Welcome!

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...

ME-Livingroom meeting: Treatments (2)

ME-Living room meeting

Every month I organise ME-Living room groups, meetings for people with ME/CFS. At these meetings we exchange experiences, share tips about our lives with ME/CFS, and make new contacts. I supervise 2 groups: every 1st Monday and every 3rd Wednesday of the month. (Click here for more info.) Because our experiences might be interesting for others as well, I will share the summaries of our conversations here.

ME-Livingroom meeting: Treatments (1)

ME-Living room meeting

Every month I organise ME-Living room groups, meetings for people with ME/CFS. At these meetings we exchange experiences, share tips about our lives with ME/CFS, and make new contacts. I supervise 2 groups: every 1st Monday and every 3rd Wednesday of the month. (Click here for more info.) Because our experiences might be interesting for others as well, I will share the summaries of our conversations here.

Living with ME/CFS is... So much more than being "tired" all the time.

When I tell people I have ME/CFS, I often get a blank look. People do not know about the condition ME or CFS. That is why I nowadays explain more: "I have ME, also known as chronic fatigue syndrome." That usually turns on the light...

Angry and sad...

I saw your patient Mr. J. Verdonk several times, due to analysis fatigue complaints. In summary: 41-year-old patient with complaints of fatigue to the Dutch criteria for CFS and also the international consensus criteria for ME. The diagnosis of CFS/ME was therefore made. According to the consensus criteria, this concerns a minor form. This was confirmed through a spirometric examination. No sleep disturbances of importance were found in an exploratory sleep study. Conclusion: CFS/ME minor form, fibromyalgia

At the time I didn't realise it, because I was working far too hard to get the right diagnosis. Now I know that my diagnosis was extremely fast. In fact, all protocols for diagnosing ME/CFS explicitly state that the symptoms must last for at least 6 months before a diagnosis can be made. My personal experience is that also after 3 months it can be perfectly clear that it concerns ME/CFS.

Living with ME/CFS is... Living with fibromyalgia too

When I got ME/CFS, I got other complaints as well. For example, I got fibromyalgia, amongst others, also known as "soft tissue rheumatism". It started with a burning sensation in my arms, which I did not know what it was. The physiotherapist could not find anything, so I ended up back home without any effect.

ME-Livingroom meeting: Finding a balance

ME-Living room meeting

Every month I organise ME-Living room groups, meetings for people with ME/CFS. At these meetings we exchange experiences, share tips about our lives with ME/CFS, and make new contacts. I supervise 2 groups: every 1st Monday and every 3rd Wednesday of the month. (Click here for more info.) Because our experiences might be interesting for others as well, I will share the summaries of our conversations here.

Living with ME/CFS is... After a excellent night's sleep, still waking up ruptured.

It is almost impossible to explain what it is like to never wake up rested. I go to bed on time. I sleep fine. I also sleep long enough. My bed is perfect. Sleep centers can not find anything. Medication can not help me. And yet I never feel rested, or worse.

So incredibly tired

So... incredibly... t..i..r..e..d..

About 3 years ago I suddenly was exhaustedly tired. At that moment I had a temporary job doing light secretarial work for 3 days a week, but after work I was só tired that I fell asleep on the couch. The days I didn't work I needed to recover. In short, my week consisted of working, sleeping and eating. Suddenly I didn't have space for other things any more.

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