About 2% of people with ME develops very severe ME. These are the people who are in bed 24 hours a day, 7 days a week. Who can't do anything anymore. Who lie in a dark room, because normal daylight is overwhelming. Who wear headphones, because everyday noises are too much.

For more than 25 years, Jochem Verdonk has been involved in all kinds of interest groups for people with a disability or chronic illness. Despite all the differences, he also sees important similarities. Organising meetings for peers is such an similarity. What makes peer contact special?

Several years ago I came upon the path of paganism. It appealed to me and now I consider myself a pagan. Not long after I decided I wanted to go “into the (pagan) teaching”, I became chronically ill. My illness comes with some disabilities, which changes my path unexpectedly.

Sex is important to me, as it is to most people. But since I became chronically ill, sex is no longer self-evident. How do I solve that? With the necessary kinds of tricks…

A while ago I saw a petition on the website of HandicapNL calling for rehabilitation programs to be expanded with the transition from rehabilitation center to life at home. A justified demand, because that transition is very big. Too big. So I wholeheartedly support this petition! But it also made me jealous, because when I got sick, the reaction was: “You have to learn to live with it”. And I was outside again.

So far I have not talked about sex on this blog. That I will change now! Because sex is important to me, as it is to most people. But since I became chronically ill, sex is no longer selfevident.

Since I have ME/CFS, the flu is so much more severe than before. In the past, a flu was a matter of 1 to 1.5 weeks and then I was back in business. But now my life is completely disrupted for 3 to 8 weeks.

At one point I saw an occupational therapist as part of a rehabilitation process. One day they asked me what time I normally get up. That varies a lot and depends on whether I have a good or a bad day. On good days I get up at 10 in the morning, on bad days I don't get up until 4 in the afternoon.

One day I wake up. I'm looking in the fridge, the open door in my hand. I hear someone asking: "What am I doing here?" For a moment I am surprised, because I am sure I didn't say anything. Yet it is my voice. I look around and I see a plate with two sandwiches on the counter. I realise I'm making lunch.

I recently had to give a workshop. To be able to do that I brought a box of stuff with me, which fitted perfectly under the seat of my wheelchair. Ideal, because that way I had my hands free to wheel.

The night before I had everything ready, so in the morning I lash that box under my seat. No problem at all, because it is not difficult and moreover I had done that before.

The day is going fine. My workshop is going well and it leads to a number of interesting conversations afterwards. In short, I am satisfied.