About living with ME/CFS.


Speech confusion

Bedroom [by Erika Wittlieb]

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.

Living with ME/CFS is… Getting lost in the fridge.

Trees in foggy snow [by Waldrebell]

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.

Living with ME/CFS is… A black-out by brainfog

Fog. Photo by Katie Moum on Unsplash

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.

My experiences at the Fatigue Clinic


In the past year I did the multidisciplinary treatment at the Vermoeidheidkliniek (Fatigue Clinic), location De Bilt. When I contacted them, I had 4 specific questions and I wondered if they could help me with those issues. Yes, they certainly could, the internist and the occupational therapist assured me at the intake. Uunfortunately reality was different: the treatment caused me to regress so badly I almost became bedridden. In this blog you can read what happened.

ME/CFS and the MUPS myth

Cartoon. Sick man is lying in bed, connected to a heart monitor. Female doctor stands next to the bed and thinks: "Everything checks out normal".

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!

(More) unknown causes of ME/CFS: mold

Wall with (dark) mold.

If ME/CFS is suspected, some obvious causes are excluded, and then the examinations will soon stop. After all, the cause of ME/CFS is unknown, so further investigation is considered futile.

If you are willing to look further, then indeed all kinds of possible causes for ME/CFS will appear. A number of them can even be treated properly! Although that isn't always possible in the Netherlands. Mold is one of these examples.

Living with ME/CFS is... Having to write down everything, because I will forget it otherwise.

Since the ME/CFS I forget a lot: I have to write everything down, otherwise I will forget it again. In the past I forgot things too every once in a while, of course. But then I still knew that I had to remember something (but what again?). Most people will recognise this feeling. Now it is different.