disability

About living with a disability or chronic illness.

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ME-Livingroom meeting: Loneliness

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...

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.

Health care in the Netherlands: why make it easy when we make make it difficult? (1)

In the Netherlands, the government says all the time they are so strict with providing care, so we can provide care to "those who really need it". My personal experience with the Social Support Act is completely different. My experience is more like: “Do you really need help? Then you can rot in hell!” Unfortunately, I know many others with similar experiences.

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