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


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.

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.