Well, no one has ever said that sentence before.
„Can you please send me a photo of me having a pee? This is the photo of the year.“
Well, of the year may be an exaggeration. But photo of the month is. It all has its history. Since the end of last year, more than seven months ago, a catheter has been stuck in my dick. Other people with degenerative muscle diseases become incontinent, with me it's the other way round. I became urinary retention from one day to the next. In other words, I can't piss. Without aids I would burst.
It's not that harmless. Even if I make fun of it myself a bit, not being able to pee is pretty unpleasant. Imagine a bladder infection where urinating is not only so painful that you think you can't pee, but you actually can't pee. The pressure increases and at some point you call the emergency doctor. Or, in my case, my GP, who comes to my house at night and at the weekend when I'm under pressure. The main thing is that I don't end up in hospital again. If I'm lucky, I'll spend three days in intensive care, if I'm unlucky, I'll end up in A&E - where you don't even know how the ventilation alarm is acknowledged, let alone what measures need to be taken. Theoretically. No kidding, it's all happened before.
Be that as it may, the symptom „sudden urinary retention“ is not unknown in ALS.
Nevertheless, there are so many such general theories about possible causes that this could just as easily be a list of causes for flu or a heart attack.
The doctor's advice is Pufi. After the weaning didn't work with the first catheter change, that was the only suggestion. So another operation, in which they put another plastic tube through my abdominal wall. This would not be to inject fluid into the stomach, but to get it out of the bladder again. Thanks, but no thanks. Too soon.
As usual, I have my own theories about the possible causes and triggers. Four things are at the top of the list.
- Cystitis
- Germ in the bladder
- Fear of fathering a child who grows up in Hamburg where I can't see it
- and... drum roll... Has there ever been a study on the possible side effects of scopolamine on the ability to urinate in patients with neurological degenerative muscle diseases?
Whatever. I don't believe what people say, I only believe what I can measure. And so far, no „argument“ from a Pufi has been able to convince me. Quite the opposite. I see the recent catheter change as at least a partial success. Like every 28 days since the turn of the year, I took another six hours to practise peeing. While I had previously achieved zero point zero in every attempt, this time it was 440 ml. That's a start. And disproves the claim that you can't do anything. I can measure the 440 ml. I believe in that.




1 Comment
Thomas Rolfink
3 years agoWhat I can read so far is so incredible and very well described by you. Thank you for this