Instead of feeling guilty and tired out, I feel confident to live my life – I know how to manage my emotions better

Hi – It’s Kate here, from the UK. I have always been a trier. I tried hard at school, at Uni, at work, at losing weight, at baking the best cakes, at being a good friend, at going above and beyond… you get the picture! I was always wired, always on the go, never having time and always stressed about it! When all this trying eventually caught up with me, I was working three jobs and volunteering on four teams at my church.

I had long Covid. I have fully recovered

It may seem like a miracle, as I went from being barely able to walk to the end of my street to running my usual 5k running route and 10 mile cycling route in the space of a week. I’m not as fit as I used to be, but confident I will now get back to where I was. (Just to put this into context) I was about to do the Edinburgh marathon when Covid hit, and had just finished a 60 mile bike ride when I caught Covid).

The best thing I have done is to say: no way will I accept that my daughter will just lie there and suffer indefinitely, without us being able to do anything

Anxiety. Fear of the future. Sorrow. Insecurity. About three years ago, I did not know much about what these words could mean. We went to Greece on autumn vacation as a regular family of five in September 2017. A week later we were no longer a regular family, we just did not know it ourselves yet.

My whole world and understanding of things had been turned upside down, in the best way possible

The basic summary of the cause of my illness is a familiar one. As far as I believe, the cause was burnout, plus the trigger of a nasty flu bug at the same time. From this I never properly recovered, and things quickly spiralled out of control. However, looking back at my life with hindsight, it is easy to see that there was already a foundation of issues which were affecting my health, and paving the way for a future illness.

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.

The symptoms often made me feel stressed and worried, as I saw them as a sign that something was wrong with my body

It is almost six years since I first detected that something was wrong with my body. My life was stable and generally happy back then; I had a partner, my studies, and a network of good people. For years, I had enjoyed working out and exercising, as it gave me a boost of energy and put me in a good mood, but now suddenly I seemed to get some sort of ‘hangover’ when I’d been exercising; feeling exhausted, getting a slight ‘brain fog’ and generally feeling irritable for up to a week after a training session.

Emil learnt to control his focus by himself, and then things improved very quickly

Today Emil is a happy 18-year-old. He is in his last year of upper secondary school and is active in sports, which also includes coaching younger athletes. He has passed his driving licence and found a girlfriend, and as for what we, his parents, say and think, he cares just about as much as he ought to. This hasn’t always been the situation, however.

To me ME is no great mystery

A lot of people associate me with football and the fact that I was considered one of Norway´s greatest talents. However, the most interesting thing about me today is that, because of my experiences, I am among those who are most knowledgeable about ME, chronic fatigue syndrome. This condition is often viewed as deeply mysterious. It’s not a great mystery at all to me.

Our daughter felt that she was more in control over her own situation, that she could now play an active part in her own recovery

Our daughter contracted ME when she was only ten years old. We vividly remember the despair we felt as parents; that her life was put on hold for one year; the worst-case scenario that she would become just another number in the queue at the national welfare center; a bedridden teenager hibernating behind blackout curtains in a dark bedroom. Luckily, we managed to find a way out of the nightmare.

I got my life back!

My body did not recover after infectious mononucleosis in 2006. At that time, I was only 16 years old. I got worse in 2018 and was on sick leave for long periods of time. In 2012, as a 22-year-old girl, I got the ME-diagnosis (serious degree)

This illness will last for a long time. And why is that? Because I am already prepared to die – inside

To Mammi…

The infection came suddenly – like a bolt og lightning out of the blue. The Chronic Fatigue Syndrome, however, came tiptoeing, slowly but surely. It came to take away from me everything you might call an identity. And it succeeded. In the end I was no longer myself. I “was” a fatigue syndrome.