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...
Fortunately, medical sports physiotherapy and occupational therapy helped me to deal with it better, even though the ME/CFS did not get any less. It still has a very big impact on my life: I have to plan my daily activities carefully, live mainly in my own home and therefore can't work either.
When I got ME/CFS, I got other complaints as well. For example, I got "neuro-cognitive problems", such as problems with concentrating, remembering, orienting, thinking and understanding.
On 22 September, Kennislink published an article about transgender people and regrets, with the somewhat trendy title "Regretting your sex change". I think it is very good that we pay attention to people who are not satisfied with their gender change. Even though the number of people with regret in the Netherlands is extremely low: about 1%, that does not make the suffering of these people less! Unfortunately, I think that Kennislink does not do justice to the situation with this article.
Orthostatic intolerance, such as POTS, and other forms of dysautonomia are still very unknown. Also with doctors and other health care providers. That is why we celebrate October as Dysautonomia Awareness Month worldwide.
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.
One of the most important characteristics of ME/CFS is "impaired cognitive functioning", such as concentration problems. It is even one of the criteria which doctors will use to make the diagnosis. (See also the Health Council's advice on ME/CFS, March 2018.)
Last year I attended a two-day course at PGO Support, the organisation that supports patient organisations such as the ME/CFS Foundation Netherlands. We were with 13 participants from all kinds of different patient and health care organisations, and from all over the country. In short, a very mixed group!
When I got ME/CFS, I got other complaints as well. For example, I got orthostatic intolerance, which manifests itself in dizziness, a heavy head and/or weakness.
There you are: 41 years, with a chronic condition that devastated my life and the message "We can hardly do anything for you. You will have to learn to live with it". But how am I going to do that: "learn to live with it"? I had no clue.
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.