What is it like to live with...? Short stories with examples from experience.


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.

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.

Living with ME/CFS is... Being total loss the rest of the day after an hour of mild activity.

After a (not very intensive) conversation of half an hour in the morning and a travel time of 2x 20 minutes (cycling at ease), I can be so exhausted that I am not able to do anything else for the rest of the day. And "nothing" is really NOTHING!

Living with tinnitus is… Being awake half the night because of a “mosquito”.

Last summer was not only warm, but also very rich in mosquitoes. In my area is a ditch with stagnant water, so I suffer from a lot of mosquitoes. For weeks I have crushed 10 to 15 mosquitoes, every night again. The buzzing of a mosquito makes me alert, and I won’t sleep until I caught the wrongdoer.

Living with ME/CFS is… Say it again, please? I don’t understand…

One of the most important characteristics of ME/CFS is "impaired cognitive functioning", such as problems with understanding. It is even one of the criteria which doctors will use to make the diagnosis. (See also the Health Council's advice on ME/CFS, March 2018.)