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.

"What you get from afar is good" I thought and decided to hire a British psychologist. So our conversations are in English, which gives our sessions an extra dimension.

I'm stuck in an abusive relationship. My partner is convinced that I’m cheating on him. He thinks I'm asking too much of him. He systematically breaks down my self-esteem. I want to get out of this relationship, but I can't. Life couldn't be more lonesome…

It is important to have a community where you are among like-minded people. Where people accept you as you are, where half a word is enough. In short, where you are at home. For me, that is the community of transmen. Only there are made no (unspoken) assumptions about my gender, my youth and/or my physical appearance. Only there I can be fully myself without expectations.

For a long time I didn't want to write about MUPS, for several reasons. Because ME/CFS is not a MUPS. Because I don't want to encourage the MUPS myth around ME/CFS. Because the MUPS myth bears witness to an unparalleled arrogance. Because... However, I notice it is time for me to do write something about it. Why? For exactly the same reasons!

In various groups or forums people regularly complain that it's so annoying that ME/CFS can't be determined biomedically. I think docters are able to determine ME/CFS biomedically indeed. After examination ME/CFS specialists are able to determine whether a person has or hasn't ME/CFS. They are able to exclude ME/CFS as well, for example if there's evidence of another disease.

Now I have been ill for about 3 years, something strange happens to me: I am starting to forget how it used to be. I realise very well I could do much more for the ME/CFS than I can do now, but the memory of my old life is starting to fade. I have become so used to my current situation that I can no longer imagine well what my former life was like.

Regularly I read messages from people with ME/CFS who are this incredibly exhausted that they're very ill and in great pain. Unfortunately, this is the reality of people with the heaviest forms of ME/CFS. A situation that you don't wish for your worst enemy! Nevertheless, I find it striking that further reading often shows that these people go (far) beyond their limits. And that happens (almost) every day. I think we can no longer afford such "distractions".

Through a joint hobby I got to know a new acquaintance. We have met each other a few times now, and it clicks well. Meeting isn't always easy, because she has a busy schedule and I am limited in my possibilities. One day I get an app from her...

At the moment I found peace with my situation bit by bit, the diagnosis was 2 years ago. I thought that was a good moment to repeat the exercise test with which my diagnosis was made. Cognitive I had progressed well: the brain fog was significantly less than in the beginning. I was very curious what had changed physically in the same period. My ME/CFS specialist thought this was a good idea, and so we made an appointment.