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I had to go down a long way before I could start pulling myself back up, but thank heavens for that! Having experienced my absolute rock bottom, I am now in touch with aspects of myself and life in general that I would otherwise not have known, and I have gained a perspective that makes me appreciate life so much more.
My illness developed over a period of several years. In the first few years, starting around 2007 when I was fourteen, I gradually started reducing my activity levels because of fatigue and frequent respiratory infections. I spent a lot of time awake at night, playing internet games and chatting, so naturally I felt pretty exhausted when it was time to get up and go to school. Colds, bronchitis and whooping cough followed one after the other. I had been active in sports such as martial arts and orienteering, but gradually I became less and less involved and I had to give these up in the end.
Recurring colds and tiredness
I had always been at the top of my class without making a lot of effort but in 2009, in my second year of upper secondary school, I got a place at an international school abroad and no longer found myself in the top echelon. As I had always identified with my intelligence and good grades, suddenly finding I was not among the best anymore was a real setback for me.
My bad sleeping habits stayed the same, and I was constantly walking about in a stupor – bone tired and with frequent colds. Consequently I was absent from school a lot and didn’t take much part in after-school activities. In my last year of upper secondary school, I had a bout of mononucleosis and was told it was normal to feel off-colour for quite a while afterwards.
The year after I left school I felt run-down, I was huffing and puffing and feeling faint even on light walks. I found these symptoms unpleasant in themselves, not least because they were so uncontrollable and unpredictable. Gradually, any exertions would result in acute reactions akin to having low blood sugar levels, such as suddenly feeling unwell and shaky, having to lie down in bed and rest to make it go away. It was often so bad that I had to throw up. I tried to get fit and exercise but it felt like knocking my head against a brick wall.
As I worried about these physical reactions, I tried to exert myself less and less – not that it did much good
As I worried about these physical reactions, I tried to exert myself less and less – not that it did much good. Further symptoms developed, like feeling dizzy from low blood pressure when standing up, so that I generally found a chair to sit in, rather than having to stand. I did not have a lot of energy and found it quite a strain having to carry out daily chores; cleaning, doing the laundry, shopping, going to lectures and studying.
Things started to pile up, both figuratively speaking like in my studies, and quite literally in piles of laundry and dust bunnies, and my best method for getting anything done at all was to make an all-out effort on the rare occasions when I felt a little spark of energy, or a deadline or an exam came painfully close. “How else will I be able to get anything done at all?” I thought. Afterwards, I felt really reduced and tired.
Playing the “health detective”
I thought there had to be something obviously wrong with my body, as I was feeling so weak. I went to the doctor about my symptoms, without getting anywhere. Now I became very keen on health issues and read up about nutrition and tried every possible angle, without getting anywhere at all. Vitamins, minerals and general supplements, probiotics, eating more of some foods and cutting down on others, eliminating some foodstuffs, and so on. I felt I had to be very careful about what I ingested, and avoid anything ‘toxic’: environmental poisons, additives, sugar, chemicals in cosmetics and plastics, and all that. Gradually my metabolism also slowed down, and when I found this out from some broad-spectrum blood tests my GP ordered, I was convinced that finding the appropriate medication was what I needed to get my energy and strength back and to get rid of all these unpleasant symptoms. However, no combination or dose of medicines made any difference to my overall health and sense of wellbeing.
My condition was so confusing, incomprehensible and frightening. After three years at university I could not cope anymore, so I felt I had better try to work instead. However, I was not capable of working full time, and I found it was difficult for me to carry out the assignments in the part time jobs I had.
I was convinced there was something biologically wrong with my body
I was convinced there was something biologically wrong with my body such as a problem with the ATP-production in the mitochondria, or that I would find there was a genetic flaw, or my gut flora, or perhaps some autoimmune disease that could be helped by various ‘protocols’, or that I suffered from some undetected infection, or … and so on and so forth. I took on the role of a ‘health detective’, meticulously charting my symptoms and my state of health, looking for patterns in this chaos. I believed this was a rational and effective way of relating to my issues, despite never achieving any significant or lasting improvement. Despite all this, I carried on as usual; my health gradually deteriorating, and becoming ever more isolated and passive. Only in retrospect can I see how this strategy was actually part of the problem.
Only in retrospect can I see how this strategy was actually part of the problem.
Nosedive into the basement
The turning point came in 2017. My partner and I had moved to a new place, we had bought a house together and I had started in a new part time job. I felt stretched and stressed out with all the efforts this entailed and my exhaustion just grew and grew. I was exhausted all day and night and all I wanted was to lie down. I no longer had any normal days. I suffered through every day, just waiting for this day also to pass, I slept in the common room in the lunch break, almost fell asleep in the car on my way home, feeling gradually weaker and more and more ill, but kept pushing on. At the end of June, I had exerted myself so hard that I could not take another day, and got a sick note from my doctor.
At this point in time, simply leaving the house seemed like an unsurmountable task. Going for a walk was out of the question. If I did a load of laundry or washed my hair, that was it for the day, and I had to go and lie down for the rest of the day.
The sum total of all the exertions had reached breaking point and I had taken a nose dive into rock bottom. And even so, it felt like a load had been lifted off my shoulders. There was no use in pretending anymore, of keeping up appearances or maintaining the illusion that I could deal with it all, because it was abundantly clear that I could not. I explained the symptoms I had, and my father mentioned that this sounded like something he had heard about, called the ME/chronic fatigue syndrome.
Looking for a cure
We went through loads of research papers and read a lot about the various trials into biological explanation models. I was put on a waiting list for a full examination for ME at the St. Olav hospital. I did not hold out much hope of getting better.
Most of the search ‘hits’ came up with pacing and rest.
Meanwhile, I read and googled about this, that and the other. Most ‘hits’ came up with pacing and rest, and also viruses and biomarkers and cancer medication. There was also something called the “Lightening Process” (LP), but that sounded a bit weird. I couldn’t see at the time what it was or how it could possibly help. But then I googled “cfs recovery” and the first thing I came across was the website “CFS Unravelled”. This is a compilation of recovery histories from near and far, put together by the Australian Dan Neuffer. A former ME patient himself, he now works to help others suffering from ME/CFS and other related conditions such as fibromyalgia and chemical hypersensitivity.
A new angle
This webpage provided a clear overview of an approach that was new to me:
- It is possible to recover from ME
- “Treating” all the physical symptoms of ME does not explain why this condition developed in the first place
- In order to get well again the underlying causes need to be understood
- The autonomous nervous system (ANS) regulates most of the systems in the body which are dysfunctional in the case of ME
- The nervous system has plasticity (neuroplasticity): the disadvantage is that this is what made it possible for you to respond to any activities and stress in a dysfunctional manner, whereas the advantage is that the nervous system can be trained to respond to activities and stress in new ways that will not induce sickness.
I purchased the programme that Dan created to help other ME/CFS sufferers get well again. It is called ANS REWIRE and is a teaching and coaching programme consisting of videos for you to watch online, and various tasks and techniques that takes you through the programme. It is the best buy I ever made in my whole life.
A brief summary of the contents of the programme:
- Tuition to obtain a better understanding about how and why ME can arise
- Mindfulness – meditation to practice how to accept thoughts and feelings in a non-judgemental and disengaged manner
- Practicing methods that will deflect your thoughts and awareness from focusing on symptoms and bodily conditions
- Practices that help change dysfunctional notions/conceptions that lead to negative trains of thought and responses
- Coaching to help the body heal itself, how to use the knowledge and methods, and to gradually increase the activity level
Well again within a year
Using the methods and coping strategies I learned from the videos that I watched, I got rid of 70% of my symptoms within two months, and 100% within a year. It was an incredible feeling to notice that for the first time ever I kept getting better and better, rather than more and more sick.
Among the activities I have undertaken in 2018 I can include winter skiing with tent and a sledge, I have climbed several mountains, I have hiked across Norway and I’ve taken up regular exercise but even so, it is not the sensation of physical achievements that have given me the biggest sense of improvement. That experience came in the summer of 2017, just after I had started the programme. I had ventured outside the house for a walk of no more than 150 metres along the beach where I lived and over to a headland where there was a patch of marshland where cloudberries grew. As if by miracle, I could do the entire walk without feeling exhausted and unwell the way I would have felt before.
As if by miracle, I could do the entire walk without feeling exhausted and unwell the way I would have felt before
Not long ago, I had not been able to walk there except at a snail’s pace, feeling so exhausted and drained that I could hardly make it back home again, and then having to lie down for the rest of the day. But now I employed the techniques I had learnt, and focussed on my surroundings and the act of actually picking cloudberries, instead of thinking stuff like “this is going to make me so exhausted”, or “oh no, I’m feeling dizzy and faint, I must sit down, this is not going well”. And – as if by miracle – I could walk the whole distance without feeling drained and ill the way I had before. “This is working!” I thought to myself – I was overjoyed and knew I had found the key to full recovery.
Even though both I and my father initially focussed on a classical biological explanation where the understanding is that there is a defect mechanism within the body, both my father and the rest of my family were very supportive when they heard I had started on a course of treatment that was more related to thoughts and feelings. They may have been a tad more reserved than me in my faith that this programme I had found would help me get completely well again, but I never let that interfere with my own conviction.
Turning my life around
In the latter half of 2017 I completed the ANS REWIRE programme, focussing on joy, hope and a rock-solid belief that I would get well again. I went for gradually longer walks, I started reading again after not being able to for so many years, I left a relationship of seven years that was no longer right for me and moved out of the house we had bought together. It was incredibly hard, turning my whole life around in such a short period of time, but I knew I had to take drastic measures if I were to achieve a drastic improvement.
My improvement happened so fast that when I finally turned up for my appointment at the hospital in November 2017, I had become so well that I no longer “qualified” for a diagnosis. Instead I had a really great chat with the doctor, I was smiling and beaming all the time, and she was clearly happy for me. She had not come across many success stories such as mine, and she was curious to learn what I had done and what the programme I’d taken consisted of.
The core of the illness
Now that I am well and no longer have a long menu of confusing and overwhelming symptoms to keep track of, it is easier for me to look back and spot the core of what caused me to become ill in the first place: an introspective focus, directed inwards on my own physical condition, rather than outward into the world. By having my focus trained on any danger or discomfort, I created a situation where the evidence for what I was worried about, was created by the worry itself.
By having my focus trained on any danger or discomfort, I created a situation where the evidence for what I was worried about, was created by the worry itself
I might have become well again by other means than this exact programme that I happened to come across, as other ME sufferers have recovered using methods that are called something else.
Similarities between the methods that work
I have later understood that the methods of the ANS REWIRE programme are very similar to the ones taught by the LP programme, except that instead of a few days of intensive training in the LP programme, the information in ANS REWIRE is spread out in daily videos that become available over the course of one month. You can go through them at your own speed, and replay the videos if you like. Dan goes through the causes, mechanisms and techniques very thoroughly, in a way that cuts through the brain fog. I wonder if maybe some of those patients that have had little or negative effect of the LP course might have benefited from a course structured more like the ANS REWIRE.
The common denominator for all the methods that lead to permanent improvement is the way they train our ability to take the focus away from our physical symptoms
I am convinced that the common denominator for all the methods that lead to permanent improvement is the way they train our ability to take the focus away from our physical symptoms, and reduce the activation of the stress response when faced with an overload. This training specifically leads to a reduction of symptoms because the brain forms new neural pathways that favours more favourable responses and diminishes the activity of the old, dysfunctional response patterns.
Responding to symptoms
The important thing to note is that the goal is not to remove the symptoms experienced but to change the way we react to the symptoms. This might seem like a contradiction at first, but it makes a significant difference. Symptoms are practically like gifts in this connection, as they give you an opportunity to respond in an appropriate manner. All people go through unpleasant feelings and physical sensations. What really matters is how we relate to our sensations, whether we focus on the threats and discomfort, or whether we choose not to trouble ourselves too much when we experience these thoughts and feelings, as we always have from time to time.
What really matters is how we relate to our sensations
Keeping or developing a keen focus on any danger or unpleasantness could lead people into a self-perpetuating process where your inner sense of danger and discomfort results in a continuous activation of the body’s stress response system, which in turn leads to more discomfort and symptoms that you notice and then worry about, again leading to further symptoms, and so on.
Keeping or developing a keen focus on any danger or unpleasantness could lead people into a self-perpetuating process
It may be easier to fall into such a negative spiral if you are already in a weakened state, e.g. because of prolonged stress, chronic illness, acute sickness or injury, chronic insomnia, or other physical conditions that take their toll on our bodies. However, it is never too late to reverse this process. The reward for your efforts is a whole new life.
This text was first published on the Facebook page of Recovery Norway in September 2018. Oda was 26 years old at the time.