I’ve had long covid for 15 months now. It sucks, and for the first time in my life, I feel weak. Below, I’ll explain:
1. Who I was before covid
2. How covid has impacted me
3. How to treat long covid
I hope this post will help others who are in a similar situation.
1. WHO I WAS BEFORE COVID
For as long as I can remember, I’ve been an intense guy with lots of energy. For example, I was so obsessed with a football club named Blackburn Rovers that I became the chairman of the Scandinavian Supporters Club and went to study at the University of Manchester so that I could watch all their games; 100+ in three years.
I used the same intensity when studying, winning a prize for the best student in 2004 by outworking the others. At BearingPoint Norway, a management consultancy in Oslo, I got a joke-like award at the Christmas party: “And here’s a toast to Bjarte, our very own Duracell Bunny!”.
From 2015-2022, I put my energy into building a purpose-driven health tech startup in Stockholm. We made $8.6M in annual recurring revenue and had a team of about 60 people before we raised any money. I commuted from Bergen, typically working from 06:30 to 21:00 there.
It was intense at home too with two young daughters running around and me trying, unsuccessfully, to make up for the lost time.
2. HOW COVID HAS IMPACTED ME
Covid strikes
In August 2022, I left the startup and sold some of my shares to focus on family. I also began running more seriously, 10k a day. But in November 2022, things changed. A few days after I smashed my 5k run record I tested positive for covid. I had a fever, low energy, and couldn’t smell or taste anything. I popped paracetamol and ibuprofen and went about my business, though I did less around the house and stopped training. It took a month before I recovered.
As soon as I felt ok, I took up my family responsibilities and started running again. But even though I was no longer sick, something felt off. My intensity was gone. I had to lie down for hours after training. I didn’t get any faster. And I would be sluggish the whole day and only feel like myself late in the evenings. I concluded I hadn’t fully recovered and stopped running.
From bad to worse
But the symptoms worsened. I began struggling to remember what I had had for breakfast only hours earlier. I started forgetting common words like orange and people’s names. And I would forget what I was talking about in the middle of a conversation. It felt like my brain was operating at 10% of capacity.
The longer this went on, the more I lost myself, my energy, and my happiness. I’ve always been a guy who smiles and jokes a lot. Not anymore. Instead, I found myself looking down whenever I was out shopping for groceries as I couldn’t bear talking to anyone.
No treatment, no life
Late February 2023, about 100 days after I got sick, I went to see the doctor. I took all the normal blood tests and then some. Perfect results. Nothing could explain my symptoms. But my doctor had seen these symptoms before and said “You probably have long covid”. “How do I fix this?” I asked. “There is no treatment, you have to wait it out. Come back in a month, and then we’ll see how things are. But don’t exercise and try to rest”.
So that’s what I tried to do. I spent most of my time in a separate bedroom, alone, in bed. I could no longer get the kids ready for kindergarten and school in the mornings. During the day I would lay on the sofa or bed trying to get the time to pass by. I didn’t have the energy to read, listen to podcasts, or do something around the house.
Some days, particularly after having a cup of coffee, I would have a spark of energy! I’d set up a call with a few startup founders or meet some people in Bergen. But when the time came for the meeting, I would regret booking it and feel exhausted afterward.
The evenings sucked as much as the days. My wife and children would come home which was great, but after ten minutes with them, I‘d have to rest, and I would barely see them before kissing them goodnight. My wife had to do all the work – school prep, grocery shopping, dinners, cleaning, putting the kids to bed, etc.
I felt weak and like a burden. I was not taking care of my family. I was not working. And I did nothing around the house. Instead, my wife now had an extra “child” to manage on top of all her other responsibilities.
Hello darkness my new friend
Months passed with no improvement. The answer from the doctor was the same – “There’s no treatment, you have to be patient.”.
I was able to get in touch with a few other people who had been diagnosed with long covid. Their stories shocked me. One was a lovely woman about my age who had still not recovered after more than two years of long covid. Another was a man who’d been sick for 18 months and hadn’t recovered either. Most of them had become depressed and were on antidepressants for the first time in their lives. There were lots of these stories.
I think the reason I didn’t feel depressed is that I’m able to not think and just move forward when I need to. Yet, during our summer vacation in Tønsberg in July 2023, I started having feelings that were completely new to me. I didn’t feel like being around my own family. I withdrew more and more to my room and started feeling sorry for myself. In one way I wanted my wife to come and care for me, while at the same time, I didn’t want to have anyone around me.
My mind was full of negative thoughts. “Will I ever be able to play with my kids again? To run, play tennis, or hike a mountain? To spend quality time with my wife and do my part for the family? Living like this is no life at all.”. For the first time in my life, I felt I could understand people who suffer from depression.
Thankfully, I knew that I could, at any moment, decide to turn these thoughts off. All I had to do was not to feed the negativity, and I know how to do that. But for some days during that summer, I wanted to think and feel sorry for myself. One evening I decided enough was enough. I stopped feeding the negativity and the darkness went away as fast as it had arrived.
The return of my mind
There was more good news on the way. At the end of July, my brain started working again! The change started in June and gradually improved from there. I forgot fewer and fewer words, was able to have normal conversations, and my memory improved. Exciting!
Unfortunately, long covid is a fickle animal. Some days you feel almost normal. You have energy, start making plans, have meetings, go for a walk, and feel like yes!, I’m getting better! But then the next day, or even later that same day, you’re back in bed, not even able to read or watch a movie. It would be October 2023 before I understood why that was.
Bad, OK, Good
From August to October, nothing changed. My mind had recovered and now my only remaining problem was having zero energy. My stepdad asked me how this felt. “It’s pretty simple. Do you remember the last time you had a fever? I feel similar to that. There’s no fever or body ache, but walking the stairs is tough. You have no desire to do anything and you want the time to pass as quickly as possible until you feel better. There’s lots of negativity in your mind and you have to remind yourself that this is the disease talking – the thoughts are not reality.”
During the autumn I started to make more detailed notes about how I felt day to day, dividing each day into three categories: Bad, OK, and Good. Most days were bad (meaning it feels like having a fever as described above), some were ok (feels more like a hangover without the headache – you can do some things but it’s hard and you don’t want to), and a few were good (I feel normal, I smile, I want to read, be productive, be with people, etc.).
This variety was frustrating as I didn’t understand what caused it. For example, in September and October, I had several good days and I started thinking I was getting healthy again. I met people in the startup world to figure out what my next things should be, exciting! But after a few weeks of hope, I would feel bad again for no apparent reason. I was stuck.
Monthly visits to the doctor
It had now been almost one year since I got sick. Still, the doctor and medical community offered no help. Given my startup experience, building a company that helps people get rid of type 2 diabetes and obesity, I knew that doctors are pretty useless when it comes to chronic disease. But it was still fascinating to experience this personally.
I’d go to the doctor once a month and he was 15-30 minutes late every single time. I got nothing out of it. Each visit I asked: “How can I recover faster”? Do you know anyone who treats long covid successfully and can you connect me? Can you connect me with anyone else who has the disease or has recovered from it so that I can learn from them?”. The answer was always the same, “No”, though he did refer me to a clinic in Bergen that never answered the request.
I don’t blame the doctor or the system. Long covid is new and the medical community doesn’t know much about how to treat it. But it was a good personal experience of what I’ve always told everyone around me:
Don’t trust the doctor to keep you healthy. That’s your job.
3. HOW TO TREAT LONG COVID
A physio to the rescue
One of the other people with long covid recommended a physiotherapist to me. She told me the person was extremely busy and didn’t accept more clients, but I asked for the number anyway.
Her name made me curious, Marianne Svanevik (@MSvanevik). At BearingPoint, I worked with a guy named Svanevik and he was one of my favorite people there. Could they be related? I called her, briefly introduced myself, and asked if she was related to my former colleague. “Yes, he’s my son!”.
Marianne radiated energy and asked me to write a brief email explaining my situation. She said she couldn’t take on more clients now, but that she maaaay consider making an exception. I wrote to her the same day. She answered quickly and asked me to come to her clinic towards the end of October to evaluate my situation.
I did and had a bad day when I met her. It was hard to communicate and I knew I should be in bed. Still, I pushed myself and answered all her questions. Finally, she said “Ok, I’ll take you on. Society needs people like you to be healthy! I promise you, we are going to fix this. I’ve worked with these kinds of problems for 30 years, and look at that wall”, she pointed to a huge blackboard on one side of her office. A set of stairs was drawn on it, full of names and dates. “Here are people I have helped climb the stairs of recovery. Your name will be on there too.”
The treatment plan, step 1
Marianne’s confidence was infectious. She had helped cure her daughter and countless patients from ME, and in the last few years she had used a similar method to help long covid patients recover.
“People who struggle with these types of diseases do one of two things: Either they spend too much energy whenever they feel good so that they overextend themselves and don’t get better – one step forward, one step back. Or they rest too much so that the body doesn’t get the stimuli it needs to become better. You, Bjarte, are in the first category, typical of impatient people who want to get better as fast as possible. You need to learn how to conserve energy, and that’s what we are going to achieve with step 1 of the treatment plan. I don’t know how long that will take, but once you start having fewer and fewer bad days and more and more good ones you are on the right track.“
“What’s the second part of the plan?”, I said. “Let’s not worry about that now”. We’ll get to that when we’ve completed step 1. Now, let’s write down your actions for the next three weeks.”
Goal: Predictability.
When step 1 of the plan is completed you’ll no longer feel confused. You’ll know why you have bad, ok, and good days because you’ll understand how your actions impact how you feel. At the end of this step, you’ll have fewer bad and ok days and many good ones.
Daily plan:
1. Do whatever it takes to get 8 hours of quality sleep.
2. Do nothing for two hours after waking up. Stay in bed. Feel free to use technology as long as you don’t stress and it’s not effortful.
3. Eat breakfast, nice and slow.
4. Go for a short walk, 10-15 minutes maximum, no hills.
5. Rest actively for at least 15 minutes, for example by meditation or other relaxation techniques.
6. Stay at home. Once the kids come home, feel free to play with them for a few minutes, but be careful, and quickly go back into your room to relax.
7. Avoid traveling.
8. Feel free to drink a glass of wine in the evening if you like that.
“Ok, off you go Bjarte! Together we are going to fix this, I promise you. See you in three weeks!”.
Executing the plan – incredibly boring
Marianne’s plan might be effective but it was hard to implement. Before meeting her, I would still do a few things here and there, like prepare and deliver my kids in the morning, pick them up, go grocery shopping, do other errands, go for longer walks, meet people in the startup world, etc. With this new plan, I wasn’t allowed to do any of that. My life became, if possible, even more boring. The days felt like a repetitive cycle of nothing, laying in my room watching TV, wasting time.
For many people, having so much free time to relax may be a dream, but for me it was hell. Therefore, I cheated here and there and didn’t execute the plan well enough. For example, I would sometimes drive my wife to work, play too much with the kids, take a meeting, do grocery shopping, etc.
After doing this for three weeks, I felt a little better but far from great. Marianne and I agreed that I needed to execute better and we discussed taking a bold move.
Be alone and execute perfectly
I had earlier told Marianne that I’d do anything to get healthy. The reason I hadn’t executed the plan 100% wasn’t because I was lazy, but because I didn’t understand just how important it was to execute every part of it perfectly and consistently. For example, if I drove my wife to work one morning, that would ruin the whole improvement for that day Marianne explained. I understood and agreed to do better.
“This may not be possible, but if you could get a few weeks for yourself, preferably in a warmer climate, that could speed up your recovery significantly. Like altitude training for athletes in a way. Do you think you’d be able to do something like that?”
My wife was supportive and a few days later, in mid-November 2023, I said goodbye to my family and flew to Spain. It was exciting to get out of the rot I’d been in for so long. But Marianne had warned me: “Flying will likely set you back a few days, you may feel bad.”. She was right.
For four days after landing, I was pretty much in bed all day and didn’t feel good at all. Sick and alone. But I stayed and executed the plan. Gradually, things improved. After a few weeks in Spain, I was consistently feeling good.
Yes, I used very little energy as per the plan (extremely boring), but for the first time in more than a year, I felt good many days in a row. Before flying to Abu Dhabi to celebrate Christmas with our extended family, I had 14 good days in a row! Marianne’s plan was working.
Treatment plan, step two
Whenever I fly I have several bad days afterward and the same happened in Abu Dhabi. But once I recovered I had another nine good days in a row. A few days after returning to Bergen, I met Marianne to discuss the next step of the treatment.
“You have made a lot of progress since we met. That’s great. Now it’s time to see if you can have many good days in a row while being at home with your family while also increasing your activity level.”.
The new treatment plan was as follows:
Goal: Succeed at home.
Be able to consistently have good days when you are at home while we increase the amount of energy you can spend.
Daily plan:
1. Do whatever it takes to get 8 hours of quality sleep.
2. Do very little the first two hours after waking up. Relax in your room until the family has left, then make and eat breakfast, and drink one cup of coffee.
3. Go for a walk for as long as it feels good. Stop right before or the moment you start feeling feel bad. This can be 5, 30, or 60+ minutes. Be guided by what you feel.
4. Rest actively for at least 30 minutes, for example by meditation or other relaxation techniques.
5. Socialize. As with walking, let your feelings guide you.
6. Go to your room immediately when you start feeling bad.
7. No traveling for one month.
8. Feel free to drink a bit of alcohol here and there if you want that.
Executing step two
As whenever I travel, I felt bad for a few days after arriving back in Norway. It also took me a few days to adjust to being home again, but after a week or so things started coming together.
As I’m writing this, on February 13, 2024, I have had 12 good days in a row. If I’m able to keep this up we will get to step 3 of the treatment plan when I meet Marianne in late February 2024. For the first time since getting sick in November 2022, I feel like I know what to do to recover. And I have Marianne in my corner – someone I trust and respect.
Going forward, the plan is to increase my energy expenditure gradually. When I’ve adapted to the next activity level, I’ll increase my activity again, step by step, until I’ve fully recovered. If I’m unable to adapt to the next activity level, I’ll reduce my energy expenditure until I feel good again, and then increase my activity level once more – being more careful this time around.
It’s similar to recovering from a bad injury as an athlete. You start very slowly and gradually increase the activity level from there. If you take on too much too soon, you’ll get injured again, but if you can be patient you’ll recover.
I’ve made great progress in the last few months. I believe in the plan, yet I think it will take time to recover fully. Marianne says she doesn’t know how long it will take, my guess is the summer or autumn of 2024. The most important thing is to keep improving. As long as that is the case, I know my family and I can get back to the life we used to have.
Some last words
My troubles are nothing compared to those who truly suffer – from war, poverty, crime, etc. Yet, since I have found these last 15 months difficult, I think the millions of others who struggle with long covid are suffering too. The purpose of this post is to help them.
So, if you have long covid, I recommend trying the treatment plan I’m on. I can’t be sure that it will work for you, but my results have been impressive – it’s the only thing that has worked. The advice I’ve read on the internet (buy expensive supplements, just push through, etc.) sucks, and the doctors have provided zero effective guidance.
If you don’t have long covid but know someone who does, consider reaching out to them and offer your support. They are fighting a difficult battle.
Bjarte