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.
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!
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.
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.