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.
ME/CVS zorgt er vaak voor dat de informatieverwerking vertraagd is, zodat het langer duurt om informatie te verwerken. Het maakt daarbij niet uit of de informatie nieuw of al bekend is.
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.
Last summer I went camping for a week in a pod, a kind of wooden tent, with a good friend, who knows about my ME/CFS and is very understanding.
Today, the three patient organisations for people with ME/CFS have a round table discussion about ME with the committee of Family, health and care. I don't manage to be there in person, so I shared my story here.
This is what I wrote:
Jochem, 44 years old.
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.
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!
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.
When I got ME/CFS, I got other complaints as well. For example, I got tinnitus. It started with a soft murmer in both ears, but after a while the murmer became louder and several other sounds joined in.