My recovery from ME/CFS - part four: bends in the road

If you clicked on this after Sunday, September 28, there’s about a 75 % chance you got here because of my YouTube video. If you’re struggling with English, your browser likely has an in-built translate function somewhere. And in case you haven’t done so, you should read the previous parts of the series first: prologue, part one, part two, part three.

I thought about this next part for many weeks. I feel like now is the time where we leave chronology behind. It doesn’t make sense to guide you through every bend in the road I experienced during the now six months of my recovery up to this point - not that I would even remember all of them anyway. Instead, I now want to focus on some of the things that I learned, acting as tent poles during this crazy storm. As always, these things were true for me, they don’t have to necessarily be true for you - although I have a hunch that many others can relate. This post will be somewhat darker than usual (not exclusively dark though), but just as important.

Let’s start off by acknowledging that either way you go about ‘recovery’ (more on this idea further down), it is probably the hardest thing you’ve ever done. So naturally, you will become extremely fed up and desperate with it at some point. I certainly did. Many, many times. I think especially when you’ve been through shit time and again, health-wise and mentally, and each challenge seemed to be harder than the one before, you ultimately ask yourself: Where is this going to go? And am I maybe, just maybe fucking my life up on purpose? I mean - and I was never inclined to think like that before - no one deserves the level of suffering you go through on a daily basis with an illness like ME/CFS. No one. And just for the record, guilt-tripping doesn’t help either.

This is fear. It’s the fear of having seen darkness and knowing it can come back. It’s the fear of reaching a point in time where you will no longer be able to bear darkness. I think it’s one of the most central issues in any life-altering event or process, and I have returned to it many times, which is why I’m addressing it here. No sugarcoating - there are moments where you simply do not want to exist, and you do wonder if there will come a time when you will try to facilitate that non-existence yourself. Suicide among ME/CFS patients is well-documented.

The human body and brain have an astounding capacity for handling daily pain. It’s the mind (and, if you believe in that, the soul) where the long-term effects show up much sooner. For me, a couple of things have happened around that issue over time and I’m not yet ready to share all of them here - some will take a lot of explaining anyways. But here’s part of what helped me not succumb.

First of all, I think many of us have very little social context for darkness because society practically doesn’t address it. A lot of us, in the context of trauma or other experiences, ultimately know what it’s like to feel logic, physics, personalities and reality itself bend and dissolve in front of your eyes because either you are in too much pain for these things to still make sense or you have been exposed to events that are so horrible that there is no way to connect them to the world you know. I’ve seen both. But until trauma therapy, I had absolutely no one to relate to over these experiences. With the following effects:

Any experience of ‘falling out of the world’, as I put it in my younger years, was incredibly isolating. Because I couldn’t talk to anyone about it, it also had no language. Which made it even more frightening. And because it didn’t seem normal and it came with all this intense discomfort, I did everything in my power to stay away from it, fearing it might lead to … well, who was to say?

In any case, staying away didn’t work. ME/CFS has a lot of darkness-inducing elements. Your perception is altered or dampened, your physical abilities reduced in this weird, inexplicable way, you often experience the dread of not being able to escape your own body with all these intense symptoms. And you’re being told by medical professionals that this is now your life.

In some sense, that’s true - living with the illness, even if you then recover, is your life for a long time. So in order to not dissociate all the time, I had to find a way to integrate darkness into reality. Ordo a chao. I researched, talked to my therapist and found some answers for myself. For instance, darkness is normal. It’s a normal response to circumstances that don’t match anything you’ve previously seen. For me, the first conscious memory of this acid-like feeling in my whole body was when I witnessed a roused cow violently attack a drunk civilian in an arena, to the (apparent) bloodlusty pleasure of the onlookers. I remember how limp the man’s body looked as the cow was thrashing it against the ground. He was carried away on a stretcher and I don’t know what happened to him. I was still a kid and the experience horrified me intensely. None of it seemed to make sense in the world that I had thought I was living in.

So, darkness as a response is normal. And in order to establish this normalcy to your nervous system, you have to talk about it. During my recovery with ME/CFS, I kept a ‘burn after reading’ journal, meaning it was a place where I was brutally honest in sharing the feelings I had in that very moment, even if I deemed them ‘irrational’. Experiences of reality-bending darkness, induced by long stretches of brain burn (as I still like to call it) or ongoing fatigue, were a common topic. I was allowed to express how upset I was about that. I didn’t have to put on a rational, brave face. And if I didn’t want to exist in that moment, I also said that. It was liberating and it brought all these things into the light and out of shame.

Again, this is only my own reasoning here, but I realized that making it okay to feel like I didn’t want to exist sometimes, because of what I was going through, was already taking away a lot from that wish. I mean, it’s not that I wanted to be dead, I just didn’t know how to handle that kind of life. And part of the answer for me was to make nothing off-limits. There can be no taboos in an existential situation like this one.

The other thing, and that’s maybe even more difficult to explain, is that I’ve found that even darkness is less dark when you are able to understand it better. I have had the same experience with fear, which is an emotion I tried to avoid rigorously for a long time, thanks to my panic attacks. It was only during the last few months that I started to integrate and see it as a normal emotion that, slowly, over time, you can sit with and learn about.

The same applied to darkness. Up until recently, I was convinced that in order to stay ‘sane’, I couldn’t sit with darkness too much (classic fear response). Which obviously resulted in me always being on the lookout for darkness and making sure it stayed away. Which is called hypervigilance and exactly the type of thing we don’t want when our nervous system is dysregulated. Instead, I now slowly start to lean into it for a while. In order for it to not consume me, I had to start looking at it with curiosity. I know this can be confusing for anyone who’s not familiar with therapeutic concepts but this has been backed up by my own therapist and many more and it was an incredible relief to know that there is a process for this - other than trying to ignore something like this for forever.

This is a difficult topic because this type of work, in my mind, requires professional help. At the same time, not bringing it up here and sharing how I dealt with it would be a disservice because it was and is a crucial part of my recovery - and not everyone always gets the professional help they need, for various reasons. So stating here that even something like profound inner darkness can be dealt with is important. And simply saying ‘if you feel depressed, go see your therapist about it’ creates an exclusiveness around this information that certainly didn’t serve me when I was in that situation.

Another thing that ties into this that I have to mention at this point is recovery as a concept itself. You can’t imagine the relief when you hear someone else’s story for the first time and the idea of getting out of that illness becomes a possibility all of a sudden - only to then be backed up by hundreds more of these stories. I don’t know if I would have done any of this hard work if I hadn’t seen it take effect in others. You lose your trust many times over.

But. As exciting as it is to see people speak of themselves as ‘100 % recovered’ (and I have no reason to doubt their stories), it will eventually create a certain pressure to get there yourself. No matter how much you try to avoid it, you create a timeline in your head. In my case, after listening to about twenty different recovery interviews, my vague hope was that I was going to be able to recover within maybe four months. Which, on the one hand, was amazing because that felt like a manageable timeframe. If my estimate would have been years, I don’t know what I would have done. However, I realized after about three months of recovery I was starting to get stressed out because, although I had made it far, I wasn’t ‘there’.

I then adapted my timeline, riding that fine line between motivation and pressure, to allow for the fact that due to my previous health complications and ongoing trauma work, some parts would probably need more time and that was okay. Still, and I only realized this recently, I was walking around with this idea that anything other than a full recovery couldn’t be my goal, and as (mostly) convinced as I was that this was going to work, it also still created a lot of pressure. Not only because sharing this story publicly meant that some people would expect me to fully recover in order for my words to have any value. (Which is bullocks - look where I am now versus where I was; even partial recovery is an immense victory.) It was also because what drove me to this idea of full recovery was that I never wanted to deal with any of the symptoms of this illness ever again.

Understandable, right? Which is why we often don’t question the pressure we put ourselves under in these situations. Of course you want to get better! But it still doesn’t help, because any time something goes ‘wrong’ in recovery for a bit more than a few days, I would start to get ever so slightly frustrated, trying to come up with explanations. The best way to deal with symptoms, in my mind, is to let them be as much as possible. That’s difficult to do when you’re waiting for them to go away.

I now understand recovery as a process, not a goal. And it teaches me a lot more about how to deal with life whenever I don’t look at the seemingly bright and perfect future where I will not be in any pain, ever, for the rest of my life (sure, bro). There’s an incredible humbleness in this approach that seems self-sacrifical and masochistic or downright crazy to some, and I understand that. But so far, this is the best way I’ve found to deal with a situation in which your consciousness has no control - except for how much fear you add into it as fuel - and there is no indication of a linear timeline.

In short, six months into my recovery, it doesn’t serve me to keep my eyes fixated on the horizon. I take the daunting and often still overwhelming invitation to stay in the present, with all the discomfort that will often present itself, and accept what each day can teach me. There is so much I never even knew. Obviously, my wish is to be in as little pain as possible in my life, and I’ve come very far already. But I’ve learned that I can’t facilitate it by pushing against pain, fearing pain or ignoring it. So instead, I sit with it, just like I now sit with joy when it comes (and it does). This, I think, is the way.

In the glasshouse

Last weekend, I was eating out with my larger family, some of which I only see every few months. As we were sitting outside, surrounded by trees and the light of the setting sun, I was discussing social media with one of my family members. She and I are known for having loving, heated discussions about dividing topics, and this is surely one of them. She said, ‘I think it’s important to never share yourself, who you are, on social media.’ She’s well aware of what I do for a living and it wasn’t intended (nor received) as a slight against me. She simply expressed what I guess a lot of people feel around social media the last few years - it’s, in many ways, a place of great vulnerability.

What she was referring to, specifically, was the fact that a few months ago, famous German writer Cornelia Funke left Instagram and Facebook for the decentralised Pixelfed platform, claiming discomfort with the general atmosphere. Quite frankly, I can’t blame her.

I’ve been publicly present on social media for about ten years now and have made a living off of YouTube and, in a very, very small amount for a time on Instagram and Twitch, since 2016. Before that, I had small blogs and websites, and before that I self-published my novels when I was still in school. When I was a kid and the Harry Potter saga became a global phenomenon, I took the then child actors’ advice to ‘prepare’ for a public life because I already knew back then that I wanted to do something that, if it worked, would likely come with some form of public attention.

Let’s not turn this into a kitchen-psychology piece about covert (or open) narcissism - in fact, neither does being a public figure predict your level of narcissism, nor does the lack of public aspirations rule out the diagnosis, and heck, actual clinical narcissism isn’t as common as you might think. In fact, as I’ve found personally, there’s a bigger link between being misunderstood when you are young, for instance due to neurodivergence, and then later putting yourself out there to get recognition beyond your peers. But anyway. Not the point of this article.

In terms of social media, you could say I’ve been around. Aside from TikTok and Snapchat, both of which I wisely stayed clear of, I’ve tried most common platforms over the last decade and especially on YouTube and now here on the blog, I’ve shared very personal facts and stories to a pretty large audience. How does that feel?

Well. It’s ambivalent, to say the least. Vulnerable - for sure.

Cornelia Funke’s first post on Pixelfed says ‘I … left Instagram and Facebook because they have become a forum for hate speech that wants to poison the world with pictures and ideas, sowing seeds of doubt, darkness, intolerance and distress.’ While this is surely alluding to the bigger picture on the platform, she is certainly also saying this from personal experience on her own profile.

When discussing my job with people who are unfamiliar with how social media ‘careers’ actually work, there is one thing they almost certainly do know. ‘What about hate comments?’, they will ask.

The comment section on Instagram, YouTube, Facebook and beyond is sometimes louder in terms of setting the tone than the actual post itself, which is why it’s so dreaded by creators. I know that some of my colleagues refuse to look at comments at all or have others moderate them. I also know that even if you receive ten grateful praises by viewers and only one nasty insult, you will remember the insult more. Basic biology.

The tale is as old as web 2.0 - where there’s anonymity, there’s social indecency. I’m not sure I still believe that fully, however. On a recent visit to the flea markt, a man publicly announced to a vendor that he sort of hopes Hitler comes back to ‘do a little cleaning’, casually, as if he was talking about the weather. So no, it’s not just about anonymity online. There is a huge difference between what people say and what people would actually do, and this applies to anything mean that is said online as well. But I’ve also come to see the comment section - whether it’s actually gotten worse in the last few years or not - as society’s thermostat. And anyone who’s posting online, as innocuous as their posts might be, will be forced to read the scale.

There are other people better equipped to explain how social media algorithms and intentional action behind the scenes at the big corporations contribute to the rising temperatures, and there are obviously also other factors at play that have a little less to do with social media itself and a little more with general economic fuckups of the last decades. This goes beyond what I can discuss in this article. My point is: Wherever society’s at (and right now, we’re pretty divided and angry), if you’re publicly sharing things online, you will regularly be the projector screen for people’s frustrations.

I have been scolded, ridiculed and virtually shouted at for owning a dishwasher (yep) or ‘propagating the green oppression’ because I live in a tiny house (I didn’t even vote that year), people have hoped I would die from the covid vaccine (didn’t even promote getting the shot, in fact, I said absolutely nothing about it) and otherwise projected their ideas of how other people should be onto what they saw of me - weight, habits, nutrition, career, you name it, they judged it.

Most of the time I simply delete the comment right away - angry answers aren’t the solution, trust me on this. But more generally, what happens of course is that after a while, you can accurately predict the outrage of at least one person about something you’re about to post. And that’s not something you want to think about when working creatively. It’s also not what I want to put in viewer’s heads when they scroll through the comments. What people say about the content gives a certain flavor to it, and I don’t want that flavor to be controlled by a desperate minority - which is why, to this day, I go through all comments (not all sub-comments, that’s impossible) and delete what I feel is inappropriate. I think you can figure out now why this blog doesn’t have a comment section - I want the texts to stand by themselves. Feedback is appreciated, obviously, and I receive e-mails and comments elsewhere about it, but here, I like things a little more quiet.

Another form of vulnerability is something viewers don’t often see. Involuntarily being a public projector screen also means that in order to get control over something they lack control over in their own lives, some individuals will try and deliberately hurt you and see the effects play out publicly.

In 2019, if I remember correctly, I was still streaming on YouTube gaming regularly. One night, my livestream was raided by a troll channel, meaning dozens of users posting bawdy insults were streaming into the chat. My moderators did their best to instantly delete what was being said, but it was a lot. I stayed calm throughout, having dealt with trolls on many occasions before. Next thing I knew, they were posting my former private address into the chat and started ordering food to said address. By the time the stream ended, I had three orders, all of which were obviously to be paid on delivery. And to top it all off, they went to my ex’s house because that’s the address they had looked up. I had to call all three restaurants, two of which had already sent out the delivery, and call my ex late at night to explain the situation. That was … a lot.

This happened again two weeks or so later, leading to a police investigation that went nowhere (they could have requested IP addresses but they didn’t have enough staff I’m assuming), even though the chat messages contained death threats and other chargeable crimes. So yes, you are vulnerable out there.

A few years ago as well, an account on a chat website was circling around, impersonating me by using screenshots from my videos, zoomed in on my buttocks. Many, many fellow filmmakers and other creatives are dealing with fake profiles, asking viewers to donate money or sending explicit pictures. It’s an uphill battle and you quite frankly don’t even have the time to go after them all. It sometimes feels like you become one of those discounted filthy DVDs they throw at you at tech store check outs - instead of your content being watched tastefully in cinemas, you’re handed down to greasy, sad individuals who yell at the screen and make fun of you.

Being on the internet for that long as myself, not as a company (which can face witch hunts as well), I have always had a set of rules that helped me protect at least some of what’s left of modern man’s privacy:

• I never shared my former partner’s face or much of our interaction, even in videos when we were on the project together, like with my RV renovation. I have witnessed the devastating consequences of viewers turning on one of the two when a public couple breaks up. Lee MacMillan, former partner of Max Bidstrup, committed suicide in 2022 and her family cited the social media bullying after the breakup as the leading cause. I knew them a little from online, so this one hit me big.

• I don’t disclose my location, let alone in real time. I am strongly opposed to the law that forces solo freelancers to give up their private address online as a legal imprint requirement (for the lack of a company address, which is expensive - and illegal if you don’t really have a company there). Stalking is real. And yes, I do get weird e-mails and unsolicited letters. (And yes, only from men.) I’d rather not.

• I stay clear of any topic that I still have too much vulnerability with - meaning anything where people’s mean comments could actually hurt me or cause unnecessary doubt. That being said, you can’t predict what people are going to say so it’s never really a safe bet. It’s obviously a mindset thing, too - how much are you even willing to give people analytical autonomy over your life? This goes back to beliefs about your own self-worth and identity, which I think is what anyone ‘out there’ on social media should work on to protect themselves. That being said, some arrows will always pierce the armor (if not, you’re callous, which is not what you want). I wish we lived in a world where this didn’t come with the job, but it does. (And no, I’m obviously not talking about justified criticism. Not everything is hate speech.)

Being open and personal on social media is like sitting in a glass house. Even if you’re making sure that one side has curtains, it is a lot of exposure. So is it really worth it?

First off, I’m stubborn. Just because the conditions are adverse, I don’t see why I should be forced to give up something I love. Which is not the public attention per se - in fact, it’s rather awkward to think that tens of thousands of people are watching what I put out there. It’s creating something for other people to resonate with. In other words, it’s doing what other people, unknowingly, have done for me all my life when I felt misunderstood and have turned to art and literature and movies and music to find solace in shared experiences and sentiments. That’s just what I do. That’s the world I belong in.

And secondly, despite the craziness of living part of my life online, I know that it’s working. I have received many beautiful e-mails and comments from you, especially over the last few months, thanking me for what I do and sharing how you connected to the little films and texts I post. So it’s not in vain to give up so much control over parts of yourself so people are now able to dissect it to their liking. It’s not in vain to try and ignore the pressure to ‘stay relevant’ and instead just wanting to be yourself. It’s not in vain to know that many people out there don’t consider what I do to be a ‘job’.

All that being said, we can’t ignore the fact that a lot of the vulnerability online exists simply because the corporations who provide the platform don’t do enough to protect users. They are pretty damn good at collecting data up to our sleep cycles and political preferences, but utterly careless about basic things like support access for creators (I’m looking at you, Instagram).

It’s also a weird time in general on social media. Because production is so professional nowadays (watch videos from fifteen years ago and be humored) and we’ve seen so many scandals, a lot of viewers automatically assume that everything is scripted and fake, making it almost a sport to pick on creators to show how cleverly they ‘uncovered’ their ‘scheme’. For a vast area of social media, unfortunately, that is true - because attention as the sole currency doesn’t incentivize everyone to be authentic and truthful. But the rest of us get to bear that load as well, and people often forget that this is my actual life I’m putting out there, not something a content agency came up with. Sure, it’s my choice to do that. But that doesn’t mean it’s other people’s job to look for conspiracies behind my illness (‘How convenient - just when you needed the money, I guess’) or assume I was paid by the green party to promote tiny houses (still no).

So, in short (haha), I don’t agree with the idea that you shouldn’t put yourself out there as yourself. I do think that not everyone should do it, because it’s a lot to bear. And I think you certainly shouldn’t do it simply because it smells like quick bucks. But if no one is authentically vulnerable anymore for fear of retaliation, unfounded criticism, stalking or other harassment, where does that leave us? Especially because a lot of stuff is so fake today, we long for these little islands of sincerity in between. And I don’t see how society benefits from them being taken away. Sure, you can reasonably argue that social media in general, as it is today, is kind of a bad idea. But while it exists, I’d rather it has realness in it to remind people that not everyone is a hypocrite and we are ultimately all part of the same thing - the human condition.

Returning home.

It’s Friday night and I’m sitting in my former childhood bedroom, which now serves as a crude mixture of sports room, guest room and my current workstation ever since I moved back in with my parents in February. Since none of us knew how long that would be (initially it was supposed to be ‘a couple of days’), we never really transformed the space so I’m still sitting in an old chair with odd cushions on it (my back can’t handle most chairs) and I’m using a TV as a screen. Cables are everywhere. Somehow I managed to adapt to the chaos - something I usually despise.

Street sounds are coming in and if I turn slightly to the left, I’m overlooking the nook of the property where my tiny house sits. The transformation over the last few months is hard to miss. Fresh paint everywhere, plants are in good shape and the corner trim is completely redone. I’ve been quite active recently. (More recovery-dedicated posts are coming.) It started out with the necessity of repainting the exterior of the house; something I’ve needed to do every couple of years so far. There’s a lot of sun exposure on the house and for reasons of weight, some of the wood used is rather flimsy.

As I was preparing for this big job, I realized that in order to do this properly, more needed to be done. The window trim, parts of the windows themselves, the railing, … I was hesitant at first - since I moved out of the house in late 2023, I had been unsure of what to do with it. I still paid for heating, until we emptied all the pipes so we could let it freeze. The tiny house served as an art studio for a while but I eventually moved my art supplies to my apartment as well so it mostly sat empty, which was stressing me out. After all, I cared about this little place I built. I just didn’t know how to put it to good use now. When I visited the empty room, it often made me sad.

So this year when I looked at the work ahead, I was still unsure if the countless hours would be worth it. I knew I was looking at several weeks of sanding, painting and more to do it properly - the paint I had used previously isn’t available anymore so I had to switch brands, which also meant painting everything twice. I was still in the middle of my recovery, which meant that energy was sparse and there was a lot of ladder-climbing and power-tool-using in the sun to be expected.

And yet. Something itched me to do it right this time. Before I had moved out, actually already by the time I had moved onto the parking spot back here, I knew it wasn’t going to be ‘forever’ anymore, since I planned to find a place for me and my husband. Which meant that a lot of the work around the house felt like chores that weren’t really getting me anywhere because my mind was already set on the next thing. Some of the final jobs I had done on the house tell of that story - haphazardly built furniture pieces, bad paint jobs on the exterior where raw wood started to show.

I have since been cured of the impatience of wanting to move on, at least for now. My illness has played a massive part in this. I can now live in the here and now in a way I couldn’t before - and obviously not just because the original plan to move in with my husband has been wiped off the board because we’re no longer together. In fact, one of the biggest wishes for this year was to arrive. To really be where I am, and not putting my foot into the next apartment, job, life goal already.

As I started washing, sanding and painting the cladding, which indeed took many weeks and many days of rest and pain in between, I had time to think about all that. As hard as the job was - early summer had the hottest days, so I would sometimes try to beat the heat by starting before eight, but even then I ended up in 36 degrees eventually - I once again realized how grounding it was to work like this. How good it felt to be taking care of something I had built. And not just anything - my own home.

Over the course of several weeks, I slowly started seeing the potential. When I had moved out, there had been quite a few things with the house I wasn’t happy about anymore but was unwilling to fix at that stage. The heating, for one, because it was becoming unreliable and very expensive (propane gas). My oven was broken. The faucet in the bathroom turned itself on all the time. It was hot as hell in summer sometimes. None of these things were impossible to change, but eventually I just hadn’t had the energy to tend to them anymore.

Ironically, while still recovering from an illness that had quite literally taken any remaining energy out of me for months, I started to find the conviction to do something about those things and give my tiny house another chance. I had initially moved away with the intention of starting a new life in a ‘new’ town where my parents weren’t the only people I knew who lived there. But my apartment, as gorgeous as it was and as promising as some of the events of early 2024 had been, ended up isolating me even further - because now, and especially when I got sick about seven to eight months into me living there, I didn’t even have my parents around.

I have since learned a lot about my actual social needs that I’ll maybe share another time, as it’s quite fascinating for someone who only recently realized they’re neurodivergent, but in any case, this summer I started to see my house with different eyes again. As a sanctuary, in close connection with my family, that no other place could provide. It’s a big responsibility to take care of a house, yes, but at the same time, the responsibility felt much bigger when I didn’t live there, because I wasn’t around as much and eventually only came to take care of the chores without being able to enjoy what it had to offer.

Eventually I decided to get a new heating system, which is going to be installed later this year, and fully renovate the space to accommodate for my needs better. It’s interesting what the house could tell me about my past self. For instance, I never had living room seating that was truly comfortable, even though my back, like I said, tends to hurt after a while. I was stubbornly trying to make do with what I had, and in my initial plans from 2017, there wasn’t even a full living room in my design. I was kind of expecting myself to spend all my time at my desk. Yeah.

The more time passed, the more the renovation got intertwined with my recovery. The progress I made on the house matched the progress I made with my stamina and with how my nervous system reacted to new stimuli and heavier work. I never put myself under pressure to finish anything at a given time, instead I found that most days, whenever I was fit enough, I wanted to go out and continue.

A few weeks ago, still going back to my apartment once a week to water the plants, I finally made the decision to give up this other space and fully move back into my tiny house. It’s daunting still - I can’t really know how I’ll like it after all this time. But I’m also excited. It’s like this project never made it to the true finish line and never received the final trophy or reward it deserved. The entire time I had been living there I was going back and forth between there and my husband’s place. In fact, as I recently realized, I have almost never lived in just one place in my adult life. It feels incredibly relieving to do that now.

In terms of YouTube, returning to my tiny house is a bit like returning to my roots, obviously. Building this house and documenting the journey was what turned my channels from a side hustle to a full-time career, and no matter what happens, I’ll always be grateful for that. Over the years, I kind of thought I had gotten as much out of the tiny house as there was to get, in terms of videography. At some point, I struggled to find new angles to film from or ‘make it interesting’. However, when I picked up the camera this year to do exactly this - document the journey -, it seemed easy. Resting has served me well, and now that I’m starting to live again, I’m also ready to share the first bit of my new tiny house journey with you. My English-speaking channel has been dormant for two years now but this Sunday at 11 am CEST, the first episode of a new series is going to go live. If you like Martijn Doolaard’s videos, you will probably like this one as well. It’s calm, slow, more show than tell. You’ll see!

So yes, after almost two years of absence, I will return to my tiny house for good in a few weeks. It feels like a good next step in this journey and I’m excited to share more in the coming videos. Go subscribe to the channel if you haven’t already (or don’t if you don’t want to, I won’t be sad, I promise) and I’ll see you, or, more like, you’ll read from me very soon.

My recovery from ME/CFS - part three: The Cocktail

Outside of classroom physics, A causes B is not really a thing. In real life, it’s more like A plus some C plus a little bit of D plus an unexpected pinch of E causes B. This, and a whole lot of shaking.

Each person’s health cocktail is different. A huge part of the early days in my recovery from ME/CFS was to understand mine better. Ever since I can remember, I dealt with a host of inexplicable and varying symptoms in my body, from gut and stomach pain to nausea, rashes on my legs (early years) and my fingers (later years) and chronic back and neck pain. From severe monthly pain during my period, later diagnosed and treated as endometriosis to strange reactions to chlorine water (dizziness) or alcohol (instant headache). I had sensitivities to many foods (still can’t eat dairy) and my skin would break out if I ate too much sugar. Some of it was diagnosed as one thing or the other over the years, but with the exception of endometriosis and scoliosis, these were all functional diseases. Meaning, ‘We have no idea why you’re hurting.’

When stuff like that starts when you’re so young, of course you’re going to internalize it, as much as you’re trying to fight it (I certainly did). You can’t help but think that you’re probably just too sensitive or trying to get attention because you’re self-centered. You label yourself as weird and complicated so people know that you know that you’re not normal. In swimming lessons I felt like passing out because of the chlorine. When spending the night somewhere else I would often wake up with nausea. When eating something unusual I would get pain in my belly.

My ailments shifted over the years and a lot of times they were so bad that I desperately tried to get answers from specialists. Allergy tests, colonoscopy, back treatments, elimination diets, supplements, I tried it all, fully aware that I looked like a hypochondriac to some. Only I knew the amount of actual pain I was in that caused me to go to all those doctors. I hated the system and it didn’t treat me kindly very often, but not going felt like giving up.

Coming to terms with the fact that my severe illness now, which actually did have a name and a bio-medical explanation in the books, was maybe psychosomatic after all required me to look for the why’s in all this. Parts of that puzzle had been obvious for a few years, others had still remained hidden until now. Painfully slowly through my foggy, hurting head and while still often paralyzed in the recliner chair, I started to piece it together. Here’s the recipe I came up with:

MY HEALTH COCKTAIL: THE HERB GARDEN SOUR

• Base (the main spirit that defines the cocktail)
  50 ml Herbal Gin aka the previous events in my life. When I started trauma therapy in 2023, I felt the need to justify why I thought I needed it (‘It probably wasn’t real trauma, but …’). By now I know.

• Modifier (alters or complements the base flavor)
  20 ml Dry Vermouth aka my neurodivergence. Although it had been on the table since my childhood when I tested for an unusually high IQ, I only did official testing recently. I will probably share more about this along the way since women tend to go undiagnosed for much longer and both autism and adhd present very differently in women than men.

• Accent (adds brightness or punch)
  2 dashes celery bitters aka modern pressure cooker life in an economic system that had alienated me for many years. Working against the notion that I have to just ‘function’ in a specific way to be valuable in society is stressful - and the times we live in with all the stimuli and demands everywhere don’t help much either. I had phantasized about leaving ‘the system’ (whatever that means practically) many times.

• Sweet/Sour component (aiming for balance)
  20 ml fresh lemon juice and 15 ml honey sirup aka the exhausting attempt of trying to please every person, have no conflict and adjust my needs to what others deemed fitting for me.

• Garnish (a final sensory layer)
  a perfect sprig of rosemary or thyme aka my lifelong belief that I had to live up to my utmost potential to be truly happy. In other words, perfectionism.

Now, shake. Voilà, my delicate health. And no, I haven’t actually tried this cocktail. I can now stomach alcohol better than I used to but I still rarely drink, so proceed at your own risk.

What I understood from the recovery stories I watched was that most people had had a similar cocktail to mine or at least some of the same ingredients, and while for many, ME/CFS had been the first severe illness, they had been emotionally stressed beforehand, sometimes from stuff dating back years and years. Like I said in a previous post, it doesn’t rule out a bio-chemical catalyst like an infection, but it was striking to me how similar all these people were, personality-wise.

I’m detailing this here because, as is so often the case with complex issues in our lives, my recovery from ME/CFS very quickly turned into something much bigger - resolving what caused it in the first place. I understood that ‘rushing’ (there is no rushing with ME/CFS) back to health couldn’t be the goal. Even if it would have worked, I would set myself up for the next big health scare a few years later. So instead of focusing on getting better, which puts too much pressure on the process anyway, I soon started to focus on understanding first.

For instance, here’s one key thing I learned: I had been living beyond my energetic means for most of my life, because I thought I could, I thought I had to or I didn’t even realize that that was a thing - boundaries. I had always perceived myself as being emotionally strong and able to do anything (including ‘acting normal’), which led to the false belief that nothing could really affect me if I didn’t want it to. Sure, I took away the positives even from experiences like being bullied in school, which is a key factor of resilience. I was never known to complain, engage in self-pity or perceive myself as ‘the victim’. But on the other hand, I also subjected myself to a lot of emotional neglect and abuse because I was ‘on a mission’ or I thought I could ‘handle it’. I completely underestimated how continued experiences of being ostracized, misunderstood and ridiculed had impacted my feeling of belonging in life, which is already delicate when you’re neurodivergent. And until the moment I finally realized that I was, in fact, autistic, I hadn’t been able to accept that every human encounter outside a very, very small inner circle, even with the ones I really like, takes a lot of energy from me.

Starting to be honest with myself about these things was a tremendous relief and I could feel how it impacted my recovery. No wonder my nervous system started associating everything with ‘danger’ and ‘stress’ - I had practically lived without emotional boundaries for most of my life. I used to be proud of that - that despite my IQ and otherness, I could ‘blend in’ if need be. Now I’m much more proud of my bravery not to do that anymore.

There was much, much more to understand, and for the trauma and emotional part of the puzzle, I relied on my therapist a lot. ME/CFS is an incredibly isolating experience, and like I said, beyond the secondary depression resulting from the illness, there is so often a complex emotional source for psychosomatic illness. It’s much safer and much more comforting to go on that journey with a seasoned guide. I’ve been in trauma therapy for two years and while I couldn’t see my therapist for two months during my worst, she has been with me again as soon as I could sit upright for longer (we meet online). The aforementioned Curable app (affiliate link right there) also has great resources for that, but I think it’s vital to work with at least one professional when it comes to complex issues like that.

I could fill page after page with insights I had during the first few weeks, and I’ll surely share more along the way, but I’d like to dedicate the rest of the post to the somewhat more practical aspects of early recovery for me. As I said in the previous post, my baseline was very low and I could only do a little exercise or two a day sometimes (five minutes of Somatic Tracking, for instance, or a short meditation). I quickly learned that ‘the more the better’ doesn’t apply here anyway. It just takes time. A lot of time.

It’s hard to describe what recovery looks like. After starting to buy into the idea of psychosomatic illness, which conveyed hope concerning a potential recovery, I started to see my symptoms in a different light, which, along with some other strategies I already mentioned, initially helped me to do just a little more on a typical day despite the symptoms. Because now I didn’t have to fear to permanently worsen my condition or cause structural damage to my body.

With every little thing outside your baseline, it’s like you’re doing it for the first time. The nervous system is pretty good at spotting everything you haven’t done since you got sick, so it immediately spiked a little adrenalin when I tried something ‘new’. Like, walking around in the garden for a minute. Or, one of my early achievements, rolling the trash can to the side of the road (our driveway is 100 feet long). Not everything caused bad symptoms, but it always came with this flinch of ‘How is my body going to react?’. It’s since gotten much easier, the chunks of improvement have gotten much bigger and I’m so much less afraid of possible flare-ups, but it’s still there. That’s what you need patience for.

As I already mentioned, physical activity was the first to improve. With cognitive and social exertions, I got symptom feedback almost immediately - brain burn would ensue if I tried to read a few pages in a book or talk to someone for more than a few minutes. Physical activity caused a much more delayed response, which I initially felt was very sinister because it was harder to get a feel for it. But on the other hand, it allowed me to do things and still feel good afterwards, which helped me extend the range of activities quicker. I still remember one day (April or May) when I got up from the patio and decided to wash my car. It’s a very small car and it didn’t need a whole lot of washing but I couldn’t believe I was able to do that now. Fifteen minutes of bliss (with a lot of rest in between).

And then, eventually, a ‘relapse’. Those first months were full of them. I am still unsure if I even want to call it relapse, because that’s not actually what it is. Some recovery programs out there call it ‘adjustment period’, which I think describes it better. Because symptom flare-ups along the way, from everything I’ve read and watched since, are inevitable. I have yet to encounter someone who’s recovered who didn’t have them. Every time they happen, there’s your chance to react just a little more calmly, with a little more compassion and understanding.

Easier said than done, obviously. In the beginning, relapses felt like going straight back to square one, symptom wise. I started watching a recovery interview every single day during that time to remind me that it’s normal. Because it sure doesn’t feel normal. If I had to draw a curve with all improvements and relapses and my baseline in between, singular improvements certainly went up faster than my baseline and relapses remained deeply symptomatic for much longer, meaning that every time I got them, I felt like I had barely made any progress.

But I had. In April, about a month into my recovery, I was on a train for the first time in … however many months. It was surreal. It wasn’t replicable right away (meaning, it didn’t immediately turn into my baseline of ‘always safe’ activities), but it was possible. I started helping with food sometimes. I eventually went to buy a few things at the drugstore for myself (I hadn’t been in a store in three months or so). And then I was back in the recliner chair for a few days. And next time around, I could cook a little meal or work on a small thing in my tiny house. It was sometimes inconceivable to me how this, what I was doing, could possibly be the answer to a severe illness like this one, but it was working.

Ah, there is so much more to say but this post is already so long! More soon.

Watch this: Marvelization and Cabin Life in Italy

When I still had a Discord server, there was a monthly post with all the books, articles, apps and videos I enjoyed. I didn’t pick up on this habit on my blog yet (also because of the fact that until recently, reading wasn’t really happening) but I’d like to make a start now by sharing a few YouTube videos that influenced me over the past months. This probably won’t turn into a monthly series since I don’t want to pressure myself to have something to share all the time, but every now and then you might find a curated list like this one on here to peruse to your liking. Ah, and since this blog keeps with a minimalist aesthetic so far, I refrained from embedding videos or adding thumbnails. Enjoy!

The Marvelization of Cinema by Like Stories of Old

I clicked on this because the thumbnail showed Aragorn in Lord of the Rings and Sauron in The Rings of Power side by side, highlighting the difference in lighting and setting. I have been feeling alienated by modern cinema and shows for a good ten years now, probably dating back to the release of the Hobbit. Tom perfectly captures many of the reasons in his essay. What we’re missing in today’s films and series is genuine passion to create - instead of putting out commercially successful content. There’s much more to explore and I’ll leave it to Tom to explain it. If you’re into good movies and tv shows, you’ll probably resonate.

#1 First Days at my Cabin in the Italian Alps by Martijn Doolaard

Technically, this is not a single video recommendation but an emphatic desire for everyone in the world to watch the whole ongoing series. Martijn is praised in the community for his outstanding cinematography, but most of all, it’s the simple, unassuming display of his life and renovations at 1,200 meters up in the mountains that captivate so many. I started watching during my recovery and have almost caught up to the current episodes. There is nothing more calming, grounding and inspiring on YouTube out there right now if you ask me.

Convenience Is Designed to be Addictive by Design Theory

Thought-provoking arguments on why modern-day technology is deliberately designed to make us into passive consumers rather than active users of tools. The ‘black boxes’ we surround ourselves with, laptops, smart phones, edgeless, clean devices - they don’t bend and adapt to our usage, we adapt to them. This feeds into the larger idea that the way we remove perceived ‘obstacles’ in our lives today leaves us almost incompetent because we have no means of truly engaging with the world anymore.

I hate my phone so I got rid of it by Eddie Burback

The title says it all. Eddie ventures on a thirty-day experiment without his smartphone. Actually, without any phone except a landline which soon becomes the target of spam calls. The video has it all - humor, wit, pensive reflection. If you ever thought about leaving your phone behind for a while and wonder if that’s even possible today, watch this. I certainly took a lot away from it - this wasn’t the first ‘No phone for a month’ video I had watched but in my mind the best and most relatable one so far.

‘You Will Own Nothing’ by Jared Henderson

Subscriptions for everything down to the right to use the hardware you already bought - we live in strange times indeed. Jared breaks down ownership rights and how they are being eroded while addressing the infamous ‘You will own nothing’ quote everybody brings up these days (no, it doesn’t exactly mean what most people think it means). If you want to make informed choices as a customer, it’s important to know about these developments, and Jared offers a nuanced, reasonable perspective on them.

I hope you enjoyed today’s recommendations. I’m reading a lot these days and am struggling to put my thoughts about all I’m learning into one cohesive post so I’ll need some more time with the next one. See you around!

My recovery from ME/CFS - part two: Writings on the wall

My PI wall - at least some of it will make sense to you after you’ve read this post.

After successfully establishing that my condition, as severe as it was, was most likely psychosomatic and therefore at least theoretically reversible, I started my work. What that entailed can be established from the photo - over the course of the next few weeks and in short sessions, often hunched over on the floor because sitting upright was more exhausting, I started to gather information from different sources. Raelan Agle‘s YouTube channel and the interviews with people who have recovered were obviously only one piece of the puzzle and I certainly didn‘t resonate with all that‘s being said there by every single person, but it was a powerful starting point. I wrote little notes of phrases, concepts and therapy approaches that seemed promising and then went to the source to figure out what they were about. Before I share a non-comprehensive list of experts and what I took away from them, here’s a short description of the underlying idea that all of them share. Once again, this is how I understand the illness now - it’s not medical advice (even though it’s being supported by medical professionals) or denial of sickness through structural/bio-chemical influences.

ME/CFS, like many other chronic conditions, is a cluster of symptoms that arise because of nervous system dysregulation. As I learned in my psychology degree, the nervous system consists of different parts, most notably the Central Nervous System with the brain and the spinal cord and the Peripheral Nervous System which contains all other nerves in our body. The Peripheral Nervous System is in charge of pretty much everything our body is doing and contains, amongst others, the Sympathetic and the Parasympathetic Nervous System. The former activates what we know as fight-or-flight, the latter puts us into a rest-and-digest state. (It’s more complex than that but for our purpose, this will do.)

From trauma work we also know that prolonged states of fight-or-flight, which cost a lot of energy to maintain, can result in the body ‘shutting down’ in various forms. This is called a ‘freeze’ response in most mind-body contexts - one of the possible responses to a threat in the world. We can run away, fight back, try to appease the attacker (fawn) or - freeze and pretend we’re dead. The idea behind nervous system dysregulation is that due to extended periods of fight-or-flight, which the body is not adapted to, the nervous system puts us into freeze to conserve energy. It will become hypervigilant for potential threats and start seeing benign occurrences as danger, to the point that things like talking to someone or sitting upright become ‘unsafe’. Because the Autonomous Nervous System has no way of communicating with our consciousness directly, these dangers will show up as symptoms which eventually turn chronic (see below). And since the Autonomic Nervous System controls everything we have no active control over in our body, symptoms can be anything - and as severe as things like POTS (orthostatic intolerance) or cognitive impairment. I have watched countless interviews of people who had been bedbound with Long Covid and completely recovered.

That’s the general gist of it. Most of these things are being discussed in the field of psychotherapy and not medicine - which is not surprising, given that major breakthroughs like Pain Reprocessing Therapy (again, see below) barely make it into mainstream pain medicine yet, although the Boulder Back Pain Study is widely respected and showed immense success with mind-body approaches in chronic back pain. Given how prevalent pain conditions are, doctors are taught very little about them in formal training.

But luckily, there are a few well-trained people out there who dedicate their work to mind-body conditions, so here’s a little list of some of my most influential sources for my own recovery journey. They can be a great starting point for further investigation. It doesn’t necessarily mean that I stand behind every single thing they have ever said but I learned a great deal from them.

• Alan Gordon/Pain Reprocessing Therapy (as detailed in ‘The Way Out’)
  Main Takeaway: Chronic pain without structural cause (i.e. neuroplastic pain) is kept alive through the fear-pain-cycle - we become afraid of our symptoms and thereby signal the nervous system that symptoms are in fact dangerous, which creates a vicious cycle.

• Dr. Howard Schubiner
  Main Takeaway: Unresolved ACEs (adverse childhood experiences) heavily influence the development of chronic conditions and trauma/emotional work can resolve those conditions.

• The Curable app (Affiliate Link)
  Main Takeaway: Developed by neuroscientists, doctors and other experts, this is a comprehensive approach to chronic pain conditions (and explicitly also for ME/CFS patients). I found basically every other approach I mentioned here integrated into it so this is the number one recommendation. Plus, you can try it for free for several weeks and if you can’t afford it later, they will give you a huge discount. The idea is this: You are not responsible for developing your chronic pain/ME/CFS. But you can get out of it by yourself if you have the right tools.

• Nicole Sachs/Journalspeak (as detailed in ‘Mind Your Body’)
  Main Takeaway: Bottled-up emotions, often dating back to childhood, play a huge role in nervous-system dysregulation. Techniques like expressive writing or journalspeak can actively release and explore these emotions. It certainly works for me.

• Tanner Murtagh/Pain Psychotherapy
  Main Takeaway: Signals of safety for your body are key in all stages of recovery to get your nervous system out of prolongued fight-or-flight and freeze responses. That being said, safety doesn’t mean you have to be calm all the time. Challenging experiences and emotions are absolutely part of that - the point is that you and your nervous system have to learn to trust that you can handle them.

With this background, which I gradually built over a few weeks, I started working on my recovery. Again, I was still at my worst, so mostly in my recliner chair. I usually watched one recovery interview per day to motivate me, parts of it often with my eyes closed when it became too exhausting. Other than that, I still spent a lot of time just sitting in the semi-dark and watching time pass because my brain burn (TM) was too strong. I texted with some of my friends in small doses sometimes and ate with my parents who provided my meals. That was pretty much my life.

But mentally, I was finally starting to see some hope through the things I was learning. Working with the Curable app changed things profoundly and I tried to do one exercise per day, along with three sessions of therapeutic humming, which I’ve found very helpful in calming my nervous system and stopping thought spirals. It also doubles as a breathing exercise (long exhales) and is used in psychotherapy in various contexts as well.

Depending on my energy level, I also did an additional meditation or set time aside to train my brain in the techniques I learned on the app. The rest of my time I tried to dedicate on integrating as much joy into my life as possible, despite the symptoms. Depression is a natural consequence of severe illness so on top of your physical symptoms, you also deal with that. It was therefore vital I did as many things as I safely could to make me feel good. Looking at an old coffee-table book for a few minutes. Smelling good food. Short cat videos, if all else failed. (The one time social media actually made sense.) Music, social activities and gaming were still not possible so I stuck with the little I had.

In addition to that, I reminded myself of the following things whenever I could - because no matter how much sense all of the above makes when you hear it, the severity of your symptoms will soon convince you that something must indeed be very broken in your body for you to feel this way. So here are my mantras:

If this is mind-body, then my symptoms don‘t cause permanent damage.

A huge relief was knowing that even though it felt like my head was burning up and I was losing all my cognitive function, this was not brain damage (which got confirmed in my MRI which was absolutely fine). And even if some lab findings are abnormal, well, symptoms are in the body so they will present in a certain bio-chemical way. But knowing what I now knew about the power of the nervous system, I also knew that these things were most likely reversible. That also meant:

I don‘t have to fear my symptoms.

Of course they are horrible and I don‘t want them. But fearing them sends a signal of danger to my nervous system and will label them, as well as any activity I‘m doing while dreading symptoms, as ‘unsafe’. That doesn‘t mean that not fearing them instantly cured me. But over time it reduced symptoms and PEM and increased range of motion and activity. A very helpful practice I’ve used almost daily is Somatic Tracking.

There is a reason why my nervous system is acting this way.

The nervous system is dysregulated because of ongoing stress. This can be all sorts of stress, and as I learned along the way, I was practically ticking all the boxes. Childhood and youth adverse experiences (aka trauma), type A personality (‘go, go, go’ mentality, perfectionist), recent major life change, past infections, history of psychosomatic illness that had been unresolved, neurodivergence, etc. This was a long list and it didn‘t mean I had to resolve all of that to make progress, but I had to acknowledge my issues and struggles honestly. It‘s been a long road since but I did see improvement almost immediately. As you can see in the image above, sometimes there were big jumps, like with a long reading session all of a sudden. Sometimes that still proved to be too much and I had to backtrack quite a bit. I’ll probably talk more about that in a future post.

If I’m stuck, I’m likely supposed to give my emotions space.

Might sound weird but it‘s true for me and for many, many others people who have recovered. Unresolved emotions are a huge deal in trauma and beyond and the more I started to work on that, the better I got. I often used guided meditations for that purpose or techniques like journalspeak or expressive writing. By now I‘m pretty good at spotting when something is lingering below the surface and I have to address it. And no, it‘s often not just the obvious every day stuff. Lots of trips to your childhood will ensue.

The expectation to recover will not get me anywhere.

Like I said, one of the most frequently used techniques for me is Somatic Tracking which helps you change your relationship to ongoing symptoms. Alan Gordon specifically says, ‘It won‘t work if you expect it to lessen your symptoms‘, although it often does exactly this - but only if you don‘t force it. The reason is simple. If you build pressure, your stressed nervous system is going to react a certain way. Whenever I tried to force recovery or became impatient, it backfired. It‘s going to take as long as it takes. For some, that‘s just weeks. For most, it‘s months. For others, it‘s years. After all, the circumstances are very different for everyone. Some have support, some don‘t. Some already have other healthy habits, some don‘t. I found that I didn’t have to believe at all times that I was on the right track but I had to be open to the idea.

This sucks, but it‘s the biggest chance I am likely ever going to get to resolve my issues.

In 2024, I felt like I was already building a new life when ME/CFS hit, so it seemed deeply unfair that this was all taken from me. But despite it all, I learned to be grateful. Because I was carrying decades of emotional stress, my new life would not have worked out either. So now, rid of all my work and social life, with practically nothing left, I could take the break I needed. Of course we would like to enjoy our breaks with full health and a lush background of active friendships and fun activities. But let‘s be honest - who is going to take a radical break from life if they are not sick? I certainly wouldn’t have.

In those first few weeks, every little thing was showered with gratefulness. I was able to make my own breakfast? Hooray! I could lie in bed in the morning and not feel brain burn? Awesome! And when my symptoms inevitably did come back or make me quit what I was doing, I was trying to thank the body for the message instead of going into panic mode. It takes practice. We grow up in a medical system which often promises immediate results, like with pain killers. (Which never worked for my brain burn, not even the strong ones.) We‘re not used to repeated effort without visible outcome that we have to keep up for days or weeks to see a difference. But that‘s exactly what this work is. Every day, especially on the hard ones, I told myself: trust the process.

I started to track progress instead of symptoms. My stamina and my confidence were so low that initially, one minute of standing upright sometimes felt like a challenge, so I set a timer. Gradually, I got up to three, then five, then seven minutes. One thing that always helped me was knowing that symptoms could appear. The nervous system knew I was probing the waters. But over time, it wasn‘t perceived as dangerous anymore so one minute was considered ‘safe’, and then two minutes, and so forth. I had to do this with pretty much everything in the beginning. Talking to someone. Reading. Gaming. Household. But it worked.

There are different areas of activity in life and not all of them were equally improving, which I now know is very common. Building physical strength was the most important piece for me initially, so I could sit outside more, for instance. Social activities like conversations were much harder to build up and are still the first to crumble when I‘m weaker. I’ve come to accept that.

But I‘m getting ahead of myself. It‘s hard to cut all of this up into individual posts but I don‘t want this to be too long so I‘ll share more next time. As is hopefully clear, I‘m still learning and I‘m not fully recovered yet but I’m so much better already and judging by everyone else‘s story, I have the best chances of making a full recovery. More soon.

You shall not pass.

The year is 2012 and I’m sitting in a packed auditorium to hear John Searle speak at my university. As a passionate linguist, it is a pleasure to hear the famous philosopher go on about language in all its forms and rant about culture on the side. One concept in particular he’s known for: Language is more than just words. It performs actions - subtly so in ‘mmh’ (when you’re listening to someone) and very obviously so in ‘I promise to call you’.

Speech acts can have many different functions, and whereas small acts like asserting something that’s already widely known (‘It’s raining’) don’t usually have much of an impact, others, especially declarations, can alter your life in an instant - since we all believe, more or less by force, in a set of social rules that will grant certain people power over your life through certain words. ‘I declare you husband and wife’ is the most prominent example - those few words have vast legal implications.

One function such declarative language can assume is that of gatekeeping. You have a certain request and a person or institution will, by law or silent agreement, have the power to grant this request or deny it. Go about your day and you will find many examples of that; a clerk reluctantly applying a discount code you brought that actually expired two days ago, an insurance denying your claim about the roof damage due to storm, city council approving your building permit (after, like, ten thousand years) or Instagram denying your request to take down a post that steals your content. It’s everywhere.

Gatekeeping can play a valuable role in society. After all, applying a set of standards to something and determining whether or not it meets them is the only way to execute quality control, whether that’s in food, tech or training of professionals. If ‘everything goes’ became the norm for, well, everything, we would be lost. We sure are grateful for background checks for anyone working with children and we certainly rely on regular check-ups for trains, planes and buildings, just to name a few examples.

Gatekeeping is performed by different bodies these days, but outside of algorithms, it’s mostly still humans (and even the algorithms are trained on human behavior). The verdict, in the form of a ‘yes’ or ‘no’, ‘you’re in’ or ‘you’re out’, uttered vocally by a human or in a standardized letter, can have vast implications. In this sense, language really is action.

2012 was not just the year I heard John Searle speak (one of the most fun talks I’ve attended during my uni years), it was also the year my scholarship was up for review. I was in my fourth semester, studying German and Latin for a teaching degree for secondary schools, and the only reason I had been able to pick up this degree was because of said scholarship. My first university had been close enough to home for me to take the train every day, even though that meant an hour each way on top of my long uni days, lab afternoons and my side job - and picking Biology as a second subject because nothing else was available for me there. I was burnt out pretty quickly and also pretty unhappy with the education in general, so a change was due. The only issue: money. I simply couldn’t afford moving out of my childhood bedroom to a different city, not even with my job and BAFöG (which, quite frankly, was a joke - they gave me 78 bucks per month).

Luckily, due to my good grades in my a-levels and social engagement, I had been awarded a scholarship just before the first semester was over. It covered my living expenses and helped me make the transition to a new university. I still worked on the side from time to time but was otherwise able to focus on my degree - and with over 50 h of expected workload each week, I also simply had no other choice.

The scholarship was preliminary, meaning a review would be up after some time. You had to prove that you were still among the top students of your subject. I had been talking to my professors who were to hand in performance reviews and although it had been a rough start in Latin for all of us (40 % of our class, including me, failed the first translation course), at that point I was pretty confident that I was doing okay.

Rule of law had it that my performance review in Latin had to be signed by the head of the department in order to be handed in. Chance had it that this was the professor in whose class I had failed in my first semester. I wasn’t exactly looking forward to that conversation but I was assuming that based on said performance reviews and my grades in my other courses, I could convince him.

That is, until I walked into his office. He looked at me with this mix of incomprehension and ‘tough luck’ and said, ‘Ms. Koßmann, you failed my course. That means you haven’t understood much. I can’t sign this.’ The following short conversation was ugly, especially when he said that my scholarship was like Mount Olympus and only the best deserved it. His language softened somewhat when he understood that his ‘no’ might mean that I would have to give up my entire future because I couldn’t afford studying without financial help. Like, at all. I mean, it was a state university, not a private school. I already lived out of town in an uninsulated flat share to save money. If it wasn’t going to work here, it wasn’t going to work anywhere. And yet, he refused his signature, despite the fact that it wasn’t even about being accepted into the scholarship, it was simply about continuing to receive it. He had seen me fail in one exam, and for him, that was enough. I left the office crying, humiliated and very unsure of my future. One word, ‘no’, could send me back home, without any idea how to continue in life.

The idea behind gatekeeping is structure. We put things into subgroups to make our lives easier. We don’t have to evaluate every little thing every time we encounter someone or something. Pre-formed labels given by authority figures will give us information and help us distribute people and resources according to their properties. And I had just been handed the ‘unworthy’ sticker.

Through social rules, spoken and unspoken, we grant some people the power to decide over our fate, and in this world where we have schedules with five-minute appointments, standardized forms and call centers, these decisions often depend on many things but not the validity of our claim. If my professor would have taken the time to learn about my previous achievements outside of his course, he might have discovered that I had won a prize for my outstanding a-level exam in Latin. He might have learned that I had won several prizes in regional Classics competitions. He might have understood that I was the first in my family to go to university at all. He might have changed his mind. But in those five minutes he had between his lecture and some other duties, he had to base his decision on the little he knew about me already - my grade in my first exam at uni.

On my journey with endometriosis and other chronic conditions, I’ve had this experience many times. Stressed and mentally absent doctors rush into their office where I have a hard time getting a word in before they tell me their verdict, sometimes without even so much as an exam. Whether or not I could have access to life-altering surgery depended on the opinion of doctors who saw me for as little as five minutes. Again, sometimes without so much as an exam. And to make that clear, many of the doctors who denied me surgery would have changed their mind, had they taken the time to look at my condition properly. Which is not just a wild guess - you just need to look at the results of the surgery. No, it wasn’t ‘just period pain’ (whatever that means anyway).

As John Searle says, speech is an act, but the same act means two different things to two different people. My professor and some of the doctors who told me ‘no’ were, in their mind, probably just protecting a sort of sacred elite space where only the worthy ones can enter, whether it’s a scholarship or the group of those who are ‘sick enough’ to receive help. It sounds cynical when I put it like this but I actually understand where they’re coming from. It’s your job to make distinctions, you worked your way up past many obstacles to get there, you have little time, so you do what you do. And in the case of surgeries, you also want to protect people from undergoing procedures they don’t need.

However, I’m a perfect example of what happens when your gatekeeping is rushed, lacks empathy and understanding or comes from the elitist idea that someone has to be subjectively ‘worthy’ to receive help. I was being told ‘no’. But I still needed the money and I still needed the surgery. So I still pursued both things, it had just become even harder to get them and I did it with almost a guilty conscience.

In 2012, I talked to my scholarship representative and my other professors. Eventually I was granted the permanent scholarship without the needed signature. I graduated with an average of 1,7 (B+) three years later, all thanks to the financial support I had continued to receive. In 2022, after the procedure being denied several times in previous years, I received surgery for endometriosis and have been mostly pain-free since. While I don’t hold a grudge against my doctors or my professor, it still left the uneasy feeling that in this world, if you’re not born with enough power and money to make your own decisions at all times, you will be made to feel unworthy many times, especially while you’re vulnerable.

To the surprise of no one, I have since embarked on the quest of making myself financially and otherwise as independent as possible from institutions, insurances and other impersonal authorities. Denial in and of itself is not the issue. I received many ‘We’re sorry, but’ letters in my life as I applied to assistant teaching jobs abroad, publishers for my novels or modeling opportunities. It’s part of all of my careers and I found that I usually recover from rejection rather quickly. However, medical and financial help in dire situations is a very different story, especially if the delivery of rejection makes you feel like you are the problem. I have seen sides of the legal, medical and social system that I can’t unsee and yes, it made me lose my trust.

Trust that gatekeeping is being done based on reason and empathy, and not based on how well someone liked the lunch they’ve just had (there are studies, I invite you to read up on that). Trust that people take their time to distinguish between someone who just came for the money grab and someone who actually needs help. Trust that people are aware of their power and have been trained to use it wisely. Because on the surface, it’s really just a few words in a long work day, a little speedrun side-quest that the gatekeeper might even forget about shortly after, but for the person on the other side, it changes everything.

The ‘no’ I received was so many speech acts in one. It was expressive (‘I don’t think you deserve your scholarship’). It was assertive (‘You are not part of an elite’). And it was commissive (‘I won’t sign this’). But the strongest feeling of helplessness came from the declarative part. ‘I declare you unworthy of my support.’ Even if I didn’t want to, a part of me secretly said, ‘He’s probably right.’ The curriculum was insane and we regularly had students in tears in class because we couldn’t keep up with the workload, but I worked as hard as I could. And when I did get my permanent scholarship, for a long time I thought of myself as an imposter because I wasn’t getting straight As, didn’t have an entire dictionary rent-free in my head, wasn’t joyfully leafing through Oxford editions of Ovid in my spare time (which consisted mostly of memorizing 15 pages of grammar rules each week).

As humans, we are territorial, and funny enough, when we had it hard in life, we are sometimes more likely to make other people’s lives just as hard. In passing, when explaining to me why he deemed me unfit for the honor that my scholarship came with, my professor mentioned that he hadn’t received one when he was younger. I think we’re sometimes stuck on the idea of not making it ‘too easy’ for younger generations, thereby making it too hard. His financial gatekeeping hadn’t worked, but the psychological stuck with me for a long time, also because of the way it had been delivered.

When I graduated in 2015, I already knew I wasn’t going to end up being a teacher. Apart from many other things, the idea of just being another gatekeeper, rushing through my day and casually distinguishing between ‘worthy’ and ‘unworthy’ students through grades and performance reviews, left me feeling empty. Sure, there are correlations between school performance and later performances at uni or in jobs, so it’s not entirely arbitrary, and I was obviously proud of my success in school. But to put it with John Searle, I was done with all these declarative speech acts. I wanted to work in a world which wasn’t constantly about whether or not someone is ‘good enough’.

In late 2015 I visited Oxford university. If anything screams ‘academic elite’, it’s this place. I could have applied for a masters’ there but I decided not to, mainly because the expected workload would have had the same effect on my mental health as in my previous degree - and I would once again have had to rely on a scholarship to finance it.

I loved the tour, though, and unfortunately missed Sir Ian McKellen, who had been invited to the colleges numerous times over the years. As to be expected, when giving motivational speeches in front of students, he is often heard saying: ‘And study hard or … you shall not pass.’ (If you haven’t watched Lord of the Rings, this won’t make sense to you, I’m afraid.) The quote in the movie is an impressive example of a speech act (granted, a bit of actual wizardry is probably also involved), but it also shows that the power of words is ultimately limited and life can prove you wrong. Yes, Gandalf prevented the Balrog from passing the bridge, but he also fell into darkness with it. Basically, just because someone says you won’t pass a test, won’t be fit for a certain job, won’t be ‘good enough’, doesn’t mean this is any final verdict over you, and certainly not your character. Gandalf underestimated the Balrog, just like you will be underestimated many times in your life.

Don’t let that define you.

The joy of birdsong

I’ve been thinking about presence a lot lately. I mean, how could I not, perched in a hanging chair on my family’s patio, managing my energy for the day? It’s this societal trope, reiterated almost ad nauseam, that we are supposed to live in the moment. And as with all things that are being said too much in passing, we hardly ever stop to wonder what the heck that actually means.

The photograph you see above was taken in early 2012, by me. It was a lucky shot and to my knowledge, I had never before taken a picture of a bird while it was singing. In fact, I hadn’t taken many pictures of birds to begin with, except of a few napping seagulls on our family trip to the Northern Sea once. Up until later in life, I wasn’t very interested in nature. I mean, I was interested in nature because I loved beautiful landscapes and something drew me to secluded, cave-like, serene, mysterious spots outdoors sometimes. But dandelion was about the only plant I could identify on a meadow and in terms of birds, it was crows, blackbirds, pigeons and, yeah, seagulls. (I’d like to point out that there are approximately fifty different species of seagulls. I bet you didn’t know that. I didn’t either until, like, two minutes ago.)

The picture above shows a robin and as I know now, they are one of the easier shots when you try to get a bird on film while singing. What strikes me about this image today are two things. Number one, it was taken in Kew Gardens, London, a place I’d really like to see again. (I didn’t live far from there in 2013.) Number two, I remember the scene as I took the photo - in a green house with my family, as we wandered around - but I don’t remember the bird song at all. Knowing a thing or two about the brain, I’m assuming that I can’t remember something that I couldn’t categorize back then. Bird song is bird song, right?

Well. Welcome to 2025, the year where I finally realized that not only are there fifty species of seagulls in the world, there are also at least fifty different species of birds around you all the time if you know what to look for - acoustically or visually. If you commute between a place you live and a place you work at and you talk occasional walks through a park or a forest, you will, like me, end up encountering dozens and dozens of different birds. I know because I have proof in my app (I use Merlin Bird ID, it’s free), which conveniently shows me which bird is singing at the moment, as long as there’s not too much noise.

To be fair, my birding journey already started a year ago when I downloaded the app. With my mother being a hobby ornothologist, I guess it was ultimately a matter of time and I’ve now been known to stop in my tracks and listen intently or stare into the foliage of nearby trees to figure out who’s singing or complaining and why. My life list of all birds I have encountered so far include pearls like the chiffchaff, the short-toed treecreeper and the cutest bird of all time, the long-tailed tit. I swear I’m not making this up.

As of today, I’m fairly confident in pointing out about ten to twenty different species by either look or song (don’t test me on the calls though) and I burst into childish delight when some of them come to the feeder in front of my family’s kitchen window. Not only is it adorable to watch sparrows and great tits (chrm) peck at grains and make a mess, I also feel closer to all of this because I now know them by name and recognize at least a little bit of their behavior.

So when my mum and I were in the car today, a little disappointed still that we couldn’t make out what that one bird had been we had just heard, I pointed out that it’s really odd how little most people, including my past self, know about birds because they are everywhere. And not just visually, like insects or ‘weeds’, as we snarkily call all the plants we don’t want or understand, but acoustically. Bird songs, especially in spring and summer, are actually pretty hard to miss, but because we can’t tell them apart, they become background noise. Beautiful background noise for the most part (although a broken-record pigeon or an upset magpie are … a little hard on the ears), but background noise nonetheless.

And this is where I return to my initial statement about being in the moment, because our thinking brain, commonly referred to as the consciousness, does exactly this. It turns everything into background noise as long as we’re able to run on auto-pilot (which is actually most of the time, luckily, life would be too exhausting otherwise), only to focus instead on rumination, speculation and planning. In short, we are dissociated from the present moment to a certain extent for a large portion of our lives. Ever driven your car someplace familiar and thought about something else while driving? Trailed off during a conversation with a friend? That’s everyday-life dissociation. It’s also one of the reasons why we believe that the years go by faster and faster as we age - the more routine or familiar experiences we have, the more we can run on auto-pilot and the less aware we are of time passing (amongst other factors obviously).

As common as dissociation is (not just in trauma, which would be a different post) and as useful as it can be to manage energy/engagement and to collect our thoughts from time to time, we have also collectively come to realize that when we spend too much time ‘in our heads’ instead of ‘in the moment’, we tend to be more anxious about the future or resentful about the past and we simply don’t experience life as intensely as we could. In other words, we tend to feel the most alive when we are fully present in the situation that we’re in. And how do we do that? By turning background noise into meaningful language.

Having a very active thinking brain, I’ve been on a mindfulness journey for a few years. I’ve tried different forms of meditation (not all of them are designed to ground you in your surroundings, some actually do the opposite) and, through cooking, time spent outdoors and little sensory experiments, slowly started to immerse myself more. A shower on the coldest setting does wonders to quiet the mind, as does the scent of fresh herbs while chopping.

When birding came around, it took things to a whole new level, though. Because, again, birds are actually everywhere. So any time I was outside or close to a window, I could listen and observe. And before I knew it, my senses would reliably alert me to songs both familiar and new whenever I went out. It’s like when you recognize different types of vehicles by their sounds - but about one thousand percent more wholesome. Unlike car sounds, the birds will tell you where the cats are (magpies are very vocal about that), whether there’s rain coming or that the sun is setting. They will sit on roof tops or in bushes or fly high above your head. Their presence will tell you about vegetation, season or pollution. It’s like your awareness of your surroundings is expanding all of a sudden - where before there was chaotic and seemingly boring input, now there is meaning and definition. I’m more aware of where I am because I can read my surroundings better.

And the beautiful thing about this is that it doesn’t require any additional thinking. You don’t even have to know if it’s actually a blackcap you’re hearing or a garden warbler. Being in the moment, I find, is not just about being aware of your sensory input rather than your circling thoughts. It’s also very much the ability to simply enjoy what’s around you. And no matter where you are in life or what you’re dealing with, there is an inexplicable joy in opening your window on a late June day around sunset and hearing a blackbird sing somewhere in the distance. I’m actually hearing one right now as I’m writing this. We are so used to run around in our internal factory of thoughts big and small that we forget this simple truth - there is nothing, and I mean, nothing except the here and now. There is absolutely no harm in putting our thoughts aside for a while and just listen.

May this beautiful bird song remind us of that every day.

My recovery from ME/CFS - part one: and … go!

Hello again, everyone, and sorry for the delay. I was in a bit of a relapse situation, as is very common during recovery, but the brain fog is lifting so here we go.

In my last post I referred to some factors of my illness as cues. Why? As you know, I also work in opera, ballet and theater (and a little television back in the day). In the backstage world, cues are little timestamps in the play or show that indicate that something is supposed to happen or change, like a kabuki curtain falling (an effect I love) or someone entering the scene. These cues are timed by either music or other reference points in the procedure and are overseen by, in our case, one or several stage managers. When the time has come, they will shout or whisper (depending on the current music volume) ‘Stand by for cue 38. And … go!’, which will then set stage technicians or singers or dancers into motion. Each cue also has a consecutive number so there are no mix ups (theoretically).

So basically, you see the singer step forward on stage, swinging his glittery pole around, and you’re like, huh, that’s the cue for our aerealist to be lowered onto the scene. Except that it doesn’t happen because the machine broke and the aerealist is basically stuck in between fly bars thirty feet in the air for twenty minutes, but that’s a story for another day.

Why am I telling you this? (Apart from the fact that stage life is cool and I can’t stop gushing about it.) Because well before I actually started working on my recovery, time and again a little innocuous cue prompted me to look at my illness and understand. At the time, I just didn’t take them seriously yet, postponed my reaction or overlooked them entirely. Which is, like, human consciousness 101.

Before we get into the cues and what they were telling me, here’s where I was at when they finally hit me. In my last post, I detailed my condition at my worst. At that point, I cried pretty much every single day and sometimes counted the hours until it was time for bed because sleep would make everything go away for a while. It was all just extremely unclear. It was unclear if any doctor would ever find something structurally wrong with me. It was unclear if I actually had ME/CFS because everyone was reluctant to give me the official diagnosis, despite everything else being ruled out. It was unclear how my life was going to continue and how far I was going to deteriorate. It was unclear how I would manage the situation financially in the long run, as a freelancer. And it was unclear how I was supposed to live with that amount of pain, unresponsive to meds (except for the side effects, yay), for an indefinite amount of time. Rough.

To give you a quick idea of the medical help I was receiving: I reached out to the pain specialist who had treated me for endometriosis a few years prior. They wanted me to fill out a fourteen page questionnaire which, in my state, took several days and worsened my symptoms. When the secretary got back to me, she said the doctor had looked at my file (I had also attached an overview of what’s been done so far and what I needed) and said ‘We can’t treat you.’ That was it. No further explanation. That was pretty much the standard experience.

In early March, my neurologist appointment was finally up (which my mum had gotten for me by being on hold for thirty minutes, brave her). The drive was a full hour and we waited for twenty minutes, me in my sunglasses and leaning onto anything I could find because it was exhausting to sit for so long. I got an EEG done and was finally told in a five minute monologue that he couldn’t find anything and was sending me over to an MRI. No, he was not going to diagnose me, and something in his demeanor (which got confirmed in a follow-up appointment much later) told me that he wasn’t really expecting anything to be physically wrong with me.

There were often weeks or months between these appointments (or lack thereof) and when I came home that day, head exploding and going into hibernation for the following four days, I think I was just angry. The general lack of care and respect for patients who are clearly suffering tremendously made me stubborn enough to be like: If you won’t help me, I’m going to do this on my own.

And so, when I lay there, humming to myself to alleviate my headache, I went on my phone and, in small one to five minute increments I typed ‘How I recovered from CFS’ into the YouTube search bar. As with anything in life, there were probably people who had done it before me. With my eyes closed because it hurt too much, I listened to Raelan Agle detailing her own recovery from ME/CFS a few years ago. And while she was talking, I started picking up on those cues from prior months. Here’s what they were.

• My symptoms (fatigue, heaviness, brain fog, headaches, throat pain, pressure on chest) hadn’t been consistent over time. Some of them had even vanished altogether while new symptoms had popped up out of nowhere.

• There was, so far, no major structural reason to be found for why my health was deteriorating so much. And even if a mitochondria test (which I had wanted to get for a long time) would reveal malfunctions or my upcoming MRI would show neuroinflammation, no one could fix that with medication or procedures.

• My symptoms had started after a very stressful phase of my life had come to an end.

• I was in trauma therapy before so I knew that my body was still dealing with childhood and youth stuff.

• The same triggers (cognitive tasks, physical exertion etc.) didn’t always cause the same intensity of symptoms.

• When emotionally overwhelmed or fearful of the future, my symptoms got much worse.

• I had known my body to show inexplicable symptoms (IBS, back pain, rashes etc.) all my life.

I later learned that those are the exact criteria Alan Gordon uses to identify neuroplastic pain as opposed to structural pain. I was checking all the boxes. For what? Well, for experiencing not a physical illness but a mind-body (aka psychosomatic) condition. Oof.

But even as the realization dawned on me, I remained skeptical. First of all, I still fully expected to hear a bunch of woo woo about supplements and positive thinking at some point in the video (didn’t happen; thanks, Raelan). And second, there was a lot of internal resistance to this idea, especially in my case.

In 2022, after fifteen years of suffering through intense monthly pain for which I was eventually being prescribed opioids (that I never took because I was scared of their effects), I was finally diagnosed with endometriosis and received surgery. The tissue where no tissue belonged as well as my uterus were being removed and I have since been relieved of my pain almost entirely (sometimes there’s a little bit but it’s gotten rare). The reason it had taken fifteen years to get the procedure was that despite the late confirmation that it was, in fact, a structural illness, almost no doctor had believed me. So trust me when I say that leaning into the ‘it’s just stress’ narrative (which is not what psychosomatic illness is about, as I later learned) wasn’t something I was prepared for.

Furthermore, it is really, and I mean really, hard to believe that something like my severe ‘brain burn’, as I called it, PEM or a chronically inflamed throat can be psychosomatic. I have since seen people recover from even crazier symptoms with a mind-body approach but initially, you’re like: no. way. Especially since the official medical model of ME/CFS is that it’s multi-systemic, neuro-immunological, severe, incurable. If you hear this often enough, you believe it, and the intensity of your symptoms makes it very easy.

With psychosomatic or mind-body conditions, there are a lot of misconceptions that even doctors have stuck in their head and that make it very hard to accept you actually have one:

• For some reason, stress-related illnesses seem to get less attention because doctors are only there to treat ‘the real stuff’. Stupid.

• Psychosomatic illness is not equivalent to ‘you have stress in your life’. There are more complex explanations for why your body is exhibiting symptoms without structural cause.

• Findings in labs and MRIs that are abnormal are immediately seen as proof that the pain comes from there, despite numerous studies that show little correlation between structural findings and pain, for instance with back pain.

• We associate psychosomatic illness with being ‘emotionally weak’ so having an ‘actual’ disease with a name and a bio-chemical explanation makes us feel a little better.

• Some people have the misguided idea that you are somehow responsible for this condition happening to you if it’s mind-body. Nah. I didn’t choose my trauma either.

• Speaking of trauma, many people believe that their childhood or adult life experiences don’t ‘qualify’ for a good reason for mind-body issues. Like, ‘oh, but it wasn’t that bad.’ Well. You might be surprised.

• And - saving the best for last - psychosomatic illness does not mean it’s in your head, as in, you make up the pain, you can snap out of it or you’re exaggerating. It is in your head, as every pain is happening in your head (brain), but in the acute phase of it happening, you have about as much control over it as you have over a heart attack (which is also, as we know, a result of various forms of stress on the body).

All that is to say, when I listened to Raelan’s story, I was unsure but curious - she fully recovered many years ago, after all. I still struggled with some of the ideas in the list above, and understandably so, but with the medical model of my condition I had adapted before, there was no hope. Partial improvement maybe, but I would never fully recover. Seeing this as mind-body would change everything, but I was also aware of the potential false hope. Nevertheless, I kept digging, and over the next few days I found that there are actually a lot of people out there who have fully recovered, many of them sick for much longer than me and much more severely, including quite a few who did have abnormal lab results or structural findings. And on average, their level of critical awareness was similar to mine. So maybe I was actually on to something.

Now, before we get all worked up, I’m not going to deny anyone’s experience of ME/CFS as a strucural illness. Obviously. My own experience had been denied many times before. I’m stating what I’ve found (and have seen backed up by science since then) to indicate that for the first time, I had reason to believe that I could actually get out of all this.

I’m not known for being a believer. I play the devil’s advocate in discussions out of habit - because I want all sides to be seen. I seldom take a stance, and when I do, I often change it over the years when I realize that I had been wrong. When forced to ‘make up my mind’, my viewpoints will often shift from day to day based on the current evidence. So even with all these new insights in mind, in most moments on most days, it was hard to imagine that there was no structural reason for my condition. Why would my brain make me suffer so much? I couldn’t make my own breakfast, I couldn’t talk to my friends, I couldn’t go outside.

But luckily, I didn’t have to believe in anything to get started. And by the way, to this day I haven’t fully given up the idea that as a sort of catalyst to all of this, something maybe did happen to my body. While pre-Covid, many people correlated ME/CFS with EBV infections, nowadays there’s a lot more talk about lingering Covid viruses and spike proteins from the vaccine. I had had reactions to all three and it seems ignorant to rule out the possibility that they are involved in it all, but what changed everything for me was to allow for the possibility that there was a different explanation underneath all this. And I will talk more about what that entailed and how I got on track with my recovery in my next post of this series. I know this was a long one and I still feel like I couldn’t do it all justice but it’s a start. See ya, folks.

My recovery from ME/CFS - prologue

My journey with ME/CFS started out like most people’s journey with most illnesses. I was getting symptoms and I thought something was wrong. Well, something was indeed very wrong, but not in the way I thought.

This will be a multi part series. Many people on YouTube and beyond have asked me to detail my journey with and through this illness, and I think it’s in fact worth sharing because so much of it applies to so many of us, certainly well beyond the boundaries of individual medical conditions. Ready to hear how it all began? Let’s do this.

In spring of 2024, I was busy building a new life. I had separated from my husband in late 2023 and had since moved out of my tiny house and into a studio flat in a bigger town in an attempt to kindle a new social life. I loved my new place (I still do) and despite some common difficulties that arise when you’re an introvert and all your hobbies are solitary, I managed to slowly build something for myself. I had my job at the opera, my sister had recently gotten married and I had even met someone with whom I thought it was going to work out. Until it really, really didn’t.

In the aftermath of all that and while still figuring out the ins and outs of my new town life, I started getting throat pain, which initially didn’t do much except keep me from enjoying my choir rehearsals as much as I otherwise did. Then it prevented me from going to the rehearsals. I was haphazardly diagnosing myself with tonsillitis if anyone was asking but other than that I didn’t do much about it. I had known my body to produce weird symptoms all my life (cue 1).

A few weeks later I started to feel fatigued as well. It was a stressful time and I also got chest pain so I took the hint and stayed clear of dating and anything that seemed even remotely draining. I went to the Black Forest for a ten day hiking and biking trip (well documented on my channel, cough) and I thought, maybe this was just a passing thing.

When I came back in mid August, I had taken on a little job in the place I had been staying in - taking over their Instagram channel. We had scheduled a weekend of photo and video shoots a couple of weeks later and I had a blast, until I felt like I was getting really, really sick on the last day. My head was exploding and when I was home I developed a fever and more fatigue. All the way through September I felt generally sick, my lymph nodes were often swollen, my throat aching and my head throbbing. And anything I did that was remotely exhausting got me crashing on the couch.

At that point, I had dropped my previous half-serious self-diagnoses and suspected that maybe it was ME/CFS. I went to my GP, who has known me half my life, and she agreed, referring me to specialists who eventually declined to see me (full waitlist). I did think that my emotional stress in the year leading up to that point had a lot to do with it (cue 2), but the symptoms were so persistent and seemed to follow activities that I actually enjoyed, so I had a hard time believing that this was psychosomatic.

The way I understood it back then, ME/CFS or myalgic encephalomyelitis or chronic fatigue syndrome is a medical condition where your body loses its ability to recover. From, like, anything. There’s different theories behind it, antibodies, mitochondria, inflammation, the whole shebang. Most people have chronic pain with it that gets worse after any form of activity (depending on your severity, ‘activity’ can include stuff like eating), as well as severe fatigue that won’t get better after resting. Physical activity outside your baseline can result in either PEM (post-exertional malaise; a delayed response of sickness, in my case the day or the second day after) or a crash, which is PEM, but in a more permanent form. Some people can still go to work, others are bedbound and unable to speak (e.g. Dianna Cowern, also known as Physics Girl, in her most severe years). In other words, it doesn’t just sound like living hell, I can confirm first hand that it actually is living hell. There is no official treatment, let alone cure for it. When Long Covid came around, which is very similar, it got a little more attention and some say there will be medication in a few years, but for reasons which will become obvious later on, I remain skeptical about that.

Late September I was supposed to be back at work at the opera house, working in props for three weeks during a ballet guest performance. The evening before my first work day, I had absolutely no clue how I was going to be able to do it. I had been mostly couchbound for a few days and I was looking at well over seven days of ten to twelve hour shifts in a row. You know, one of those jobs where you easily get your 15.000 steps a day.

I got up the next day and told myself: ‘If I have ME/CFS and if going to work will result in a terrible crash from which I won’t recover, then at least I made it worth my while.’ Needless to say, I love my job. So I went. While we were assembling about twenty ballet bars made from what looked like old metal heat pipes, I felt dizzy and thought: ‘This was a bad idea.’ But then, miraculously, it got better and I was able to fully participate in the production for the whole of three weeks (cue 3).

After which I crashed and was unable to do my own grocery shopping, attend activities or gatherings or even go on a walk. All that confirmed the diagnosis further and was scary as f. I went to a couple of more doctors to rule out other forms of illness with similar symptoms. Everything came back negative. Early December I was back at the opera for another production and again, I was able to work for about a week, only that this time, I didn’t crash after and was able to spend Christmas time and the following days with my family, see friends and do everything pretty much like I normally would, except that I was sometimes a little tired. I thought, okay, maybe this was it now. I made plans for 2025, one of them being to take time to recover from everything that had happened and that was still to come (my divorce was up in a few weeks).

I remember the exact moment when my symptoms came back. It was December 31st and I was about to hit the streets with my neighbor - we had planned to have a fancy dinner and then each celebrate New Year’s Eve our own ways. Before we headed out, I got a phone call from my former host and now boss that I was doing Instagram for. We discussed the plans for next year and after we hung up, my body just said no. I once again got flu-like symptoms which I was able to ignore long enough to still go out to that dinner (it was awesome) and watch the finale of LOST season 1 again during the fireworks (that was awesome too). From then on, it was a slow and steady decline.

Initially, I followed what I believed was a valid pacing strategy - meaning, I rested for the most part on most days and then used the ‘saved’ energy on going out once a week to do grocery shopping or take a walk. That’s not a sustainable way to use very limited energy, as I now know, and it led to stronger and stronger PEM after each activity, resulting in me being mostly housebound pretty quickly. My headaches were very bad and didn’t respond to any pain killer. The fatigue had already prevented me from reading books the previous fall, now I started having trouble sitting at the computer for longer stretches. Initially, only being able to focus on work for short periods, I could spend the rest of my days gaming and watching my favorite shows. Over time, this became more and more difficult.

I had dropped out of my choir completely, repeatedly canceled meet ups with friends because I wasn’t functioning and started preparing my meals while seated. Yet, I was trying to hold on to what was left - mainly my job as senior props manager for a large opera production. Somehow I managed to do all the research and e-mail correspondence from home in small increments, resting whenever the headaches got so bad that I couldn’t continue. Again, I love my job and the responsibility didn’t scare me, but it’s pretty obvious that researching, ordering and managing more than two hundred individual items while being severely incapacitated wasn’t exactly ideal.

In early February and leading up to the divorce date, I knew I needed more help. I had been living in this beautiful, isolated flat for months now, unable to really participate in life, and I was starting to decline to the point that I couldn’t manage my own household. My mom, who had been grocery shopping for me for a while already, eventually took me home with her and I’ve been staying at my parents’ ever since.

I already talked about the lowest points in some of my other entries - I was practically bedbound, only that I was more comfortable in a recliner chair, so that’s where I stayed. I was in a lot of pain so I mostly focused on my breath and hung on to the idea that eventually, I would see a specialist and would maybe start some experimental treatment that I would have to pay for myself to see at least a little bit of an improvement. I could get up to eat with my parents or use the bathroom, and that was pretty much it for a few weeks. If I did more (and trust me, I tried), I got worse the next day.

Basically, everything I had dreaded early on about the condition was becoming my new reality - and I knew full well that in terms of symptoms, I wasn’t even at the end of the spiral. I didn’t have nerve pain and my sleep was, albeit not restorative, always relieving me of my symptoms for a few hours. Apart from being very pale because I hadn’t left the house in a few months, I probably looked okay. It couldn’t have been further from the truth. I was 33 years old and I was using the text-to-speech function on my iPhone because reading messages from friends caused me physical pain. I was using sunglasses indoors because daylight was sometimes too bright for my eyes. And I saw my heart rate increase and my HRV decrease basically every morning. My functional capacity (FUNCAP) was at 2.9 out of 6 (healthy).

In other words, my reality in February and March was grim, and I had no prospect of any improvement. And yet, I eventually did, and I’ll cover some of the turning points in the next post. So stay tuned, or whatever they say. I’ll see you around.

Limbo

Just to get that out of the way, no, I’m not talking about that kind of limbo. You know, back-breaking dance moves under a horizontal, lowered pole. The kind of stuff that accounts for about 76,8 % of spilled beer at parties.

I’m talking about limbo as in, a state of transition where everything seems a little surreal and out of place and weirdly slowed down. Not that I have any indication of what that’s actually like, but I always picture myself being on a Zero G flight I’ll never be able to afford, and the plane has just reached the upper end of the parable, putting everyone on board in the desired state of zero gravity where your hair starts sticking out and you can do somersaults in the air (unless you have to puke, which is fairly common). For a very short period of time, given the amount of money you pay for the experience, you are seemingly weightless and everything you know, including the most fundamental rule of physics we are usually subjected to, is coming to a halt. I imagine that time and space lose a little bit of their usual meaning in these moments.

So now that we have assessed how much I want to be floating in the air for 10,000 bucks (or not, I’d surely be one of the pukers), let’s return to real life where limbo states are actually pretty common - and free, yay! It’s just - we don’t usually enjoy them very much.

Let me give you an example many of you might be familiar with, depending on how you found this blog. In 2017, I had the somewhat bold idea to build my own tiny house and live in it full time. Part of that plan was to find a property to rent where I could put the house. When the house was done (or at least done enough) in 2018, I had yet to find a place to park it though. It wasn’t lack of grit or initiative on my side, it was simply hard. I’ll spare you the legal details and administrative challenges but for well over two years, I had a house on a trailer sitting in my parents’ driveway and I couldn’t put it anywhere, until we finally managed to obtain a building permit for my parents’ garden where it resides to this day.

In my experience, limbo states happen when a situation had a certain drive behind it, like personal action or a dynamic that’s outside of your control, just like the plane burning up a ridiculous amount of fuel to shoot vertically into the air. And then, all of a sudden, you take the drive or the dominating factor away. The plane just floats. And for at least a brief moment, you’re like ‘Oh-oh’.

I continued building my house well into 2019 but the uncertainty concerning my parking spot and living in an unfinished building with no water connection for an additional two years has since become my definition of limbo. You want things to go somewhere, but for reasons sometimes outside of your control, they just won’t. And because you can’t simply walk away from many things, whether it’s a house you built or a flight you’re on, you are stuck. You will feel uncertain about the future, maybe anxious. You feel thrown. And you will certainly question your life choices (like building a tiny house for 35,000 bucks instead of spending the money on three Zero G flights).

A lot of people would probably cite Covid times as one of their most intense limbo experiences, where some of us couldn’t even work their jobs, with no timeline when we were ever allowed to return to it. It can be intense.

Knowing a little bit about psychology (fourth-semester here), I had a gut feeling that limbo states were back on the menu for me as I slowly worked my way towards recovery from ME/CFS. As with any severe illness, particularly if it’s chronic, you eventually get to a place where in order to cope with pain and loss of function, you have to let go of any expectation on yourself, whether it’s coming from you or from someone else. You can’t live up to anything if you’re mostly stuck in a recliner chair with a sleeping mask on. Little by little, as my condition was progressing, I dropped out of regular activities, jobs and meetings with friends, until about the only expectation I had was to deal with my level of functionality in the most positive way possible. In the worst weeks, I could eat sitting upright and go to the bathroom and talk a few words with my parents, and that took up all my energy.

I’ll talk about my approach to recovery in a different post, but basically, when things slowly started to get better, I knew that I would eventually land in limbo land for a while. My most severe sick days are over. My initial belief that my illness was at least partially a strictly structural or physical disease that I didn’t have control over has been challenged. I am hopeful that I can make a full recovery with the tools I now have.

But, and this is a common experience in many different forms of recovery, this shift also comes with a feeling of displacement. I am not consumed by being sick anymore, but I am far from being well. I sometimes have enough energy to participate in parts of life again - and that builds expectations, externally and internally, that I can’t yet fulfill (and maybe never want to fulfill again?). I have no timeline for my recovery, so I can’t make any plans. I take it day by day, still reeling from my experiences just a while ago. In short, I’m still hit by the past but can’t move on to the future yet. The present feels shaky, timeless. Building trust in my body is a crucial part of my recovery but even so, you can’t help but fear relapses sometimes.

I don’t know what my life will look like when I have recovered, and I can only really start building it for good when I am recovered, so where does that put me right now?

In a place of tremendous fear, to be honest. And I know why. Imagine going through an intense phase where all your focus and energy is needed just to make it through. Like climbing a ladder on the outside of a very tall industrial building. One foot after the other, you have a certain rhythm that keeps you going. And then, suddenly, you’re on top - and you bet that the first thing you do is to look down and get scared af about what you just did. That’s okay. If you expect it to happen, it’s actually much less terrifying. I feel like one of the most important things is to acknowledge that limbo states are almost inevitable at certain stages of life and that they are not a sign that things fall apart even more - even if it feels like it.

Feeling uncertain, overwhelmed or out of place when in transition doesn’t mean you have to follow every fatalistic doomsday prediction your brain will come up with, though. It’s scary to see things change just as it’s scary to be stuck but your plane is not going to crash and you’re not going to fall from the building. It’s normal for fear to come up when it finally has a chance - when so far you were too busy to survive to even go there.

I learned from my experience with my house. Waiting, as I did back then, is not the answer because it creates tension and puts you in a passive state. One thing I definitely don’t need is more freeze responses in my nervous system. Instead, I deal with the fear through somatic tracking and other methods. Trust me, ignoring the fear as you stare down thirty feet of empty wall space is not going to make you less afraid of heights, and insulting yourself for being afraid in the first place doesn’t do the trick either. Gradual exposure can help, though, and knowing that whatever the phase, it’s not permanent.

I’ve also come to appreciate the limbo state simply for the chance to take a breath. After an intense and steep ascend, the plane is now sitting weightlessly in the air for a few moments (or you’re panting from all the ladder-climbing), and although you don’t really know what the second half of the parable will feel like (or whatever the heck you’re doing on top of an industrial building), you kinda have a feeling that it will be a hell of a ride. So why not take a moment to honor your experiences, maybe sort your shit out, face your fear, do a few dance moves - under a pole, if you must - and shout ‘Here goes nothing!’ before you continue on your journey.

Enjoy your flight, everyone. You paid a lot to be here.

The pattern-seeking machine

Let me take you back a few years. Quite a few years, to be precise. In 2007, I was in 9th grade and I wasn’t exactly what you’d call popular. Neither did I have any intention of being ‘popular’ - but I certainly wasn’t calling for the estrangement and bewildered looks I got either.

So we were enjoying German class. That is, I was. Most others in the room were more or less waiting for it to be over. Our teacher presented us with a poem. No further comment, she just read it out loud, let it linger in the air and asked, ‘What’s the first thing that comes to mind when you hear this?’

My hand shot up, as always. And as always, she waited a few moments to see if anyone else was participating (a futile attempt that year, most of the time). Finally, she nodded at me. ‘So what was the first thing you noticed?’ And I said, without hesitation: ‘The meter is regular.’

Silence. And then, roaring laughter, somewhere between incredibility and dismissal. Even my teacher laughed - but in her defense, she smiled at me and I knew it came from a place of respect. ‘That’s the first thing you notice?’, someone asked from the back.

Yup. Can’t help myself.

My brain has been a pattern-seeking machine ever since I can remember. In an attempt to categorize an overwhelming world, especially for a neurodivergent child, I used my IQ to find matches and correlations and other logical connections between things all day long. I knew on which step of the staircase my dad usually coughed when going downstairs. I could tell by the sounds of passing trains outside whether it was 1.08 pm or 1.21 pm (there are two at 1.21 pm and from different directions). And by the age of 15, I was first hired to proofread academic texts before publication because I was able to reliably detect double blanks in printed paperwork.

I love when things make sense. And since surprises are kind of an ambivalent thing for me, I also love being able to predict what’s happening. Especially in the realm of great unpredictability - human interaction.

Well, actually, human interaction isn’t that unpredictable, not even in extreme forms like violence (read Gavin de Becker). But it was hard for me to figure it out when I was young and unspoken social rules didn’t come intuitively to me. I remember the looks I got when I was playing cards with a few kids on a vacation and I helped myself to a second biscuit - as it turned out, it had been the last one and no one else had had more than one. I was vaguely aware of that but I hadn’t understood until that moment that this meant I wasn’t supposed to just take the final one. My parents had certainly raised me to be compassionate and forthcoming and I was definitely picking up on that but alas, the world continued to be confusing. All these expectations.

Finding patterns in people’s behavior, in license plates and price tags (I recently figured out which specific number on these printed labels from the butcher’s counter indicate how many customers the store has had that day) will be a live-long endeavor and helps a great deal when you’re very sick and unable to entertain any other distraction. It makes the world more manageable and turns everything into a real-life scientific study.

But as we all know, every study has its flaws. The patterns we see might just be the patterns we always saw, the patterns we want to see - or no patterns at all. And the confidence of your predictions, whether it’s about the number of cars you’re going to encounter on a familiar stretch of road, the response of a loved one to something you say or the amount of pain you will be in two hours from now - this confidence is heavily influenced by the accuracy of your past predictions, especially the high-stakes ones.

As of late, with the divorce and several other personal relationships falling apart, I realize I lost quite a bit of my confidence in my ability to categorize human behavior and to deduct accurate predictions from it. If asked again, I might even question whether that poem’s meter is actually one hundred percent regular. (I’m sure it was.)

There are many more tools I rely on these days to make sense of the world and navigate my own journey, not just pattern-seeking, but it’s still very important for me and I’m sharing this because beneath the obvious impact, drastic life changes and chronic illness also often influence our general ability to make sense of the world, which has vast consequences. Somehow, instinctively, we assume that we must have been fundamentally wrong about many things if we ended up in this painful place.

Well, at least that much can be said with confidence, deducted from patterns I’ve observed for a long time: Everyone can (and most will) end up in a very painful place at least once in their lives. And everyone’s predictions are flawed to an extent. While we don’t have to adopt the idea that we brought all this misery onto ourselves (a rather problematic thing to say, depending on the circumstances), we can still take the opportunity to overhaul our machines, you know, some oil, some tightening of screws, that kind of stuff. It doesn’t hurt to ask, ‘Maybe not all of the patterns I detected were accurate, were they?’

But just because our lives seem to fall apart all of a sudden, that doesn’t mean that every prediction, every network of logical connections we formed in our head (I often picture mine as neural networks or trees) was incorrect. I’m reminding myself that I haven’t been hit by any of the cars whose speed I calculated before crossing the street. I somehow made it through adulthood so far without breaking any major laws (I hope) or starting fist fights with people (I hate fist fights), despite the fact that I sometimes seem to read people ‘wrong’.

My pattern-seeking machine might be off sometimes, but not that far off. It might have led me into treacherous social waters sometimes, but it also guided me in making art, form long-lasting friendships and take care of myself when I realized I really needed to. I think it’s just time for an upgrade and I’m working on that now. And with time, I might be able to regain the confidence I had when I was 15 and all that mattered was a regular meter in a poem from a few hundred years ago.

Tabula Rasa

Here I am. 33 years old, recently divorced and severely sick back home with my parents. Within the last few months I‘ve lost the ability to do my work, both on YouTube and in props, to live by myself and run my own errands and ultimately, to socialise meaningfully with anyone.

This is not the entry where I explain about ME/CFS or what else led me here. The time for that will come. Right now, in this moment, I keep thinking of this term. Tabula rasa. I have a rather useless degree in classics so I can explain to you where it comes from - it describes a wax tablet often used by students in the old, old Roman days that, after being written on, is then wiped smooth to make space for the next exercise, thereby erasing what was before and starting with a blank slate.

Except that‘s not entirely true. As is the nature of a wax tablet, you‘re only redistributing matter. Everything is still there, it‘s just going to take a new shape in the next round.

And that‘s what I‘m trying to do. Not that long ago, I had a life; I had hobbies and (multiple) jobs and friends and a marriage and countless random experiences. Me getting sick has been the wiping process - all meaningful bumps in my inner landscape reduced to a flat line, to the point where earlier this year many days consisted mainly of lying down with my eyes closed and without any distractions, because that‘s the only thing I could stand.

And now, there is nothing. To redistribute and draw new lines and form new words, I need energy, and it‘s not coming back quickly. I‘m no longer in the business of wearing a sleep mask all day but I am also still housebound most of the time. These have been the toughest months of my life.

Since I can not currently share all of this on YouTube, as I normally would, and since these times command changes anyway, I‘m now, and with a pain-ridden grin in my face, returning to something I have loved forever and had to abandon a bit for a while for various reasons: writing.

I‘ll turn this new space here into my journal, detailing my recovery (I‘m optimistic) and probably many more things along the way. I can‘t do much right now, but this I can do and it brings me some of the much needed joy that keeps me going. May this, if nothing else, entertain you for a few minutes. I‘ll see you in the next one.