turning point, I am doing much, much better. I’ve largely had my life back for a few months now. Am I “fully recovered”? Recovery is weird, and not linear. I feel recovered most of the time, and my body feels normal again, but I still have very mild symptoms here and there. I still take it easy, currently living a slower life than my fast paced one pre-illness, to avoid relapsing. That puts me somewhere around 80 to 90% on the scale (as of May 2024). The important thing is, I feel well. I’m living my life, and I’m able to do a lot of physical activities again already. In 2024 so far I’ve gone hiking, camping, and even skiing. I’ve learnt to be closely in tune with my body and to stop before I reach its limits. In certain ways I could say I’m feeling better / healthier / fitter than before I got sick (I’ll share more on that) – as I said, recovery is weird! But the main thing is, I have my life back. Given where I started, and how far I’ve come, I know in my gut that getting to 100% is a question of time, and at this point I’m not in a rush anymore (I’ve learned that rushing doesn’t help) [update 2025: I’m fully recovered]. I continue practicing the tools that got me here, every day.

It’s been a long and extremely difficult journey, and yet I know that I’m lucky. That, given where I was, it was an unusually quick recovery. That’s a big part of why I want to share everything that has helped me.

What you can expect: a repository of tools and learnings

This newsletter is going to be a repository of everything I’ve learned and of the resources that were helpful for my recovery. Early on, I was desperate for advice and would have been relieved to find even one person who had recovered from my level of severity. For a long time, the only person I knew who’d recovered wasn’t fully back to normal, and she had had a relatively mild version compared to me. This is why I want to put my story out there. I went through some really hopeless moments, but eventually I got back to health. More than anything, I wish I had known earlier just how much there was I could do myself to help my body heal.

Finding the information I needed was a very long and lonely road, using every ounce of spare energy I had, and cobbling together every bit I could—from podcasts, blog posts, YouTube, books, alternative health practitioners, research papers, patient organizations, paid programs, and (eventually) a couple of rare knowledgeable doctors. I’ll share all that information, and consolidate it. I’m creating this newsletter in the hopes that it can be a good resource, and that others might have an easier time finding what helps them.

I’m planning to post every week or two for the next few months, and I’ll group all the different learnings into categories so that the information is easier to navigate. I’m also planning to share a lot of detail on how I’ve been using tools like breathwork, anti-inflammatory diet, and supplements, along with links to good resources and research where I have them. I’m also going to explain how I slowly expanded my body’s capacity, as mentioned above (it’s called baseline training), which was key.

Just to be clear, I did not find a “cure.” I did not find one silver bullet that healed all my symptoms. And my process was just trial and error, with many tiny steps. I’m eager to share here the major themes and learnings from my personal road to recovery. I’ll start next week with an overview - my mental “recovery framework” (update: here’s the overview and framework).

How you can support me

I’ll be honest, putting something this personal on the internet is not exactly easy. I was never much of a share-er online, and this entire journey, going through severe illness, disability and many traumatic experiences, has felt intensely vulnerable. Long COVID, ME/CFS and POTS are extremely varied and complex illnesses, so what works for one person doesn’t work for everyone (despite how enthusiastic I might be about it). Moreover, I’m also thinking of people who have been suffering from these conditions for years or even decades without improvement, and have already tried everything in their power. I can only imagine that there’s nothing more frustrating than someone like me, with my considerable privilege, saying “look I did it, it took only a few months, and you can do it too”. I understand how that would feel, and I don’t want to be that person. I’ve gotten lots of BS advice from people with no clue about my condition myself. And yet–if it can help even one person get their life back, I have to share my story. So I am hoping for your generosity in reading this—bearing with me when I’m rambling, and kindly disregarding the pieces that aren’t for you. You can support me by sharing your feedback and questions with me, by subscribing, and by sharing this with anyone else who you think might find it useful. Thank you!

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Some hope and more fireworks!

Just six months after watching the July 4 fireworks from my backyard in San Francisco, I was able to see them again, this time from a rooftop in Berlin while celebrating New Year’s Eve with old friends. Watching this set of fireworks was every bit as magical. I was again overwhelmed by gratitude, this time for finally being well enough to travel home back to Germany, and to be with my friends there. I was looking back on how far I’d come and looking forward to a new year. I could not have been more excited.

I’m curious to hear from you. What brought you here? Where are you on your journey? What would you most like to hear about?

All my best,

~ Nicole

Thank you

I’ve been getting lots of help, advice, and support from friends old and new these last months – thank you to everyone who has supported me in this scary/exciting endeavor!

Particular thanks to my friend Melissa, who generously edited this, and gave me much needed advice. We met exactly when we needed to meet (a few months ago, as I just started wrapping my mind around writing this), and exactly where we needed to meet (sitting in a hot spring overlooking the Pacific Ocean, which happens to be my favorite spot on earth). I am grateful. The universe always provides, if we let it.