DasIstALS

I say bluntly what I think, sometimes through the nose, but always honestly. If you don't want to hear the answer, don't ask me.

I must be the only person on this planet who can mentally bridge the gap between a urinary catheter and his preference for serial polygamy.

How many hours do you think I work in a tightly scheduled 12-hour shift?

I always find it fascinating how nurses make statements about my state of health over my head.

Hang digital picture frames everywhere in the flat and on the smoker's balcony and in the guest WC that show live what needs to be done.

Page views: 516 There was something, let me think. That's right. That was yesterday. Not that I'd forgotten. Or assumed that I wouldn't be forgotten this Mel. I don't want to hypothesise about the reasons for this, that would be an unnecessary waste of energy. I'm just saying that I've already told everyone that...

Page views: 510 aka ventilator weaning for ALS My personal highlight of the otherwise less amusing second half of the week, i.e. last week: a letter from the medical service to my care service. There are new forms again and the old ones no longer work. This is the second time since my illness began. But you can really make life difficult for yourself. That...

This week I have been very preoccupied by a sentence that I have heard for the third time now from nurses. "I really don't care what happens to the earth after me.

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Page views: 466 (aka medication chaos) So I really have to get one thing off my chest. Yes, documentation is a bottomless pit. Wanting to update existing documentation is a Pandora's box. But my arse. I'd rather have no documentation at all than what they've been working on - or at least what they've been working with - since last year. It...