«From having to sit in a wheelchair, I can now be active again and go training»

I have always been a girl who enjoyed being active. I went to the US for a year after high school and worked as an au pair. When I came back home in the summer of 2016 it only took me a couple of weeks before I started working again. For almost three months I even had two jobs.

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Vilde Thorsen

January of 2017 was pretty good. I really enjoyed my job at the after-school day-care programme and got a lot of temping jobs as a school assistant. I would usually go straight from work to the gym where I was lifting weights to build muscle. I also enjoyed skiing with my dog when the weather was good. In other words, I was really active and enjoyed doing things.

In February I caught a light cold which lasted for about a week. I still felt a bit sluggish afterwards, but didn’t think much about it at first, so I went back to work. My first training session in the gym after my cold was not very good. I could barely lift 5 kg in one of the exercises where I would normally be able lift 10 kg easily.

This made me feel very unhappy. Exercise was really important to me. It was something that I looked forward to all day. I thought the next time would be better, but it was actually even worse than the previous session. And so it continued. I simply refused to think that I might not be entirely well.

This made me feel very unhappy. Exercise was really important to me. It was something that I looked forward to all day.

Slowly, but surely I had to scale down my fitness regimen. I carried on working and took walks, as this was not so strenuous. Gradually though, my condition worsened, and on my last day at work before the summer holidays I was so run-down that I collapsed at work. I was told to relax over the holidays and that I’d probably feel a lot better in the autumn. I was simply a little overworked. But when the autumn came and I still did not feel like my old self, I made the decision to work only at the after-school programme, which meant a 45% position. By now my doctor had started thinking she would have me assessed for ME.

My doctor was a very important support person through everything that happened. She never gave up hope that one day I would be well again.

I count myself as one of the lucky ones when it comes to my doctor.  She has been very understanding and supportive. She helped me though it all. She was a very important person throughout everything that happened. She was very honest in that they did not really know what ME was, or what it might take to get well again, but she never gave up hope that one day I would be well again. My doctor was keen that I should go through a thorough examination, which meant going to a hospital in another town where they would be able to diagnose me. This was not scheduled until December.

In the interim my condition deteriorated. I was no longer able to climb the stairs at work and completely depended on the lift. My parents had to fetch me from work every single day. My life consisted only of working and sleeping. Finally the time arrived, and I could go with my father to the hospital to be examined. A long and tiring week later, I could finally return home. I had ME.

I was completely exhausted from the hospital visit and my condition was worse now than before we went.

I was completely exhausted from the hospital visit and my condition was worse now than before we went. I was on sick-leave from work and spent my days at home in bed or on the sofa, either sleeping or watching TV. I had to plan when to take a shower, and I no longer had any energy left for personal hygiene. At one point I was so tired that I was not even able to drive. My family had to take me to my doctor’s appointments and other things. At this time I had been given prescription nutritional drinks because I was so poorly that I was not longer able to eat properly.

And so my life continued with a lot of ups and downs. I only left the house when I was feeling comparatively fine, and people who did not know me very well often thought I was better when they saw me outside the house. Throughout 2018 my mother tried to find various ways for me to get better again. We had looked a little into something called LP training courses, but had not given it serious consideration as so many people said it just made them worse and that it was a lot of rubbish.

Many people said they got worse and that LP was just rubbish.

In September 2018 I had been scheduled for a three-week rehabilitation period at a hospital. I was looking forward to this because rehabilitation was supposed to make you better. I thought the doctors there would teach me lots of stuff, and that when I came back home I would be able to begin to live a little again. However, when I got there I was instructed not to overdo things, and that I was there so I could learn to live with this so-called illness. I would never become well again, but I might recover sufficiently to lead a good life. They told me not to spend more than 70% of my energy, and that it was important to listen to my body. In the end I had to go back home half a week before the stay was over. I had become really unwell again. Much worse than when I arrived.

I had become really unwell again. Much worse than when I arrived. Being told by these so-called experts that I would never be well again did something to me. I began to believe them.

Being told by these so-called experts that I would never be well again did something to me. I began to believe them. I had kept my hope up for so long, but now I noticed how it slowly began fade. When they tell me I am sick and will never recover, then it must be true.

I was in bed for months after my hospital stay, wearing headphones even when I was not watching series on my iPad, Simply because there was too much noise when mum and dad were cooking or chatting. All my friends were at the gym, partying, hiking or studying, just like normal 21 year olds. I felt very alone.

Then in March 2019 we thought we would read a book called “Wake me up when it’s over” written by a woman named Live Landmark. She held these so-called LP courses in Oslo since recovering from ME herself. I still had my reservations about it as we had been told this was nothing but a hoax. All the same, simply reading the book couldn’t do any harm. After my mother had finished reading for me I was left with a strong impression. Live had been through the same things that I had and was fully recovered today. It sounded fantastic. Even so, I waited all the time until May before taking this LP course in Oslo.

Before I travelled to take the course I told my wonderful GP about it, and she was very supportive of my decision to go. The flight over was absolutely dreadful. Everything was uncomfortable. I was wearing sunglasses as I was very light-sensitive. I was also wearing noise-cancelling headphones as I could not handle a lot of noise. I almost wanted to cancel; the trip seemed like an unsurmountable challenge. Right before the course I was sitting with my mother and feeling terribly unwell.

27-29th May are three days that changed my life completely. After my first day at the training course, I could feel this energy within me. It was a strange feeling that I had not had in many years. We did a lot of shopping and walking about. After the second day, I felt even more energised. We walked a lot that day, too. And then my last day at the course was completed and my energy levels were even higher than the first two days. The flight home was brilliant. We did lots of walking at the airport and the headset and sunglasses had come off. All the discomfort I had felt over the past few years was completely gone. My hopes were back.

All the discomfort I had felt over the past few years was all gone. I had regained hope.

I could do so much more now. I could feel my energy returning, slowly but surely. At the start of autumn in 2019 I was feeling restless. I had almost had too little to do during the summer. In the autumn I gradually tried getting back to work again, and I am back at the gym lifting weights as I used to before. I have been given my life back. In January I was finally able to start studying and I couldn’t be happier. I have changed from at one point having to use a wheelchair when we went on holiday to being active and training now. My mother is almost unable to keep up with me when we are out walking.

The LP-course and Live Landmark reopened the doors to my life again. It has been a lot of work and there is work still do be done, but it is totally worth it considering I now feel like a normal 23-year old. I am WELL.

Children and adolescentsAdultsFemaleSevere ME/CFSME/CFSLightning process

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