Nu het corona-virus rondwaart in een groot deel van de wereld gelden er ook in Nederland steeds strengere maatregelen om de epidemie te kunnen blijven controleren. Veel mensen vinden het moeilijk dat ze door alle maatregelen grotendeels aan huis gebonden zijn. Voor mij is dit mijn normale dagelijkse leven, want door mijn beperkingen ben ik altijd aan huis gebonden. Kortom, welkom in mijn wereld!
Roll up your sleeves & get started!
At the third online meeting of the Disability Network our (inter)national coordinator Morgana was present. Morgana has updated us on international developments within the PFI, and beyond. As a result, this meeting was slightly different than the previous two meetings.
2nd online meeting PFI-NL Disability Network successful
We know that many pagans and heathens with a disability or chronic illness run into walls. Because it is very frustrating if you can't access the meeting that you really wanted to go to. Because you can be very lonely in the middle of the circle, sitting on a chair, while everyone is dancing around you. Because it is uncomfortable if you’re following the ritual only half, because you can’t hear the speaker(s) well enough. Because it is very painful if others don’t understand what you need to feel safe at an event.
Sunday 15 September was the first online meeting with pagans and heathens with a disability. We were with a small group, but soon it was clear that all participants are used being a go-getter. As a result, we had a very good and effective conversation. The next online meeting is on October 27th at 15:00.
At the PFI-NL Spring Gathering on 25th May one of the activities was a Community Circle about accessibility and the pagan/heathen community. It was the first time this theme was discussed this explicit at a meeting of PFI Netherlands. We look back with satisfaction at this interesting workshop, where we have taken a first step towards inclusiveness as a matter of fact.
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.
Last summer was not only warm, but also very rich in mosquitoes. In my area is a ditch with stagnant water, so I suffer from a lot of mosquitoes. For weeks I have crushed 10 to 15 mosquitoes, every night again. The buzzing of a mosquito makes me alert, and I won’t sleep until I caught the wrongdoer.
When I got ME/CFS, I got other complaints as well. For example, I got tinnitus. It started with a soft murmer in both ears, but after a while the murmer became louder and several other sounds joined in.
One of the most important characteristics of ME/CFS is "impaired cognitive functioning", such as problems with understanding. 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.)
When I got ME/CFS, I also got other health problems. I also got a hypersensitivity to all kinds of stimuli, such as light, sound and smells, amongst other issues.