“I was an ME patient for 23 years. I was in care. Today I can do anything I want, and I enjoy living my life”

I was ill for a whole chapter of my life, which I simply cannot bear to describe. But today I am well.

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Woman (62)

More than 20 years ago I was in my dream job in a public agency. Then one day my workplace underwent a big change process with reorganisation, effectiveness initiatives, new organisation chart, etc. I was appointed to another new and challenging job and threw myself into work. In my spare time I headed up a cultural initiative, also working to set up a nation-wide association for these activities. It was fun! In addition, I enrolled in a competence-improving evening class at a commercial university. All this while working in a full-time position. There was a lot of stress, but I managed the time juggling somehow.

In the autumn I experienced some episodes of heavy bleeding. I saw a gynaecologist and was prescribed medication to stop the bleeding. They also did a Pap test and found cell abnormalities that were so far advanced that treatment was required. To top it all I got food poisoning whilst I was also reading for my exams. I did sit my exam and passed with flying colours. 

Like a strike of lightening, I suddenly felt some really strong pins and needles in my hands and feet

Three weeks later, on a Sunday before Christmas, I was busy doing housework. Like a strike of lightening, I suddenly felt some really strong pins and needles in my hands and feet, and my sensitivity deteriorated considerably. I could not feel myself walking – it was like walking on paper, and I could not feel myself touching things. As I did not feel particularly ill I carried on with all my activities and neglected the symptoms, although they were pretty constant.   

Christmas Eve was celebrated with family, among them three of my nieces and nephews. We were happily unwrapping presents when a phone came that their grandfather had taken seriously ill and was dying. While their parents went to the hospital, I took the children home with me, where they were picked up late at night. Their grandfather passed away on Christmas day. At the funeral, my symptoms were so bad that I had to buy shoes with padded soles on my way home, to make walking less uncomfortable.

Later on I saw my GP. He did not put me on sick leave, but referred me to a neurologist. It was a nice winter’s day, and that evening I went for a walk with my neighbour. Along the way, I lost all strength in my legs, and could barely make it home. I actually walked past the ER on my way home! Next day I limped into work. I called my doctor, who put me on sick leave and told me to go home and relax. By now I was feeling really weak and unwell. After a while I could barely get around in the house.

Time had come to fix the cervix, as well. I told my doctor I was too unwell to have this procedure, but was told it could not be postponed, it was absolutely critical to have this operation as soon as possible. I needed help to get to the hospital, and the procedure was carried out. I felt half dead. Eventually I got to see a neurologist who could not find anything wrong. He told me that my GP suspected MS, but that he was confident it was not.

Afterwards I felt completely wiped out, exhausted and weak

The weeks passed. I became a regular at my GP’s surgery. I was diagnosed with anaemia, but the office forgot to tell me I had to take iron supplements, my blood count was low and my iron levels empty. My doctor thought this might explain my condition. I had to return to the hospital to do another operation as they had detected cell abnormalities in my uterus. This was done under narcosis. Everything turned out to be ok after all. Afterwards I felt completely wiped out, exhausted and weak. I had to crawl up the stairs from my bedroom. I needed help with my shopping, hardly consumed any food, and some days I got by on just some water as I was simply incapable of feeding myself.

I lived alone. If I had lived with somebody, they would probably sounded the alarm. But I was unable to explain how bad my condition actually was. I saw my GP frequently and every time I left his surgery, I was surprised that he did not send me to a hospital.  I remember thinking that it was neglectful not to provide proper care for somebody as sick as I was. At the end of March I was finally rushed to the neurological department. I was diagnosed with a mild case of polyradiculitis, the illness was in remission, and they expected me to be up and about quite soon. However, many of my symptoms did not fit in with this diagnosis, and the doctors thought it was psychological, as I had been through a very tough time. I disagreed; feeling that my ailments were physical. My psyche has always been strong.

I disagreed; feeling that my ailments were physical. My psyche has always been strong

I was on sick leave for a while longer and started working half time in May. I was better, but far from well. I was extremely thin, and my colleagues who had not seen me for a few months, were shocked. I could not walk properly, did not feel well, and was generally weak and feeble. I couldn’t walk to the bus. I drove to the bus terminal, and luckily the bus stop was close to my office.

I kept this up until the autumn, when I contracted a severe respiratory infection. I totally collapsed, and the symptoms I had in the spring returned in full force. I was exhausted and weak, sapped of any strength. I had problems concentrating, extreme headaches, and very noise sensitive etc. Ended up in bed and was off work for about six months. I was a regular at the doctor’s surgery, went through countless examinations to no avail.

I totally collapsed, and the symptoms I had in the spring returned in full force. I was exhausted and weak, sapped of any strength

Once more I recovered sufficiently to go back to work. Only for a short while, however, as I fell very ill again. I was admitted to the neurological unit. The doctors found nothing. I got an appointment with the physiotherapist, and here something happened. She wanted a recap of my whole medical history before she would treat me. She was pretty certain: “I think you suffer from ME; you must ask for an appointment to see Harald Nyland.”

This photo is taken after 23 years of ME. After that hiking outdoors is something quite special…

Neurologist Harald Nyland diagnosed me with ME, “serious degree” in the autumn of 1996. After this, I never got back to work again.

Back at the ward I got to see the doctor. I told her about my conversation with the physiotherapist. The doctor got furious! Then she discharged me, having diagnosed me with Chronic Neurasthenia Syndrome. No explanation of what this was, or how to handle it. Just a diagnosis on paper, out and home. The physiotherapist had written a note to Nyland. I asked for a referral to the clinic. Neurologist Harald Nyland diagnosed me with ME, “serious degree” in the autumn of 1996. After this, I never got back to work again.

A whole chapter

My illness covers a whole chapter of my life which I simply cannot face describing. Let me just briefly say that I was away from any form of working and social life and lived with all the symptoms common to the ME (yes, I did also meet the Canada criteria for CFS/ME).

Change

By the late summer of 2017 I was about as low as you can get, physically and mentally. Lately, a thought had been popping up ever more frequently. My last chance would be to take a course in LP. There was a saying I had heard from the ME community spinning around on repeat in my head: “Live Landmark says she can get anybody with ME out of bed”.

When I was in a care home in the summer of 2017, I had a visit from one of my best friends. She told me “if there is anything I can do for you, please let me know. I will do anything.” I took her word for it and gave her Live Landmark’s name and asked her to call. This was done, but even so I hesitated for a few weeks before sending off a written application. I wrote her not to call me, I was not able to speak on the phone. I had not done so for years.

After two days the phone rang in the afternoon. I did not pick up. Then a text ticked in. “Hi Gunvor! I have tried calling you. When are you available? Smile Live.” I was not able to answer. Then the phone rang again. It was Live. The first thing I said to her was: “I cannot speak on the phone, have you not read my application?” I was in a bad mood and upset. She just kept talking and we spoke for 45 minutes. Then – incredibly – after just 45 minutes I had become absolutely convinced that this would work out. A certainty crept into my mind: I was going to get well again!

She just kept talking and we spoke for 45 minutes. Then – incredibly – after just 45 minutes I had become absolutely convinced that this would work out. A certainty crept into my mind: I was going to get well again!

As soon as we hung up, I got up from bed, put my feet on the floor and tottered to the bathroom. It was wonderful! I had not sat on that loo for years. I relished it! Afterwards I went into the room next door and looked into the garden. It was magic! I felt a joy I cannot describe. I felt elated.

When the home care nurse arrived, I was in the best of moods. They would normally push me in a wheelchair into my bedroom for the night. I had a daybed and a night bed. Now I wanted to walk, something they had not witnessed for two years. I also texted my friend who had contacted Live and asked her to call whenever she liked. She phoned me at half past ten and was amazed to hear me ask her to come over asap and to book plane tickets and hotel room in Oslo. I never doubted for a second that I would be able to go through with this.

On the next day I got out of bed, took a shower and wore normal clothes. I had a personal assistant, so I had a bit of help. It was a nice summer’s day, and I wanted to get into the sun! A garden chair was found, and this little lady went into the garden. My assistant took a photo which she sent to Live and my family with the following text:  “Sitting in the sun, enjoying the last day of summer”. Up until this day I had been lying in a darkened room. My family was very surprised, putting it mildly, and I got the following text from Live: “Golly! Well done! Smiling”.    

Every day before the course only got better and better, and the knowledge that I was going to get well embodied itself in every cell. I was not worried about the flight to Oslo, I was looking forward to it like a child!  I had some wheelchair assistance at the airport, but I walked from the train station to the hotel. It took me some time and it was tiring. Not so strange, after all I had almost never been on my feet for the past two years, and hardly had any muscles left. I was not afraid though, simply very pleased with everything I accomplished! I also went on public transport whilst in Oslo, and walked to and fro.   

At the end of my first day at the course I had arranged to meet three family members for dinner! We spent hours in a noisy restaurant enjoying ourselves. I felt really good, it was all fantastic! By then I had travelled to Oslo by plane the previous day, travelled into town on the train, walked to the hotel, walked to and from the station, spent four hours in a training course, sitting on a chair together with 10 others, been shopping in a couple of stores, and now sitting in a noisy restaurant having a great time. I rocked! I felt brilliant! Only a month earlier I was a patient that needing nursing….

I rocked! I felt brilliant! Only a month earlier I was a patient that needing nursing

The following two days of the course felt like a treat – I was super motivated and totally focussed, absorbing everything Live said. Once the course was over for the day, I went out shopping, dined out, etc. No way did I want to sit and rest in my hotel room … I had begun living again! Everything was a joy – I was delighted to be out and about and being active!

The problem was that unused as I was to any physical activity, my leg muscles were not ready for this sudden burst of activity. My legs became rather swollen and I had problems walking. Things came to a halt … I had to slow things down a bit. Back home again I got in touch with the physiotherapist who immediately set up a schedule of home visits, teaching me proper walking techniques, balancing exercises, strength training etc. They lent me an under-arm stroller which I used for a couple of weeks. After a while she sent me to a physiotherapy clinic which helped me with the further physical training.  I progressed enormously fast, there was no need to worry about being too active. In a way I had reprogrammed my brain from sick to well again! I was super proud of myself and totally focussed. I started driving my car again, and really saw myself as well. I FELT WELL AND I WAS HEALTHY! The whole thing was magic, I felt almost superhuman!

My GP, who had seen me through all my years as sick, was delighted and very impressed!

I remember telling people that ME was history – I would never get ill again! I was adamant! My GP, who had seen me through all my years as sick, was delighted and very impressed! He indicated I would need a year of training before my muscles would be tip top again, and told me to eat a lot of protein. We agreed that I would wait a few months before we started weaning me off my medicines, and then slowly cut back, 1 pill less per month. I had been prescribed considerable quantities of pills for nerve pains, and also took happy pills and sleeping tablets.   

I did experience some setbacks and strains from too much walking and knitting. I had serious difficulty turning over in bed … but it passed. I had personal assistants and home nurses when I was ill. The community care nurses stopped coming right away after the course. I told my assistants I no longer needed them, and they should look for a new job. They did stay on for a while after the course, though. I was extraordinarily pleased with myself and enjoyed life in all ways. Being active and able to do exactly what I wanted without any thoughts of consequences was marvellous. My old mental patterns had been deleted from the hard disk.

My GP was right, I did need a full year to train myself back into shape with good working muscles. One year after the LP course I climbed a high mountain; three hours, 400 meters, even some rock climbing.  Only five days later I suddenly took terribly ill, with some strange symptoms in my back, extreme headache, severe shivers and vomiting. I was petrified! My first thought was that I had contracted ME again. One of my neighbours rushed over and after half an hour she called for an ambulance. I was taken directly to the hospital. A CT scan of my brain followed. After just a few minutes the doctor came back in and said they had found a cerebral haemorrhage! My reaction probably seemed utterly absurd to her… I was simply so very relieved and happy.  “I am so happy you found something”, I said – I had not caught ME again.

Only five days later I suddenly took terribly ill, with some strange symptoms in my back, extreme headache, severe shivers and vomiting. I was petrified!

The time that followed was hard though. I had to be mindful of the haemorrhage and not overexert myself. I suffered a lot of headaches and sense of tiredness, and naturally did not feel too well. This started the fretting again. This reminded me of the ME. I felt scared and begun checking myself for symptoms that I could recognise … not good! I kept this up for a few weeks, and then suddenly I plunged into total exhaustion and bedrest. During this whole period I had been in contact with Live several times. I now got urgently back in touch. She guided me back into safety and the certainty that I was recovered from the ME, and I got back on my feet really fast, within the hour, in fact!

Two years have passed since the LP course, and what a wonderful time it has been. I have done lots of travelling, to Spain, to Trondheim, to Oslo, to the south coast of Norway. I have spent a lot of time with my family. Babysitting. Hiking in the woods. Climbing mountains. I can do anything I want whenever I want to, and I love living my life.

AdultsFemaleVery severe ME/CFSChronic painFunctional paralysisLightning process