“My brain maintained my condition by pondering questions such as: ‘How am I doing today, which symptoms are the hardest, and consequently; what will I be doing today?’”

I am writing this to those of you who are ill and have lost hope that you will get well again. I write because I want the health services to be more knowledgeable in the way they meet us. It was tough having to go through this on my own, and I would have wished there had been a team of psychologists, physiotherapists, and doctors who would not focus on my symptoms but on my rehabilitation, but first and foremost that could have provided a fair explanation of what might have happened. This is an essential key for people to get the courage to rehabilitate.

Late March 2020 I fell ill, presumably with Covid-19. My children went through a bout of coughing and fever five days before me. My husband at the same time as me. (I did not take a PCR test when I was ill, as they did not exist at the time. Approximately half a year later I took an antibody-test which was negative, but antibody tests may come back negative even after confirmed Covid infections.) 

A few weeks prior to this, my dad had been hospitalised with another matter. This had me feeling quite apprehensive. Work was fine. I was just about to start a new collection task which involved quite a few participants. Things felt a bit demanding, but in general cool and something I could deal with. I have two children aged one and a half and three years old at the time. Not long before I fell ill, I remember thinking that the busiest part of the baby/toddler period, when you are so cautious and conscious of always keeping them safe, was now coming to an end. I had my husband, and our relationship was stable and loving. So, all in all, I was happy, even though I was living quite a busy life with small children, and there have been episodes of stress-related issues and anxieties in my life previously. Other than that, I have been well. I loved running! Swimming. Biking. I was very physically active.

It does not pass

I felt slightly ill, with a low temperature of 38´C, a dry cough and some difficulties breathing. It was a little uncomfortable, but I noticed that the condition did not get worse as long as I didn’t walk fast or move about too much, I could breathe quite well. The fever dropped already the next day. The strenuous breathing soon thereafter. I was keen to get back to running, so after a couple of weeks, and despite a sense of tiredness in my chest, I went outside for a run. After only ten minutes I had to turn back. I had no strength in me.  I felt unhappy that I was not back, and a few hours later the fever returned. 38 degrees. The day after, I felt better again. I continued to work from home and gave up trying to run. I took walks. A few weeks passed. 

"Every morning I woke up with the same sensation, feeling shivery and cold. My lungs were gooey."

The weeks went by. After a couple of months, I went to see my doctor. He reluctantly agreed to see me in a corona tent with protective gear. He did not believe I was infectious but there was a discussion about how we that were sick for more than two weeks should behave. Could we infect others? A few weeks earlier the stuffiness of the lungs had lifted. Suddenly, in the middle of a deep breath. At the same time, new symptoms presented themselves. Headaches, brain fog, prickly sensation in my arms. Getting up made me tired. I could only walk for a short while, but then I would need to sit down. It felt like my body was telling me to lie down. It sounds peculiar, but you that have been there will know what I mean. I felt slightly ill all the time. Feverish, although the temperature was only slightly elevated. I felt weak like you do when you’re ill. There was some sensitivity to certain foods, as well as to cold, to heat and to things that felt tight against the skin. At this time, I had begun to feel lonely in this, and started searching at Facebook. I found a group called “Covid-19, we who are affected” which I joined. There were a couple of hundred members, and they seemed to discuss more severe symptoms than the ones I could recognise, and the first post I saw, something about very low blood oxygen levels, frightened me, so I left the group again.

The hardest thing

I can’t recall getting any words of comfort or specific advice from the first doctor. He said there was nothing wrong with the blood tests. It was highly probable that I had had covid, he said, even if this wouldn’t show up on blood tests this late. At that time, it was too soon for anti-body tests. I was so exhausted I could barely walk for a few minutes, and it was a real struggle to continue working from home, so it was strange to hear that nothing was wrong. I was consumed with worry, even though I was functioning relatively well. The hardest thing was that there was this sort of silence at the Doctor´s and the health system that I couldn´t put my finger on. When you get no explanation for your ailments, it is so easy to start doubting that you have a real illness. I think the lack of explanations was the worst thing to handle.

That was also the reason why I joined that Facebook group again a few weeks later. I did not want to feel so alone and found some comfort in the fact that there were many of us, even though I still didn’t like the focus on symptoms. Some members wrote long lists with loads of symptoms. Others discussed some of the tougher symptoms. I recognised most of them and enjoyed hearing other peoples´ stories. After I had been ill for about three months, in mid-June, things eased up again. I managed to walk three to four hundred meters and to spend fairly long periods with the kiddies in the park. I remember feeling relieved. 

Overdoing things – getting worse

Less time was spent on the Facebook group. I felt that the improvement “just happened”.  I had learnt to take it easy, and every time I did, things improved after a couple of weeks.

However, along with the knowledge that things got better when I slowed down more than I thought I needed, came the realization that things could get worse if I overdid things. Just a rather demanding day and having to visit the ER with an infected sore – something entirely unrelated to the rest – made me feel worse. Half the summer went by without anything changing. I called the surgery and said I wanted to see another doctor. I can´t really say the first doctor didn´t take me seriously, I believe he took the correct samples, and he did say this was an after-effect of an infection, it was just that I had never heard about anything like that lasting more than a couple of weeks following a flu or such like. This thing was different. I was able to sit outside and have dinner, and to come along for trips in the hired car. But I could not cope with anything physical. Walking one to two hundred metres was fine. But no further. After that my body kind of gave me a warning. I ran a temperature. Sometimes almost 38, but never higher.

Quite often I didn´t get a fever at all, and for long as I did nothing, I did well. It was as though my body had an overreaction to all kinds of stimulation; heat, cold, exertion, stress…. On hot days I could get so weary that I could barely get up at all and felt dizzy when I did. Cold made me go red, and my skin started to sting. I even had irregular heartbeat, and trouble breathing. I remember thinking at the time that these were excessive reactions, rather than a sickness. I recognised the symptoms from my normal life, from when you have an infection or just a bit under the weather from not sleeping well, from a hangover, or having trained or stressed too much; but it was simply the intensity and the lasting sensation that made it unusual.

Adequate reactions

After I had been ill for four and a half months, I got a new doctor’s appointment. The doctor said this seemed really tough and it would probably be over soon. “You probably need to rest a little more”. “Don´t think about ME.” I had said I was worried this might be ME. Many on the web said that this was akin to ME. I did not get any recommendations, no explanations. She ran a few more tests and they looked good. I felt a little stupid. I was left to carry on as best I could. It was just that factor – to not have any direction – that was the hardest thing, to have nothing to relate to. It left room for worry. “Why do I not get well again”, I thought.

I wouldn´t describe my thoughts as negative. Just logical consequences. That is a key in this condition. When you are sick with this very real ailment, this is exactly how it is – one feels convinced that the physical conditions cannot be influenced. One quite simply believes that one’s reactions are adequate. “I am sick. That is why I feel down. My physical symptoms are not related to my feeling despondent; they are in consequence of this”. I often felt low, but I was able to feel happiness, joy, and all sorts of feelings. I was not depressed. I did not believe that any worry I might feel, which was not that strong, could be a contributory factor or even an important cause of my symptoms.

Autumn arrived. I would have gone back to work if things had been normal, but the brain fog which had increased over the last month, meant I was unable to. My capacity stretched to about one e-mail or text message per day. And that was the brain energy expended for the day. I rested. Moved between the couch and the kitchen. Making tea could be one activity. One day I baked some rolls. If I rested between finding the ingredients, stirring, into the oven, and out of the oven – I could do it. A full day’s task, in other words. Sometimes when I slept in the middle of the day, I might have some energy for a while in the afternoon. Then the children came home. I could not be with them, but at least they were there and that gave me some comfort. And in the evening, I could almost always manage to read them a book.

I could not do anything of the things I loved

By September I began to struggle mentally. I loved to work, run, sing, play with my children.  And now I could do none of these things that I loved. In the brief moments when I could do some light tasks, I would google how to get well from post viral syndromes. It was the only thing that was meaningful. Not even my children felt meaningful anymore, as I no longer was able to do much with them, and they turned more and more to their daddy. It was an overwhelming burden to bear. I tried to learn more about ME. Even if everybody in the media said we did not have ME, but something else that was Covid-specific, I believed this was ME. When I spoke to the doctor that autumn, she also said that it sounds like ME. I also drew the conclusion that I occasionally had POTS.

One day my son came home with a bleeding chin. He had fallen. I could not deal with seeing that, and almost fainted. Afterwards I remained lying down on the bathroom floor for three hours. If I moved even a bit, I felt faint again. Afterwards I was able to lie down in bed. I remained there for three weeks. I went to the loo, and I sat down to meals with the rest of them, other than that, I just lay there, dozing. Sometimes I cried, but that took too much energy, so I could not even do that. I became sensitive to sounds and light and wanted earplugs and the curtains drawn.  After a few weeks, things improved slightly, and I could get up for a bit, but I was still sensitive to sounds. Things could not get much worse. My husband called the doctor and asked for a referral to the post Covid ward at the Karolinska Hospital. After a few phone calls I finally got an appointment booked, which felt important.  

Recovery Norway

Meanwhile I still spent some time googling how to get well again.  One Sunday I happened to google the word recovery together with post viral, ME or some such thing. Up popped the webpage for Recovery Norway.

"I began to feel hope returning. I was suddenly, after a few hours of reading, completely physically relaxed, and I knew that I would get well!"

And then I started to read the stories directly. I read one, two, three … then took a break and went upstairs for a while. Then I went back to bed and read again. Many more pieces. I began to feel hope returning. I was suddenly, after a few hours of reading, completely physically relaxed, and I knew that I would get well! The feeling was just incredible. I could relate to all the stories. And even the next day, I had a direction again! And after only a few more days, I could stay up more or less all day. I found comfort in reading stories as soon as I felt some symptoms coming on. Sometimes I just read a few opinions, sometimes a whole story. I put what I read into practice, using what the stories described as keys to my own healing. Since I could feel my body responding so strongly to the stories, I could retrieve that same calm feeling when I started to have doubts. The fact that other people had suffered more than I, simply made me think: “If they can, so can I!”

What went through my mind as I was reading these narratives? Partly, I recognised the symptoms; the most important aspect of which was that their symptoms worsened with activity, just like me. This meant I could relate to almost all their stories even though they all had different causes and didn’t look the same. For the first time I came across personal stories that actually ended well! That was so wonderful to read! And partly, for the first time I felt that there was a credible explanation to my condition. Even though the way I got ill was still a bit unclear, I found support in my interpretation that my symptoms were over-reactions by the nervous system, rather than an actual illness. And I began to realise that the thoughts I had been nursing: “Why don´t I get better” or “When am I going to be well again”, were; albeit understandable, negative ones. The explanation that the overall stress load in life was too big, as told in several of these stories, corresponded with mine.

A new understanding

There was an important element missing in all these stories, i.e., a clear explanatory model for these symptoms, and a practical understanding of how I might best go about getting well again.  It did not seem clear how the Lightning Process courses that most of these people had gone through had made them well again, and their personal narratives missed, for natural reasons, certain steps in the understanding of how they could be so sick one minute and then get well again so quickly. I therefore started reading up on the nervous system, stress reactions, NLP which this method was partially based on, and about the brain’s plasticity.  I read a book entitled När kroppen säger ifrån (When the body warns you) by physiotherapist Britt Braggé, who explains why breathing exercises are good, what happens when you start up physical activities again after being inactive, how pain “sets/lodges” in the body! I read loads of articles on the web, mostly research and science journals, about how the autonomous nervous system governs our lungs and breathing and how even the blood oxygen levels could be reduced on these occasions.

Much of what I read seemed very good and clear, but I found it quite challenging to put it all together into a distinct story. I needed to continue to believe that I could retrain my body to not react so strongly to everything, first and foremost all physical activity (even just walking 100 metres or getting up, that is). I still do not have a complete picture of it all, but the more I read, the more convinced I felt. I even felt it in my body. I started to look at physical activities as a strain at this time, so therefore I made sure that I first put myself in a “good feeling” before I went upstairs to make tea, for example. I thought about something nice, such as my children´s laughter or such, and then I went upstairs. After a few weeks I could go outside for a bit every day. I walked one hundred metres a day. After a week I did two hundred meters a day. After two weeks, three hundred meters. After this, six to seven hundred metres a day.  I was pretty nervous but thinking about something nice before I went out really helped. I talked to myself: “I can walk a hundred metres; my body can do it.” By telling myself that I could, it seemed like my body could deal with more. I helped myself by repeating these fairly silly, but important beliefs.

“Physical or psychological?” Wrong question!

A few weeks after I had started to improve, I was due for my very longed-for appointment at the clinic. Lots of blood samples were taken in advance, and I got to see a very alert psychologist who told me that those who had been most successful in their recovery were the ones who had progressed slowly. I listened to this. He said body and mind was one. Although it was very clear that the clinic overall made a clear distinction between psychological ailments as a response to the illness, and the physical illness per se. This was a distinction I had abandoned weeks ago. The question is not whether this is a physical or psychological illness; that is the wrong question to focus on. My interpretation of the events leading me to where I was, was that my brain maintained my (poor) condition by pondering questions such as: “How am I doing today, which symptoms are the hardest, and what does that mean I will be doing today?”

I guess I also felt a sort of low intensity worry about my illness. I think that the overall load, a real virus infection such as covid, the general mood and worry about the pandemic in society at large, plus my own status as a mother of young children, together with my worries that this simply never seemed to go away, altogether resulted in an overload for my body. Perhaps also, having an easily engaged personality, makes me susceptible to enhanced stress levels. I simply love having a lot on, and I have a wide emotional range which sometimes causes my feelings to sort of “overflow”.  This was a key to my understanding that what I had had was physical and real, whilst also being convinced that you can get well on your own through a holistic understanding – by not making any distinction between the physical and the psychological. I changed my perspective. Even though I was happy I felt a certain sense of void for letting go of my commitment to finding something that could make me well again. Along with my commitment to everyone else who were sick.

A long and winding road

Thus started a long and winding road back to how things are today. I got in touch with Recovery Norway after a few weeks, to thank them for getting my life back. I spoke to another formerly sick person and a couple of times to Henrik Vogt. This made Recovery Norway and the stories I had only been reading about on the web become more real. I read Live Landmark s book. I suppose I would have benefited from a course in the Lightening Process, which many of the people posting had done. But at the same time, it was the actual stories that had made me so hopeful, it was the stories I wanted to take refuge in. Of course, there is a cost to taking a course as well, but that was not on my mind. I have a little saved up. When I’ve struggled with stress and distress on previous occasions, I have undergone therapy and learnt how to handle symptoms through getting involved with matters that are meaningful to me. I worked at trying to accept my symptoms, not assess them, and for short times at a time, do more and more usual things.  
I carried on my efforts to be “re-set” again.  Simple things, such as viewing calm YouTube clips, hugging my husband or my children or counting the colours in the room (and other mindfulness practices) when I was feeling tired. I never put any pressure on. I practiced how to have a relaxed mindset in all situations. I started up the zoom meetings at work by hugging myself. I practiced speaking slowly, I performed progressive relaxation with Rick Hansen who I’d seen tips about in some of the stories in Recovery Norway. I listened to several self-help podcasts that were suggested to me by a friend (Brené Browns Unlocking us and Bewildered The productivity addict are two good ones).

My symptoms increased whenever I did stuff, but if I did not react to them, but simply carried on doing whatever I was doing, things did not get any worse. To put myself into my calm mood, I used to take a few deep breaths, with longer exhale than inhales. It took quite a while until I found the right type of breathing rhythm. For a long time, I had an increased need for rest, and my mind quickly felt tired for months after I had started to do better. But I felt all along how my body grew better and better overall, which made me keep faith that things would work out. A radical difference from before is that I no longer became worse whenever I did any activities. I felt a more varied range of symptoms due to activities, but as I did not respond to them in any other way than simply stop a little, or take a few breaths, and remained steadfast in my faith that activities were good for me, I was able to slowly continue.

When I was able to work 25% again, I would typically spend one hour at the PC, take a long break, and do some yoga or breathing exercises. Afterwards I could work another hour at the PC. Practically every day I upped my activity level – with baby steps. One day I did two push-ups on all fours, two days later I did three push-ups. When it came to bigger stuff I stayed at the same level for some weeks before I increased the sets. But it wasn’t the training sessions per se that made me well again, rather that I had such hope and faith in my body’s ability to relearn. The training formed part of this, and even if it was unpleasant, it felt right to increase the activity levels. When I stopped focusing on finding a treatment or medicine for my condition I did better and better. The good circles took over more and more.

A couple of exceptions

When I was at the Covid clinic at the Karolinska hospital a few weeks after I had come across these stories and started to do better, a couple of deviations were discovered. I did not have a full lung function at spirometry tests. And my Oxygen count was low when I walked fast. I asked whether this might be because I had hardly moved at all this past year. The physiotherapist said they thought it was because of the virus and that I could continue with the walks but no more than that. Just a week earlier I had barely been able to walk 100 meters, but I now walked 700 metres on that day. I was not told whether things might go well or not, nor was I given any specific treatment. Today I am just sorry I was there. I do not know if the intention was to get me some help and that they were simply overwhelmed with work, but after a while I started to see the visit as detrimental to my health. I no longer believed in the strictly physical explanation model.

The physiotherapist said I had probably reached my limits and my level of exertion. It was clear that she did not think I should increase my activity levels. After I was there, I bought an oximeter to have on my walks. This was not good at all! I now became obsessed with measuring my blood oxygen level – which was often low when I moved around. The end of the story was that after having measured a low oxygen level and low pulse I went to the emergency room. I was ready to faint. When I was at the ER I felt ok again. I felt slightly ashamed, and the doctor thought the low numbers were due to an error. Even though I believe that those low numbers were in fact for real, I threw away the meter after this incident. It was really tough. It had felt so safe.  In my rehabilitation efforts I instead needed to go against what the doctor and physio had told me. After this incident I have often felt faint when I’ve been out walking. Once I had learned to reflect that this is most of all an indication that I may need less of a strain overall, I feel less dizzy.  I may have had a busy day and need to take things easy. I take a few deep breaths and think that my reactions are somewhat over the top. When I feel better, I go for a bit further.

Almost completely well

Just over half a year after I started to feel better, as I am writing these words, I feel almost completely well. I have taken up running. I work enthusiastically 75%, I take care of my children and I feel well enough to see people. I can spend a whole day at the PC and write complex texts. There are times when I feel a tiredness in my head and eyes in ways I did not before, but it is improving all the time, week by week. I feel very hopeful that I will be completely recovered in the future and even feel better than before. I now even feel privileged to have experienced this.
I am writing this to those of you who are ill and have lost hope that you will get well again. I write because I want the health services to be more knowledgeable in the way they meet us. It was tough having to go through this on my own, and I would have wished there had been a team of psychologists, physiotherapists, and doctors who would not focus on my symptoms but on my rehabilitation, but first and foremost that could have provided a fair explanation of what might have happened. This is an essential key for people to get the courage to rehabilitate.

The rejection of psychological models  

And: one more thing. In Sweden there is a massive focus that post-covid, or PACS, as it is also called, must be taken seriously. The Covid clinic at Karolinska in Solna, for example, differentiates between psychological and physical symptoms or conditions. They claim to be open to all reasons for the illness, but even so they say that anxiety may be a result of the illness, and not the illness itself. How can they know this? I do not think that we shall try to squeeze in everything that can be impacted by CBT-alike treatments for anxiety. But the separation between the psychological and physical symptoms is unfortunate.

Since that particular clinic sets the standard for how testing, diagnostics, research and potential rehabilitation methods for post-covid patients in Sweden will look like, I feel worried. It is difficult to go against doctors and physiotherapists the way I did, when they explicitly tell you to make use of the method called pacing, i.e. try to conserve your energy and use it sparingly on the right things. To not increase activity levels step by step. The rejection of psychological explanation models means that the research is not open to all potential causes and explanations. Until we know what causes this condition or conditions, the medical community will recommend using pacing for example, despite also saying that this should be seen as something other than ME, at least for now. The consequences are unfortunate and unclear.