For more than 20 years I have been listening to people, thinking along with them and giving advice about possibilities. Setting up my own coaching practice was a logical next step. I found that thrilling, but I was also very excited. Until life decided otherwise…

It took me quite a while to gather the courage to start for myself. I think it's a bit much to give up the security of a paid job for the uncertainty of being self-employed. But what I wanted was only possible with my own practice. After a year of 'test running', the results were very good. In short, I was ready!

Then I got sick.

I am one of the few people who quickly suspected what it could be. Thanks to an acquaintance with ME, I recognised my own symptoms. This is how I almost immediately came to a good ME specialist. After a thorough investigation, it confirmed my suspicion: “This is the classic story of someone with CFS.” I will never forget the date: December 9, 2015. The day my world crashed.

The specialist said: “We can hardly do anything for you. You have to learn to live with it”. I had no idea how to 'learn to live' with it. How do you go on with a disease that turns your whole life upside down? What should you do if nothing is the way it used to be? Where do you start if you can't even do your own household anymore?

I was distraught.

I have tried medication and treatments in consultation with the specialist. Both did little. Then I had to figure everything out on my own. That path was long and lonely. Fortunately, I am someone who can persevere if necessary!

I had read that if you intervene early, you have a greater chance of recovery. From what I read I had about three years to find 'my solution'. I clung to that. Meanwhile my life went on; I had no space for mourning, because I had only one goal: to recover!

After three years nothing had changed. Despite all my efforts, I was still as sick as I was at the beginning. All my time, my money, and my energy had come to nothing. All I could say was that I had done everything in my power. But it hadn't helped a bit.

Then came the blow.

Suddenly my situation came in full force. I am chronically ill and will remain so for the rest of my life. I have serious disabilities and that too will most likely not change anymore. If I'm lucky, I'll stay stable. If I'm unlucky, I'll get worse. That realisation hurted like hell!

Because of the ME, much is no longer possible. Big things, like working, doing my housework, going on vacation, doing my finances, visiting friends. But also small things, such as reading and solving sudokus. I could never imagine a life without books, but reading now takes a lot of energy at best. On bad days I can't read with comprehension.

Losing the little things hurts me the most. Those are the things that colour life. Those are the things that make me who I am. Saying goodbye to these precious things was the hardest, and therefore took the longest.

What I also really miss is the spontaneity in life. The carelessness. Because of the ME I have to plan my life well, otherwise I will have a lot of day left at the end of my energy. I would like to be spontaneous, but that is (almost) no longer possible.

Acceptance came unnoticed.

Despite all my losses, I had, completely unexpectedly, a special conversation in which I was held up a mirror. While I didn't realisze it myself, I turned out to have quietly accepted my new life. Of course, sometimes I still have days when I'm angry or frustrated. But most of all I have days when I live – within the limits of what is possible.

This column was published on ME Central 18 November 2022.