On this site I tell about my life as queer with a chronic illness. As a passionate storyteller, I exchange information with striking examples and personal experiences. Hopefully you are able to better empathise with my situation. And with that of many others...
During rides with Regiotaxi and Valys I usually have a chat with the driver. All kinds of topics are covered, from the driver's dogs to COVID, from my disability to politics. Often I am asked if I have a job. “Sure,” I answer. “I am the manager of a dynamic team.”
The Online ME Living Room Groups are gatherings for people with ME/CFS. Started as meetings in the living room of founder Jochem Verdonk, the meetings now take place online. In May, the groups will be five years old. Reason for a look back and a look ahead.
Sex is important to me, as it is to most people. But since I became chronically ill, sex is no longer self-evident. How do I solve that? With the necessary kinds of tricks…
What is it that the world assumes that your head isn't working properly when you use a wheelchair? Why do my wheels immediately put me in the category “completely dependent”? This patronising is pure discrimination! Not my wheelchair, but that imposed pitifulness makes me disabled…
A while ago I saw a petition on the website of HandicapNL calling for rehabilitation programs to be expanded with the transition from rehabilitation center to life at home. A justified demand, because that transition is very big. Too big. So I wholeheartedly support this petition! But it also made me jealous, because when I got sick, the reaction was: “You have to learn to live with it”. And I was outside again.
In general, sports have my complete disinterest. I just don't care what league has been going on now or who will win. Apparently I'm not that competitive. But the Tokyo Paralympic Games turn out to be a different story…
Due to my chronic illness I have a constant lack of energy. Recovery is not likely. That's why I decided to use aids to make my life easier. As for moving myself, I quickly ended up with a wheelchair. But how do you arrange a wheelchair if you can still walk? And what prejudices do you encounter?
![Dog [photo: dife88]](https://jochemverdonk.nl/sites/default/files/styles/medium/public/field/image/dog-2484762_640%20%28by%20dife88%29.jpg?itok=DLdFI_bZ "Dog [photo: dife88]")
Since I have ME/CFS, I haven't had flu! No. Again: since I have ME/CFS, I don't notice when I have flu. Because to me the symptoms of the flu are so much like the symptoms of ME/CFS that I can't tell them apart. That is why it often takes a week before I realise I am not having a bad week, but I have flu.
![Fly [photo: robinbabu]](https://jochemverdonk.nl/sites/default/files/styles/medium/public/field/image/fly-637949_640%20%5Brobinbabu%5D.jpg?itok=yXdy5Rd- "Fly [photo: robinbabu]")
So far I have not talked about sex on this blog. That I will change now! Because sex is important to me, as it is to most people. But since I became chronically ill, sex is no longer selfevident.
![Sniff [photo: Silviarita]](https://jochemverdonk.nl/sites/default/files/styles/medium/public/field/image/sniff-1768463_640%20%28by%20silviarita%29.jpg?itok=5YOwEFI2 "Sniff [photo: Silviarita]")
Since I have ME/CFS, the flu is so much more severe than before. In the past, a flu was a matter of 1 to 1.5 weeks and then I was back in business. But now my life is completely disrupted for 3 to 8 weeks.