How are you?

Currently I am dealing a lot with pain. Primarily out of my own need and distress. Almost daily people ask me how I am and I have several problems with that. Often I answer the question with a general “As always”. But often the question is not meant superficially at … >>>>>>>

About breathing

Lately I have noticed a change – among others – in myself. In the evening, when I lie on the couch, I have unusual breathing. I have to take deep breaths more often, it’s like I’m bubbling. As if I needed more air. I have been observing it for a … >>>>>>>

Like a baby only not so cute

When I move, I remind myself of a baby. I walk, stagger, like a toddler who has just learned to walk. When I move my hand, I am imprecise, I hamper myself. Quite often I overshoot the target, so if I want to scratch my nose, I may give myself … >>>>>>>

Emergency room

The day before yesterday was the day. First time in the emergency room. Urinary retention. I guess it was a coincidence that I saw urologist about two weeks ago and we figured out self-catheterization. The urologist thinks it’s also a good way to postpone a permanent catheter, because he says, … >>>>>>>

Travel plans

I am making preparations. I’m going to Bavaria tomorrow and I’m very happy. I was never homesick, for example when I left my birthplace, but I am now. Although I can say that I already have quite good here in Hessen, I have met some great people. And some strange … >>>>>>>

About Dysautonomia

Dysautonomia is something that catches all of us in the course of the disease. It can be confusing, it can be anything and in the symptom-variety you often do not know, what comes from the disease and what not. But it is a little bit like our body is a … >>>>>>>

The horror symptom

Each one of us has his/her horror symptom. Mine is antecollis. And I am sure I am not alone. For that reason, I want to know how it comes about and what I can do about it.

Antecollis is the term used to describe excessive forward flexion of the neck … >>>>>>>