Know Yourself

Approximately three months have passed since my first post about my health condition.

Right now I feel is a good time to write an update. The last three months really haven't been easy for me, since my condition did not improve. However, I have learned a lot about myself that I'd like to share here. In fact, I think that I've made a real leap forward on understanding the true nature of myself (yes, that may sound weird to you but its just fitting for me). This process involved therapy (CBT) and a few other important moments that I could experience thanks to my friends (<3!)

Who Am I

As mentioned before, there were some pivotal moments in the last few months that showed me what the "building blocks" of my character are:

I am, by nature, a very active and creative person. I often daydream about my projects and can't wait for the time I'm at my desk, listening to "Cynicism" by Dimi Angélis, programming and hacking stuff again. To compensate the sitting around, I loved to go running, preferably as fast as I can, wet from rain and sweat, into the night, blasting "Rave Mood" by Remco Beekwilder. I like talking to people with weird niche interests and generally enjoy spending time with people who are on the same page as me. Recently, I've discovered my love for making music with modular synths inside Rack 2 and despite already having a lot of side projects I love working on, I often times try to fit in time just to play with the vast opportunities of modular and explore its wonderful sound spaces. I admire the passion of Tom 7's videos and wish every day of my life could be filled with such energy.

Of course, I more or less knew this already, but in a few social situations, it just really became apparent to me! Through my girlfriend I learned, that other people spend their evenings by just doing nothing and chilling out, maybe listening to some music. Other people go on a hike and think about nothing, or maybe about what they'll eat later - and that's beautiful.

I am not like that, but I need to be more like that, sadly.

Every Day Is a Battle

Since my last post, I also gained a lot of knowledge about my condition. I've been able to observe myself from an outside perspective more often, through the eyes of my therapist and my friends and see more of a full picture now, which helps with managing all of this. There have been some additional diagnosis by my neurologist, therapist and GI doc. I won't go into the details, but here is a short form:

Due to physical and mental stress, being naturally sensitive to sound while sleeping, and taking antiboitics at that time, the two covid infections and maybe also the MRNA vaccine I got just broke an already fragile construct. Sleep and GI problems very quickly arose and I basically followed a very wrong approach to managing a) the recovery of a viral infection (covid) and b) stress. I completely ignored rest and just pushed through, because I wanted to. I had so much to share and do. University, work, free time CTF with FluxFingers, personal projects, training Taekwondo. During CBT, me and my therapist talked a bit about my intentions for working so hard and wanting to "achieve" this much. I still don't know exactly, but I suspect a mixture of social validation and peak interests caused me to ignore resting. As it got worse, I was falsely diagnosed with sleep apnea, which may have been one of the worst things to happen. For almost a year, I needed to wear a CPAP mask during sleep, which I hated. It really left a mark on my relationship with sleep (Additionally, developing the "I can't sleep so I can rave" mindset might also have caused some damage :$).

What I'm left with today is a dysregulated nervous system (something most long COVID patients struggle with), gut disbyosis in the form of SIBO and Leaky Gut and everything that comes with it :) Namely chronic stress, trouble sleeping, chronic fatigue, headaches and brain fog. Oh and I developed chronic rhinitis, which I was able to "cure" by cutting out histamine completely from my diet.

To manage my symptoms, I'm following a strict low FODMAP, low histamine diet, intermitted 16/8 fasting, and practice mindfulness and meditation, which help with managing the chronic stress. Most importantly, I've managed to convince my doctor to prescribe me Low Dose Naltrexone, which is the first targeted long COVID treatment I'll be starting in the coming months. CBT has also been helpful and I plan to visit my therapist more frequently. Additionally, my friends played and still play a very important role in managing my mental health. Behavioral interventions became a much bigger topic in the near past and I'll dedicate a whole section for them after this one. So, everyone has been tired once, but constant fatigue and brain fog are just different. Let me give you an example:

I wake up in the morning, feeling like I've partied half of the night. I yawningly hop under the shower without really processing what I'm doing. I constantly forget where I put things, loose thoughts in my head and are quite clumsy, all while the stress is coming up - because I have stuff to do, and I wanna do it so bad! Often, the stress manifests in constant unrest and adrenaline rushes, which are hot sensations that you feel running through your body, beginning in the head and are accompanied by sweat. Sometimes I chug down a coffee before starting work. By the time afternoon rolls around, I have to take a nap. I meditate to calm down and if I'm lucky there are no disturbing things like "loud" neighbours (talking, moving stuff) or heavy headaches, I manage to enter a sleep like state for 20 minutes. In the best case I wake up tired but with a bit more mental energy. You see, even sitting in front of my computer is a challenging task since mental works also exhausts me very quickly. When evening comes around, the fatigue and brain fog often clear a bit (this is a well known phenomenon and nobody knows why exactly this occurs) and naturally I move to my computer to do stuff. At this point I'd like to mention that "doing stuff" nowadays also contains googling success stories of long covid, looking for new treatments, trying to understand my symptoms on a deeper, chemical level and skimming over research papers that are way over my level of understanding (:c) about treating the conditions I suffer from. Then I fall into bed, exhausted but completely wired. My brain is really active, thinking either about my projects, possible treatments or - at worst - worrying about my future, if I'll ever be healthy again and if I'll be able to earn enoguh money to exist on my own.

Behavioral Interventions

In the last 1 1/2 months, behavioral methods of managing my symptoms became a much greater part of my life, thanks to watching Leonie's recovery from long COVID (German video), which really resonated with me, since I share a lot of her symptoms, especially on the mental and stress side. So my main goal is to calm my autonomous nervous system as much as possible to get it into a parasympathetic state - one which has long been a very rare state in my case. As mentioned a above, I practice mindfulness, meditation, and plan for pauses more often. For example, as I've mentioned above, my girlfriend recently told me about "chill" evenings and I tried to implement this into my life. Approximately 1 hour before going to bed, I'll stop researching and working and try to fully concentrate on just relaxing. For you, this may sound silly, but it was a real challenge for me at first! I just couldn't sit there and do (almost) nothing! But then came the evening it worked. And it just fucking hit me. I somehow managed to just lie on my bed and listen to music without thinking too much, which was a wonderful feeling! Nowadays, I try to do this as often as I can. One very cool result of this is, that I can partly enjoy games again for about 30 minutes to an hour, depending on the their mental demand. In the past, really enjoying games wasn't possible because a) I was thinking I'm wasting my time because I could work or research my illness instead and b) they would drain my energy super quickly (especially fast paced games [BF4 I still <3 you!]). So this is a slight improvement and I'm proud to be able to enjoy my evenings a bit more, although it often happens that I'm just to exhausted for anything, which is most of the time accompanied by headaches. The last thing I'd like to touch on are friends and family: It sometimes feels like I am alone with my condition (despite joining online communities such as r/longcovidhaulers, which can be really horrible [its a two edged sword of hope and despair, visit at your own risk!]) because it is hard for people to understand what brain fog and fatigue really feel like and from the outside, you can look quite normal, especially when ignoring physical fatigue. This is why I started to tell my close friends more about my situation. The thought of having people on your side that support you helps me tremendously. If you feel that you are annoying to people, you probably aren't. Good friends will be there for you. Learning to accept that fact and the ability to communicate ones need for support has helped me, as well as letting other people support me with everyday things such as moving heavy stuff around or the tedious job of finding good doctors.

Working Against My natural self

You'd think that, because these things are so good for me, I can do them with ease, but that's not the case. In fact, implementing these things into my life is my daily struggle. I find myself often wanting to achieve more than I can, not doing pauses, still thinking about getting healthy again, and getting compulsive over multi tasking (which is especially draining) and over-researching stuff. I often times don't even want to sleep (I do 20 minute naps which can be quite effective) in the afternoon. I tend succeed more often than in the past, but most of the days its still very hard.

In essence, there is a fundamental mismatch between how I should and want to behave. As you can imagine, after 2 years, this hasn't made me depressed per se, but my life certainly has lost a lot of color.

But I want to end this on a positive note! I know I'm gonna be healthy again some day, and until that day I'll fight - even if that means actually "fighting" less. I have started blogging on YouTube, mostly for myself, because talking to a camera offers a different level of satisfaction for me and I like the progression as I can look back on each video. You can find my channel here. I'm actually very proud to be able to speak openly about this stuff and with this new understanding of myself, a bit of hope has returned!

Oh, and as mentioned before, I still work on my side project 😈 Expect a cool technical blog post about neural networks and cellular automata soon™ ;)

I'd love to hear from you

In a similar situation? Thoughts or advice? I'd love to hear from you! Feel free to contact me

Anyways. I wish you the best of health and a beautiful day - stay curious!