Time flies when you’re having fun they say, well it also goes fast even when you don’t have fun. I’ve noticed already months back that it has been a long time since I wrote something on my blog. This does not mean that I had abanonded the blog, on the contrary. The fact is much simpler, as you might have read, I have caught Covid for the third time June ’22 and had a bigger long covid setback than the first two. In this blog I’ll try to highlight a few big things that happened in my life over the past 18 months and what my new situation and new goals have become.
June - Sep 2022
First of all, my third covid infection was heavy. Fortunately I wasn’t hospitalized though I did get the maximum home-care possible. After that initial infection my energy level was drained so much that my occupational therapist (which learned me about energy management and recovery process) told me I had two choices for the day: take a shower or drink coffee with my wife, nothing more. I was bedridden and have come from afar.
It also meant I had a lot of thinking time, and that can be a good thing or a bad thing. I came to the conclusion that my asthma instability and long covid kept each other stuck with me in between. What I mean is that both chronic diseases take time and recovery is slow. But as soon as I improved a bit from the one, the other could act up (like a new covid infection or an asthma attack), setting me multiple steps back. Effectively since nov 2019, healthwise I had been in a negative spiral. And well, I didnt want to go unemployed. So if long covid and asthma somehow are intertwined, what if I’d remove most of my possible asthma triggers (go to the mountains), would my body start to heal a bit faster? As a kid I qualified once to go to the asthma center in Davos, and back then it wasn’t for 8 weeks but much longer. Mountains always do me good. So I reached out to them and they answerd back positively and to talk with my pulmonologist about it.
And that is exactly what I did..
Dec 2022 - Feb 2023
Fast forward to early Dec 2022. After some anxious waiting and going through screening I was allowed to go to the Dutch Asthma Center in Davos. As my condition was so bad (I could barely walk 100 meters with the dog), Renate, Eva brought me to Davos by car, with a weekend in South Germany as a stopover, so I could recover from the trip. I was hospitalized for 8 weeks to learn more about my asthma and work on how to cope with that while also rebuilding my physical condition. And I can tell you, I learned a lot, made new friends, and my condition improved dramatically.
The week before I was discharged, I walked a mountain trail up of 2.5 km’s (steep climb) , twice 6.7 km on the road (walked from the clinic to Sertig on one day and two days later I walked the same route in reverse). I could even go to a mountain to walk with snow shoes, all on my own (using public transport and coping with all kind of sensory inputs).
To top that off, I was able to go back home by train by my own.
So you can imagine that I was very positive on the results and had a good mood when I got back home to go for a full recovery…
Feb - July 2023
Sadly things didnt go as fast as I hoped. I learned a lot so I could cope with my asthma attacks better, but I had multiple of them, including the required prednisol treatments, with different causes. The weather was giving me problems too (it has become a trigger for me), with having one of the wettest springs ever and of the driest and warmest june (smog) ever. All in all, I was moving quickly towards a prednisol treatment as maintenance (and that’s something you do not want).
Workwise I was able to make steps in recovery, going from a few hours a week before the revalidation to being able to work almost completely with enough rest in between work things (and what I said back then was that I was able to work my hours but spread on a 7-day week instead of a 5-day workweek).
Half june I had another session with my pulmonologist and we decided to try a biological before going into maintenance prednisolon. It was my last straw and I was very anxious about it.
Aug - Dec 2023
I received my first biological in august, after a summer break that helped me but was also cut short because the last campsite allowed for open fires and triggered my asthma. I was very nervous for possible reactions and if it would help. That fear was ungrounded. It helped big time! I was able to do much more 3 weeks of the 4. (The biological means I need to get 3 shots every 4 weeks). The last week is a bit less, but still better than without.
It allowed me to get back to work completely and prevent getting into permanent disability. It even helped me to increase my work hours at my employee. Cause that is a decision I also had to make (and thought of for a long time). I am now working full time for the Dutch Government and I still have my consultancy company, but at a much lower level and only for consultancy and training. I cannot do projects anymore, my health prevents me from being “reliable”.
So I had to make some complex decisions. And things were moving.
Based on my long covid experiences, with energy management, great understanding from my employer I was able to work, but to be honest. I still wasn’t able to cycle or sport that much. I went to Austria for a walk-work break, which ended up in more work than walk. I did walk though, and I did meet up with my good friend Liam Keegan and his family who was visiting Southern Germany during autumn break.
But I did run a fever after driving back home, typical long covid response. So I came to the conclusion (with professional support) that I was able to work but with limits and physical exercise was very very limited. I was afraid to go on the bicycle, because the setbacks were so big.
Jan - July 2024
Early january Amsterdam UMC came with a scientific finding that all long covid patients needed longer recovery times and that their mitochrondia were not functioning properly. Sadly I only found genetic diseases besides long covid, so I had a mindset of this is it.
During this period I tried working and hobbies and continuously trying to balance (which became frustrating cause I had been doing it for a long time) my energy over work, personal time, family time and hobbies. And to be honest, I wasn’t good at it. Most of it has gone to work and oversteppning myself in lieu of something important in that moment was not good. I had less attacks, but as my pulmonologist said so beautifully: not stable but better quality of life between the attacks. And that is the best statement I think can be given cause in July Eva caught Covid while we were on a campsite (just before our family summer break). I didnt test positive but I did have a very heavy asthma attack and required yet another prednisol treatment.
Where I am & Goals
As you now know, a lot has happened and I just didnt find the right moments to write. And to be honest, I was also scared to write cause writing takes a lot of energy and I wasn’t even sure if I could ever write again (cause I also forgot to mention I had a second book contract from CiscoPress but sadly had to return the proposal). Over the past weeks I have been reading up again and evaluating my life. Kind a what happens with me on a family holiday too (and when you read a translation of this article). It gives me time to reflect.
So where do I stand? That is a tough question to answer cause it changes by the day. PEM is real and even while I’ve become very aware of my energy and try to feel my limits, PEM plays tricks on me with a sudden higher heart rate the next day while I didn’t even feel I was close to a boundary. So it’s dynamic and can even change during the day. That is basically living with long covid, I can wake up feeling really well rested and when I hit the shower, it’s like this will be an off-day. Or it starts great and when something happens (often unexpected or just out of the blue) I get very tired. It really means living in the moment and effectively plan everything with a big pencil so I can cancel at a moment’s notice. Coping with that is tough. When I compare with pre-covid, I’d say that on a good day I’m at 50-60% of my old me, on bad days it’s more 20-40%. I am able to work with some adjustments and support, including enough breaks in-between meetings. But even then I must not drive myself to work and back home, that is too much.
It also means I have come to the conclusion that my life turned upside down due to (long) covid and I will never be able to return to what I could do before Covid. I now have two chronic dynamic disabilities, Long Covid with the infamous notorious post-exertial malaise and Severe asthma (which is what I also had as a child, in retrospect).
It means I will need to continuously balance my energy, make choices in where I spend my energy on and where I find energy from. It is a daily battle that the article so clearly explains, where I also need to decide on when I cook and what I will not do on a day I will cook.
It also means I will not be able to walk long distances and need a wheelchair or scooter (which I already did for flights). I now have a hidden sunflower card and hope to get a disability parking card (cause without it , I am unable to do any activities because walking will take too much of my energy).
Regarding my blogs and doing things networking and tech, it is not something I want to give up at all. My work is still in IT and I love what I do, it’s just I have to accept that my output is at 40-60% of what it used to be. So also for my blog, I do want to write and I do want to remain active in the neteng community, within the limits that I now have. So I made a plan to dedicate 4 hours a week to writing, whether it’s a blog , podcast or anything else. I also want to share my experiences in what helped me in coping with Long Covid. I hope that this structure will help me in picking up putting things online, not only tech but also long covid related. Cause there is enough I have learned that might help others.
I really really hope I will be able to go to a CiscoLive or TechField Day event somewhere in the future, but it won’t be as intense as before.
And it also means I have not given up, not on this blog, the community or life itself. This is another thing that life has thrown at me and I will deal with it the best way I can.
And that means finding the right balance between work, blogging, learning new things, and all my other hobbies. And accepting that if one of them doesnt go the way I wanted, than so be it (and that is bloody difficult to learn and accept).
2 Responses
I hope you will get better, Pieter-Jan!
Thank you Petru. Sadly my expectations, based on the current known research, is that this won’t happen. I do hope to find more balance and thus stabilize end improve a bit due to that balance.
I plan to post more on the balance act and what research i find is helping me