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.
This is the experience that made me take an interest in the relationship between the body and the brain. It is this experience and what I learnt from it that have made me so enthusiastic about THE BRAIN, and how the brain affects the body! And most fascinating of all, how we ourselves can program and train the brain to impact our body in a beneficial way!
Before I begin telling my story, let me underline that what I am sharing is my own experiences. The solutions I write about here are the solutions I found that helped me get rid of my illness. I know that corresponding or similar solutions have worked for others, too, but I will by no means claim that they will work for everyone.
So here is my story.
How it began
I had been feeling tired and miserable for years, perhaps for as much as ten years. By autumn 2015 it had gone so far that every little task was beginning to feel insurmountable, hopeless – totally hopeless. I mobilised what little energy I had to get through my working day. Once that was over, as I locked my office door and headed for the car, I felt a complete washout. Done for, knackered! I could hardly stand upright.
There was nothing left of me. I couldn’t do anything. I couldn’t play the radio in the car, couldn’t have a conversation. Couldn’t answer a simple question, do the shopping, cook a meal. I could hardly eat a meal! It was straight to bed for me, and there I stayed until I had to go to work the following day. Weekends were also spent lying in bed.
My partner thought it was strange that I who was resting so much, never felt rested. What he didn’t know was that when I was lying in bed, I didn’t rest. I wasn’t able to rest.
For while I was lying flat in bed, my body continued running in top gear. It ran entirely by itself. People may think my body was running in top gear because I was worrying or stressed out. But I wasn’t worrying, and I wasn’t stressed out. I was just lying there; lying there and trying to endure. My body was fighting. My pulse was sky high, I had intense pain everywhere. It felt as if poison was pumping through my arteries and veins. I was lying there, feeling very ill indeed. There was no rest, and I never felt rested.
Finally I began to feel worried. Would the rest of my life be like this? How could I endure that? All I wanted was to get some sleep – to get away from the pain, the feeling of being ill and the awful pumping in my body. The whole thing felt like a hopeless battle which I didn’t have the energy to fight. I longed to be let off. Not that I wanted to die, but I really wished for some sleep so that I didn’t have to feel so awful. If only I could sleep for a hundred years…
My total collapse came in early 2016. It was a weekend, and I was doing my very best to muster some energy before going to a major conference in Oslo the following week. I spent the entire weekend in bed, completely exhausted and with intense pain. I couldn’t do anything. The only thought I had was “How will I be able to pack a suitcase?” If I managed to pack a suitcase, I might also be able to travel. But packing my suitcase seemed an insurmountable task.
On Monday, the day of departure, my suitcase had still not been packed, and I was quite simply incapable of looking after myself. I was helpless! Only then did I realise that I couldn’t go – travelling would not be safe at all. I was unable to look after myself!
I now mobilised the very last of my resources to get to the doctor and have her write a sick note. I wept in the HR office when I handed it in, because I realised that I would need a lot of time off. I was so desperately sad! I felt I was letting everyone down.
When I got home that day, it felt as if a huge bulldozer was running over me, mashing me. Everything had come to an end. The light went out, and I surrendered. Then at last I got some sleep. I continued lying like that for six months. I couldn’t do anything. If I became just slightly stimulated or tried to do something, the very smallest thing, like watching TV, I became terribly ill indeed.
After six months of just lying down I gradually managed to get out of bed, be outside and with other people, but only for very short periods. All attempts at doing something were punished severely. Whenever I pushed myself a bit and did something, I was ill for days and sometimes weeks afterwards.
Duties or fun activities – it made no difference. The outcome was the same. If I visited a (very quiet) cafe with a friend, I managed to chat for a maximum of 20 minutes. In the end simply chatting was such hard work that I had to stop. If I had kept going I would have vomited, that is how worn out I felt. Just one more word, and I would have thrown up.
I was only given a diagnosis a little over a year after I collapsed and went on sick leave. After six months of sick leave my doctor started assessing me for CFS/ME. I had what felt like trillions of medical examinations and innumerable blood tests. But there were no findings, except chronic slight fever and a high pulse.
My doctor concluded that I had CFS/ME after examining me according to the strict Canadian criteria for CFS/ME, but she also sent me to an ME team at the hospital to have her diagnosis confirmed. Following four days of assessment in hospital, the diagnosis was confirmed. There was no doubt. I suffered from CFS/ME with diagnosis code G93.3 Post-viral fatigue syndrome, to be exact.
Looking back on it, I had probably been ill since the winter of 2004/2005. Personally, I think my experiences during and after the tsunami in Southeast Asia in December 2004 triggered my illness. I was not caught in the waves, nor did I lose someone near and dear to me, but the experience I had by being present, by realizing what a close shave I had had, affected me deeply.
My body went into a state of emergency. It felt as if the security in my life had been torn away, and I walked around feeling terrified. I was constantly afraid that something might happen to my loved ones. Every single night I dreamt that the waves were coming and that I had to keep track of all those I loved and save them! I was like shell-shocked when I was outside; strong sounds or a gust of wind made me jump, and I was always keeping an eye on the ocean and the horizon. After three months of this I was given help by a psychologist, and that worked really well. Just five sessions made things fall back into place. I was no longer scared and felt I had put the awful experience behind me.
My thoughts and emotions were all right again, but shortly afterwards my body began to go on strike for some reason. Badly so. Just out of the blue, everything became so incredibly heavy. In hindsight I think the psychologist had helped me put my thoughts in order, and I had put the disaster behind me. But what no one thought about or told me, was that this state of emergency no doubt had settled in my body as well. In the physical, in my body’s signal system. So even though my thoughts were in balance, my body continued to wage war. Fight or flight.
The ensuing time was severely affected by this fatigue that had arisen. I was worn out by the slightest effort. Everything I loved doing became so awfully hard. And all the other things that I didn’t love, but just had to do, like housework, felt more and more impossible. I also went through a series of severe infections, and it looked like every infection took my strength many notches down. After a bout of mononucleosis in 2010 I hardly managed to stand on my feet, and a doctor put me on sick leave for the first time in my life. But then I managed to get up again. And so it came in waves – really bad health alternating with glimpses of slightly better health.
During this entire period I tried my best to live a healthy life. Eat healthy food. Be active, exercise. Everyone told me that it was no good lying on the sofa, that I had to exercise to get energy. I embraced the exercise with all my heart, I ran and ran. I kept exercising, but every time I went running, I was less fit than the previous time. It was enough to make one despair! But not only did my fitness seem poorer every time I ran; I also began getting what felt like the flu after every run.
I kept wondering what was wrong with me. Why did I feel so much more exhausted than all the others? Why wasn’t I able to do what everyone else could do?
I did not at all understand that I was ill. I blamed myself for everything, I had poor personal qualities. Weaknesses. I expected other people to think that I was both weak and lazy. In the end I began to ask myself the same question: Was I lazy? Weak? But I was not.
My steps on the road to recovery
Then I recovered, however! One could hardly believe it was possible, given how ill I had been and for how long!
I would say there were several factors that contributed to my recovery.
The first factor was my surrender. I stopped fighting the fatigue and just let myself fall. I realised that I couldn’t manage any more.
The second factor was to give myself a proper rest. In addition to suffering from CFS/ME, a state where the body responds by being on its guard against everything that might feel like a strain, I think it likely that I was burnt out on top of everything else. Having pushed myself hard over so many years, battling all my responses to strains, my body had of course become both exhausted and run down.
A third key factor was to accept that I was ill. It was important for me to accept that I was struggling because I was ill, rather than because I was weak. It was also important for me that others accepted this. Receiving the diagnosis from my GP and also having it confirmed by a specialist team at the hospital was definitely a turning point.
I felt the first hint of recovery in the early spring of 2017 after receiving regular psychomotor physiotherapy for a while. When your body has been in a state of emergency for such a long time, you forget how your body should feel when it is well. How do you make your way back to a healthy body when you have forgotten what a healthy body is like? That’s what the psychomotor physiotherapist helped me remember. I was given a compass to navigate by.
What finally set me completely free from the illness, was the techniques I learnt through the Lightning Process (LP). LP is a mental training programme where you learn some highly effective techniques for reprogramming your body so that it no longer follows undesirable response patterns.
When I was ill, my body reacted to the slightest strain by initiating immune responses. Every time I did something that my body perceived as a strain, it might respond with a high temperature, a swollen and sore throat, pain, visual disturbances, intense pins and needles, nausea, dizziness, a high pulse and much more.
If one imagines that the body can get stuck in an unnatural and constant state of emergency, such responses can be thought of as signal errors. The body believes there is danger at foot when there is none. In the LP training programme you learn techniques for making the body break its habit of sending signal errors, so that the body can get onto a better and more useful track. This is not about disregarding symptoms! It is about teaching your body to switch to a better track, to enter a different and more beneficial state.
The LP course gave me a marvellous boost, and I noticed fantastic improvement in a very short time. Some responses vanished the same day, while other patterns needed work over time. Fortunately, you are given six months close follow-up as part of the course, and you also receive a lot of support and learn a lot from being with the other course participants. This was pivotal in my process and progress.
My most important guideline now is joy. You can be clever in all sorts of ways, stop doing things that are not good for you, or keep practicing things that are useful. Eat healthy food, be positive, exercise, rest, aiming for perfection. However, I have found that my most powerful tool is to fill every day with as much joy as possible. Really focus on that, do it actively. I will write LOTS about this in the time ahead!
Wow, I am well!
So, I finally recovered. At the end of November 2017 I definitely felt that I had recovered. I was still somewhat reduced and far from in peak condition, but I noticed that a major change had taken place, a very noticeable change in my body. It struck me: “Wow, I am well!”
How did I know that I no longer had CFS/ME?
Because I felt a total peace in my body. I was no longer in any pain, and there was no adrenaline rush. Besides, my body had stopped sending out negative responses to activity. I could do whatever I wanted without getting ill afterwards. I was no longer punished for being active.
At last it was possible to exercise and become stronger. Slowly, but surely. This is where I am at today. I exercise, and it is going REALLY WELL! I am working full time again and can do whatever I want to do.
This text is taken from Monica’s blog and was first published (in Norwegian) in April 2018. Read here