I was a mother with ME and two children sick with ME – There is hope!

I wish someone would have given me the knowledge that I have today, that someone would have normalised my condition 13 years ago and said: “You’ll be fine. We have a support network that will help you get back on your feet.” Instead, I was left alone, left to stumble through an overwhelming amount of advice on what to do when you’re a CFS/ME sufferer. It cost me 13 years of my life and my children missed out on their teenage years. At this conference organised by Catosenteret rehabilitation centre, Anette tells her story. It’s a story that touched many people.

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Anette Veisten Lie

This text is a translation of the lecture given in the video above. The lecture was in Norwegian.

My name is Anette. I’m a paediatric nurse and soon I’ll be a certified NLP life coach. I work in a clinic for children and young people at Akershus University Hospital (Ahus). I’m a board member of Recovery Norway, and I write a blog about our journey to recovery.

My story started 13 years ago. I was an active 27-year old with two young children. I was working full time and leading a pretty normal life. Then, I started to feel unwell. It was the start of a nightmare I thought would be the end of me. I was constantly tired. My body was aching with flu-like symptoms, I had a headache and quite severe cognitive impairment.

In the healthcare system, I was passed around from one doctor to another. Nobody could tell me why I was feeling so ill. The only thing they did know was that it was not a mental illness. I continued to work. As I had no answers as to why my body didn’t function, I had to try and go on.

Then one day I collapsed. I was paralysed in one side of my body and face. I was admitted to hospital, in a ward for stroke patients. Later they moved me to the neurological department where they were sure that I was suffering from MS. However, the tests were negative. I was told to go home. There was no follow-up and no one to help me move on. I remember the looks the doctors gave me. A haughty eye-rolling, we-don’t-believe-you look.

I was on sick leave for two years before being examined again. Then I was diagnosed with ME by two different ME specialists who applied the Canada criteria. The last thing they said to me was: “I’m sorry, but there’s no cure for ME. The best thing you can do is to try and cope with your situation.

The last thing they said to me was: “I’m sorry, but there’s no cure for ME. The best thing you can do is to try and cope with your situation.

For the next 11 years, I was confined to my bed for 15-20 hours a day. I was racked with pain and a constant fatigue that wouldn’t let go. Sound and light became my worst enemies and I don’t know how many times I wanted to die. I could hardly follow up the kids, I had no social life or visitors. Life as I’d known it was gone, I lost touch with friends and with myself. The ME diagnosis explained why I felt a need to rest all the time. Doctors, the ME association and various ME internet fora all prescribed balancing rest and activity, and to never do more than 60% of my capability. 

Looking back at all these years, it is frightening to realise that from the outset of the diagnosis, I had no hope of ever recovering. I had to realise that life as I knew it, was over. Acceptance was the best way of coping the best I could.

“Acceptance?” Does it mean to accept that you’ll never recover, or to accept that you’re ill now, but you won’t be forever? Realistically, there is currently no medicine that will cure you. Yet, this is what I was waiting for; for biomedical research to solve the puzzle and give me the treatment I needed. There’s still no such treatment. For 13 years, I waited in vain for it. Is it realistic to keep on waiting? Personally, it deprived me of all hope. I was absolutely convinced that I was suffering from a physical illness, because all my symptoms were so strong. I got ME and I had to live with it. Whenever I read about people who had recovered, I thought that they did not have real ME, but another type of mental disorder. I believed that Live Landmark and the Lightning process were both brainwashing. I read about Recovery Norway members who had recovered and shared their stories. And I thought: “If these people recovered by using their mind power, they were not afflicted by the same illness as me”. 

Whenever I read about people who had recovered, I thought that they did not have real ME, but another type of mental disorder.

Based on the information published on the ME fora that I was following, I was convinced there was something physically wrong with my body and that only medicine could save me from this hell I was living in. There was an incredible amount of published research on minor biological findings in ME patients that supported my belief.

And I had many of the symptoms: “Coin roll” blood cells, thick blood obstructing the movement of oxygen, PEM (Post-Exertional Malaise), a proven temperature, swollen glands, sore throat, low blood pressure POTS, high lactate levels (blood sugar) in the blood after light exercise. Today, all these biological changes have gone, without any form of medicine.

Now I can clearly see that the conviction that there was something physically wrong with me sustained the illness. I spent my days adapting and planning my schedule around my periods of rest. This is what you learn to do to keep the illness at bay, and not deteriorate.

Now I can clearly see that the conviction that there was something physically wrong with me sustained the illness.

What turned my situation around, was that life presented me with another challenge. Seven years ago, my son, who was 14 at the time, started experiencing fatigue, insomnia, aches and pains and concentration difficulties.  He struggled through lower secondary school, but upper secondary school became difficult. He was functioning at about 50 % of his normal level.

Three years after my son got ME, my 13-year-old daughter started to show the same symptoms, and her illness escalated quickly. She was examined and diagnosed with ME. Again, we were left to our own devices. As a mother disabled with the same illness, I had to look after my daughter who was getting gradually worse. My husband had to juggle his job with caring for three sick people at home. It was an extremely stressful situation and there was hardly any help or support to be had from the healthcare authorities. My daughter was too unwell to go to the GP, but not sick enough to be admitted to hospital.

We felt that no one understood what we were struggling with, not even our GP. Instead, he sent a notification of concern to the child welfare authorities stating that my daughter didn’t look ill, and that he could not understand why she wasn’t at school.

We had now touched bottom. We were terrified. Were we going to lose our children?  

We had now touched bottom. We were terrified. Were we going to lose our children? I cannot comprehend how a system whose job it is to help families in a crisis, could act like this. We felt mistrusted, accused of having fabricated our own children’s illnesses. In frustration we asked other doctors for advice, as Viktoria’s condition was deteriorating. We were told to step up our efforts to protect her, to help her rest and reduce her activity level even more. We had to hold her back, or she would get even worse. We kept trying to shield her from everything, but in the end, she was so sick that all she could do was to stay in bed in a dark room. She could no longer move or talk. She needed a central venous catheter (CVC) to prevent her from becoming malnourished. I plunged into a bottomless sorrow that I could see no end to. We were physically ill, and we had to wait for years for research to come up with a medicine. I saw my daughter’s life vanish before my eyes. Knowing that your child will have to live through the same nightmare that you have had for the last 13 years, was inhuman. It was too hard to handle. When would it end?

At the worst point, I realised that the way we were treating her was not helpful at all. The next step might be that she stopped breathing, and I would lose her forever. I see now that the way I behaved around my daughter, how I did everything to make her well, in fact sustained her illness. We were always asking her questions such as: “How was your sleep?” “Are you in pain?“, “What can I do to ease the pain?”, “Can you stand a little bit of noise, can you talk a bit?”. This made her constantly think about how she was feeling, to check her symptoms, feel the pain. When I realised this, I felt like the worst mother in the world. I felt so guilty and, throughout the process, I had to make some tough choices. But I had to trust that I did what I thought was best for her.

I see now that the way I behaved around my daughter, how I did everything to make her well, in fact sustained her illness. But I had to trust that I did what I thought was best for her.

I now had to look in a different direction, admit that what we were doing wasn’t helping, and dare to try something new. I downloaded Live Landmark’s book” Vekk meg når det er over” (wake me up when it is over) and I realised that it is possible to reverse this illness. The book instilled a hope and a belief in me that I could take control of my own situation and my own health and that I could recover. In November 2017, I signed up for a Lighting Process course and started applying the techniques I learnt.

The changes in my daughter were apparent after only a few weeks. At the same time, my own symptoms were starting to let go. Using the tools I had been given, I stopped thinking about her as seriously ill. Instead, I thought about how she was caught up in an ongoing stress response and a behaviour pattern that we had to help her out of. 

We changed the way we looked at the illness completely and started to believe that this was something we could handle.

We stopped focusing on her symptoms and on relieving her of them and instead started focusing on what she could do, and on any good feelings she had. We agreed that she should not stay in a negative spiral alone but tell us about it and accept help to turn it around. We applied the principle of “here and now”, of being present in the moment throughout the day and never think about the next hour, day or the future. We had to believe that the path would reveal itself as we travelled, and that every hour brought us closer to the goal. We changed the way we were looking at the illness completely and started to believe that this was something we could handle. We focused on every little thing we had to be grateful for, and on what we were looking forward to the next day.

After a month, we started to do some light exercises: Five minutes on the treadmill every day. To begin with, she vomited every time afterwards. The main thing was to NORMALISE the situation! It’s normal that it’s hard to start exercising after a whole year in bed. It’s normal for the stomach to get upset after having had only intravenous liquid and very little food. It’s normal that being surrounded by a lot of people can be a bit much to start with.

The main thing was to NORMALISE the situation!

We had to practise doing everything again; practise eating, practise moving, practise being out among people. Six months after I completed the LP course, my life was starting to return to me. Viktoria completed the LP course in May 2018 and has now recovered, just like her brother.

Our story is not the only one. I know many people who have recovered, but what is scary, is that, often, we are not heard. Very often, we get comments saying that if we recovered, we must have had some other illness than ME. Twice, I’ve been reported to the child welfare authorities by anonymous people who believe I’m brainwashing my children by letting them take the LP course. I’ve been open about how we fell ill and how we recovered, but this has not always been well received. There’s enormous resistance towards the idea of recovering through mental techniques. 

It’s been a year since we started living again, but that does not mean that every day runs smoothly, that we’re living like we used to…because we don’t. We’ve had to change the way we live in many ways. We’ve had to be consistent and make sure that the choices we make in life are good for us, that it’s ok to say no and that perfectionism has no place in our lives anymore.

Then we have all the challenges, that are a part of life.

It is, of course, fantastic that we have recovered, but the journey back to life was harder than I imagined. The first six months after the LP course felt like going from hell to heaven. Then we have all the challenges, that are a part of life.

How can you reintegrate into society after a long-term illness? How can you fit in with your friends? How can you follow the curriculum that has been set? For young long-term sufferers, this is often a challenge. They have missed out on education, they have lost their friends. While lying in their dark rooms, they have gone from being children to teenagers.

I have talked to many teenagers who have recovered from ME. They say the same as my children: “We no longer fit in anywhere“. They carry with them an experience that has made them so mature and reflective, yet they lack life experience.

If you ask people with CFS/ME or other fatigue disorders if they believe they will recover and how, I think you will get many different answers. The support system they have, and what their doctors tell them at the outset of the illness, may be crucial for their future.

What the doctors tell them at the outset of the illness may be crucial for their future.

Working as a nurse in a clinic for children and young people at Ahus, I see that we’re facing increasing challenges related to children and young people who are hospitalised with various fatigue and pain-related disorders that we don’t know the physiological reason for. Nor are the Adolescents’ Psychiatric Polyclinic Services (BUP) likely to be able to provide us with any clear answers about what these patients are suffering from. It means we are faced with a group of young people who, at the outset of their lives, have a body working against them. They are afraid, and their parents are afraid, of what will happen next. How can I be my old self again? To be honest, and in light of my own experiences, I believe that not enough is being done for these patients! Are health professionals reluctant to give them a real hope of recovering?

is: “Yes there is”. But there are many ways of gambling with your own life, where you risk being stuck with illness! If you find yourself where we were at the start, with a GP telling you that: “Sorry, there’s no cure“, I’m afraid the answer is NO.

But if you come across a GP telling you about all those who have recovered, and that NORMALISES your conditions, then the answer is YES. I believe that it makes a huge difference how these patients are met, and that this difference is crucial for the future life of the patients that YOU meet.

This talk was held at a conference organised by Catosenteret rehabilitation centre on 27 May 2019.

Children and adolescentsAdultsFemaleParentsVery severe ME/CFSSevere ME/CFSME/CFSLightning processFilm/videoLectures

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.