Usually I am able to walk normal, but not on bad days. Then I can't walk straight on, but only can wobble back and forth like I'm drunk. On such days I often seek support in a railing or a wall, so that I can't fall. (Fortunately that happened only once yet.)
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...
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.
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.