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.