Recovery Norway does not make any claims about how many can get well from strategies like the ones our members have used, although we do think they are evidence that it is possible. We do acknowledge stories of people who have experienced worsening symptoms after such strategies too, and we think this is one reason for doing more research.
At the end of the summer in 2010, I started at medical school together with my brother. A new chapter in both our lives was about to unfold, and I was totally convinced that the world was at my feet. This was presumably due to my age at the time. The late teens and early twenties is probably the only time in life you can get away with a touch of hubris… At any rate my future looked bright. Gone were the pimples, the gangly body and the uncertainty about what to do with my life. Armed with a beard (of sorts), a muscular body (if I can trust my memory) and conviction (possibly over-confident) I set out into this new world.
Fantastic in every way
The first part of the autumn that year can be summed up in two words: a lot! I partied a lot, I trained a lot, I met a lot of people, read a lot and not least; I tried a lot. I tried hard. I was on the threshold of a new life that was going to be absolutely brilliant, and there was no time to lose. There and then I felt this was the best time of my life ever, but with the benefit of hindsight, I was probably also more stressed out than I had been before. Self-understanding requires a special talent. We humans are good at a great deal of things, but where we really shine is when it comes to bullshitting ourselves. To quote Henrik Ibsen, “If you take the ‘life lie’ from an average man, you take away his happiness as well”. Maybe it is a good idea to “fake it till you make it” sometimes, but as with everything else, you can take it too far.
My endeavour to be the best version of myself, practically without any flaws or shortcomings, was probably quite an arduous project. I was trying to pretend that I was totally unfazed by things that I actually found tough, difficult, unpleasant etc. But then again, I won’t deny that overall I had a really good time throughout this, it is just that the negative and positive stress factors got mixed up in a way that made it difficult for me to distinguish between them. I probably also have a touch of alexithymia (i.e. difficulty to recognise and describe one’s own emotions) which made, and probably still makes, the details of my emotional life likely to fade a little. Many of the reasons that caused me to living my life in the fast lane were probably not harmful in themselves, but they did probably get mixed up with a few less favourable things without my noticing.
I probably also have a touch of alexithymia (i.e. difficulty to recognise and describe one’s own emotions)
Dark clouds and frustration
Happily unaware that there might be aspects of my life that I should have stopped up and questioned the usefulness of, I carried on blithely down the same track. As autumn progressed however, a few dark clouds started to gather on the horizon. The upper bronchial infections came back more and more frequently. No sooner had I recovered from one cold than the next one came along. Now this did nothing to slow me down, of course, but it probably meant that I put my foot on the pedal a little harder than previously. The frustration began to grow in intensity in that I didn’t feel as fine and fit as I had in the previous months. I won’t bore you with a detailed timeline of these infections, but at a point in time everything simply stopped. I could no longer force myself through a training session, social event or more hours in the study hall; it just stopped.
The upper bronchial infections came back more and more frequently
I went to see my GP and was eventually told that I probably had a cytomegalovirus infection which presents with a pathological picture similar to mononucleosis. After a couple of weeks of taking things very easy I felt better, and started up again. However, nothing seemed to work the way it used to. Everything felt heavier, and if I had been strained before, it now became positively forced. Slowly, but surely I was heading for a new stop and this time it seemed more permanent. The symptoms were spinning out of control. If it wasn’t a headache, it was dizziness. If it wasn’t fever, it was nausea. If it wasn’t pain, it was guaranteed that I would be feeling worn down and woozy. The fear of what on earth might be the matter with me started to creep under my skin and over the period of just a few months I had gone from feeling like the king of the castle to feeling afraid, worn down and exhausted.
The symptoms were spinning out of control.
There were not many compulsory lectures in our second year of Med School, and I managed, only just, to drag myself up to the faculty at the National Hospital on the few occasions that I had to turn up in person to avoid being put back a year. The rest of my time was spent in bed, on the couch or at the doctors’. It is not like I was never examined, but all the tests came back with no answer as to why I was feeling so rotten, whether these were blood tests, medical imaging or cardiovascular monitoring. Eventually the word postviral fatigue popped up, but no-one could tell me how I could recover. The ensuing months were like shades of nothingness. Or perhaps that is a too positive description of this period, but certainly there was not much happening. They say that a little knowledge is a dangerous thing, and not without reason. Both my Med School fellow students and my own head seemed more than willing to offer up serious diagnoses that could explain my symptoms, such that there was always available fuel for an ‘anxiety’ fire. It probably didn’t help, but I can’t say how much any of all this mattered. Furthermore, it is quite common that the rational parts of our brains often have to yield to strong emotions. My desire to get better, and my fear of enduring sickness, trumped any principle and conviction, and so for the first time I explored alternative therapies. Believe it or not, but none of these proved to have any effect.
I always had plenty of fuel for my worries.
After some time of being frustrated with the lack of progress, I replaced my doctor. At the time my reasons for changing him out were probably somewhat unfair, such as the fact that he was unable to find out what was wrong with me, that he probably had missed something important, and that the follow-up was far too lax. In hindsight, I do understand why I felt this way, but I wasn’t being fair. But although my reasons for finding a new doctor were not quite the best, it would nonetheless prove to be a very good choice.
A new doctor and accountability
I had one appointment with my new doctor before the beginning of the end of this nothingness. My take-home message from this doctor, which I carry with me to this day (despite us not seeing each other so much any more), was that I was the only person who could find a way out of my postviral fatigue. This new doctor would be happy to refer me to any examination and medical specialists so that I could to put all my troubles and thoughts of what this might be to rest once and for all. However, his clear message to me was that at some time or other I myself would have to find out what could make me well again. As I left his office after our first meeting I was naturally very disappointed, thinking I should never have swapped doctors, but in weeks that followed my thoughts started going down a different track than they had done in the previous months.
I was the only person who could find a way out of my post-viral fatigue.
I had been held accountable. Not for falling ill, but for becoming well again. Now this is of course a controversial subject, but having gone through months of feeling powerless, there is no doubt that I responded particularly well to being given some responsibility. The message was that the doctor knew about people who had found a way out of post-viral fatigue, CFS/ME and all that, and in his experience they had all found their own way out for themselves. Well, not necessarily entirely on their own, but not as a result of any referrals from him. “This is not going to disappear by itself. You cannot sit here and wait for it to be over. You need to actively find out what to do in order to break out of this negative spiral.” That was quite a brutal message to receive; especially for a person who had spent half a year waiting for things to pass, but as it turned out, this message was the beginning of the end.
The GP knew of people who had found a way out of post-viral fatigue
Following another session, my doctor and I agreed that I would see two different specialists before we could decide that I was diagnosed. Neither specialist found anything, but mentally I had already started planning the road ahead, so their conclusion did not come as a surprise to me, as far as I can recall.
An important phone call
I had heard about the Lightening Process (LP) prior to falling ill, but only after the meeting with my new doctor did it gradually become clear that this was the path I was going to take, despite having a rather limited understanding of what it all involved. It was not the only alternative I considered. I made a phone call to a doctor who had a good track record of helping people though something you might call conversation therapy, but we never actually met in person. All the same, the conversation I had with him over the phone was highly important, and much of what we discussed has stuck in my mind ever since. I remember that call like it was yesterday. Here again, the message was that I myself had to do something to get well again. Furthermore, this doctor told me that I had to begin to do things in life differently than I had before. My wish to become well again so that I could go back to the life I had led previously did not impress him much. On the other hand he gave lots of support and encouragement that I would manage to get well again, whether it was this way or that way. We talked for almost an hour and agreed that first I would try the LP program, but that I was more than welcome to get back in touch with him, if LP proved not to be the way out for me. I never did have to contact him again.
A brain that gets stuck
In the summer of 2011 I attended an LP training course in London, UK. I was not among the ones that experienced a drastic immediate effect, but at least now I knew what I had to do to break out of the bad circle I had ended up in. Gradually I understood that my brain had become totally stuck on focussing on symptoms, which was probably not so strange really. Having been through a remarkably long viral illness, it is not so unusual that it would expect to find fatigue, muscular-skeletal afflictions, headaches, fever and a general sense of not feeling too good. Brains can get stuck on all sorts of things, and my brain had found this to occupy itself with.
Difficulty in recognising the nuances of what was wrong, made my brain transmit especially strong signals.
Furthermore I also believe that my inclination to realise that something was wrong, but having problems recognising the nuances of what was wrong, made my brain transmit particularly strong signals, so that at least I would get the message that not all was right. This is a fairly complex point, but an important one in my case. There are different parts of our brain whose job it is to tell us when we are exhausted, and in many instances this makes sense. Unfortunately I tended to keep going anyhow, never paying much heed to the various nuances in these types of signals.
Whereas other people might have realised that they were not feeling so good because they were in a relationship with somebody incompatible, or that they had chosen a field of study that might not be right for them, I think my own recognition was limited to seeing that everything was not perfectly great, but not being able to comprehend the details and causes for this. In the end I believe it was actually easier for my brain simply to cry “stop!” really loudly in order to catch my attention, than might have been the case for other people.
I do not believe this is what triggered it, but as I believe that my state of fatigue came as a result of a series of unfortunate factors that occurred at roughly the same time. This might partially explain why my reaction came to be as strong as it did. Having a brain that might need stronger signals than others in order to actually change my behaviour and which subsequently gets totally stuck on focusing on the signals that then followed, it seems clear that I needed some help from outside parties to find my way out of the roundabout that I was so completely stuck in.
Slowly, but surely I managed to get my brain to change tracks, so that longer and longer periods were not spent inside the negative spiral, gradually enabling my body to behave more and more normally.
Slowly, but surely I managed to get my brain to change tracks, so that longer and longer periods were not spent inside the negative spiral, gradually enabling my body to behave more and more normally. My exams had been postponed from the spring till late summer, but during the holidays I recovered sufficiently to get an average pass so that I could progress on to the next term. This would never have been possible without my brother, who already had been through the same curriculum and now acted as my private tutor throughout the summer. When I was no longer able to read, he would step in and tell me everything I needed to know. There is nothing in life as important as good, safe relations. Everything else can go to bed compared to this. Not only did I receive free tuition, I was also given support, distractions and not least company.
There is nothing in life as important as good, safe relations
As a result I never lost a term, never flunked, and never fell behind. Once I recovered, none of my life had been put on hold in the meantime. I am so incredibly grateful for this, especially knowing how many years of their lives other people have lost because of CFS/ME. In a way, my life was still waiting for me, and I was ready to pick up where we had left off as soon as my fatigue was gone.
How did I end up in this circle of fatigue?
The remainder of my story primarily deals with introspection, which is what I suppose I did in the years that followed. How did I end up in this spiral of fatigue? What had I potentially missed? I have mentioned a few elements already. Going at full speed, and although I actually enjoyed most of what I was doing but perhaps not all of it, plus having a below-average ability to recognise that all is not as it should be in my emotional life, plus bad luck causing me to get a mononucleosis-like viral infection at a time when that was probably the last thing I needed. This is not the whole story, of course, and the words I had been told in June 2011; that I would need to do many things differently in life, stayed with me, even as the symptoms were fading.
For a while I deliberated whether I should give up Med School, as I was uncertain about why I had started in the first place. Was it because I had good grades, because many in my family had done medicine, or was it subconsciously because my future hopes of becoming a professional footballer/rock star had turned out to be a pipe dream, so that I had to resort to another way of getting status? In the end I decided to continue. In retrospect I am happy that I reached that conclusion, but I am also happy that I thought through my options. I guess this is why I have not been striving for a career as a surgeon, but opted for a job where I can work regular hours, have varied working days that range from patient contact to tuition, and that leaves me with sufficient time and energy to carry on with other enjoyable projects in my spare time.
The next point is an old classic, of course; but I have become genuinely better at saying no. Not just saying no; but not providing any excuses or explanations as to why I say no. Boom. It works. I have a more honest image of who I am and what my positive and negative sides are than I had before I fell ill. The attempt to look like some superman with no problems whatever was always doomed to fail, but I packed it in of my own volition after my bout of sickness. In short, I now do a lot more of what makes me happy, and I do not mess around trying to do loads of stuff that is not good for me. Other than that, I have stopped trying so damned hard.
Eight years have gone past since my recovery. My life is probably healthier, broadly speaking, and better than it was before I became sick. They say that what doesn’t kill you makes you stronger, but in my experience what doesn’t kill you only makes you suffer more. Despite it all, I have learnt a lot from this experience, lessons I probably would have had to learn sooner or later in any case – although I would have been happy not to have had to go through the kind of circumstances that suddenly made it so necessary to change.
Since making my full recovery, I have completed my medical studies within the standard timeframe, and worked full-time as a doctor, including periods of 19-hour night duty without any more fatigue than my colleagues
Since making my full recovery, I have completed my medical studies within the standard timeframe, and worked full-time as a doctor, including periods of 19-hour night duty without any more fatigue than my colleagues, before deciding that life is too short to keep up this type of pressure for ever. Today my life is better than I could ever have imagined. I like my job, I like my side projects, I like my work-outs (and my muscles are back), I have a wife and our life together is so happy that I can hardly believe it’s true and together we have the cutest, maddest, angriest and sweetest little daughter. She had me wrapped around her little finger from the day she was born.