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...

Connecting to Spirits of Land - Residential Intensive

The road (photo: <a href="https://pixabay.com/users/bertvthul-1134851/?utm_source=link-attribution&amp;utm_medium=referral&amp;utm_campaign=image&amp;utm_content=815297">bertvthul</a>)

29th November – 1st December 2019

This autumn British Reclaiming/Feri Witch Raven Edgewalker will visit the Netherlands to give a special workshop. During this weekend intensive we offer the opportunity to build relationships and deepen our existing connections to the land upon which we dwell, and the (un)seen Spirits that we share it with.

Tags: 

Report workshop “Dis_spelling disability: inclusiveness as a matter of fact”

Picture of Soleil and Jochem

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.

Belonging: to feel at home

A group of 10 silhouettes of people: men, women and others.

It is important to have a community where you are among like-minded people. Where people accept you as you are, where half a word is enough. In short, where you are at home. For me, that is the community of transmen. Only there are made no (unspoken) assumptions about my gender, my youth and/or my physical appearance. Only there I can be fully myself without expectations.

My experiences at the Fatigue Clinic

Jochem

In the past year I did the multidisciplinary treatment at the Vermoeidheidkliniek (Fatigue Clinic), location De Bilt. When I contacted them, I had 4 specific questions and I wondered if they could help me with those issues. Yes, they certainly could, the internist and the occupational therapist assured me at the intake. Uunfortunately reality was different: the treatment caused me to regress so badly I almost became bedridden. In this blog you can read what happened.

Deities with a disability

The Aztec god Tezcatlipoca ("Smoking Mirror")

On 25th May, I gave a workshop on accessibility and the pagan community, together with a friend. This workshop was about the many deities with a disability, about what pagans with a disability can teach the community, and about practical tips for a more accessible community. My research into deities with a disability yielded a surprising result!

May 12: World ME Day

Blue ribbon - symbol for ME/CFS

50 years ago, in 1969, the World Health Organization (WHO) recognised ME/CFS as a neurological disorder. However, in the Netherlands ME/CFS is still formally considered to be a psychosomatic illness. On World ME Day, we realise that the Netherlands is 50 years behind the international consensus.

ME/CFS and the MUPS myth

Cartoon. Sick man is lying in bed, connected to a heart monitor. Female doctor stands next to the bed and thinks: "Everything checks out normal".

For a long time I didn't want to write about MUPS, for several reasons. Because ME/CFS is not a MUPS. Because I don't want to encourage the MUPS myth around ME/CFS. Because the MUPS myth bears witness to an unparalleled arrogance. Because... However, I notice it is time for me to do write something about it. Why? For exactly the same reasons!

(More) unknown causes of ME/CFS: mold

Wall with (dark) mold.

If ME/CFS is suspected, some obvious causes are excluded, and then the examinations will soon stop. After all, the cause of ME/CFS is unknown, so further investigation is considered futile.

If you are willing to look further, then indeed all kinds of possible causes for ME/CFS will appear. A number of them can even be treated properly! Although that isn't always possible in the Netherlands. Mold is one of these examples.

Pages