The one simple rule of my Long Covid recovery

As a life-long ambitious and highly motivated person, I had to build up an extreme level of self-restraint to recover. This was one of the toughest mental challenges in my yearlong journey.

I’m not a doctor, nor a scientist, and the following is not intended as medical advice. I’m just one person who has mostly recovered from a severe version of Long Covid, sharing my experience and learnings. Please always listen to your body, and always ask your medical providers what’s right for you.

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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).

This is part of the “body” pillar in my recovery framework

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

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!

First “run”, February 2024

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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1. Myalgic encephalomyelitis/chronic fatigue syndrome, a severely debilitating neuroinflammatory, neuroimmune illness most commonly triggered by virus infections. It’s the most severe version of Long Covid

2. You can refer to the resources in my last post for now, too