For real? Yes, but not what you were thinking possibly. I'm thinking of medical equipment. Because I am dedicating a separate heading to the tube of my ventilation, because I have not been listened to by any of my previous carers and nursing services. This writing is my last cry for help before I learn to live permanently with fear, pain and wounds.
When I wrote the first print version of my care manual it said the following.
In the past eight hours, my tube has been ripped off once while I was lying down, my mask has been pulled down onto my lips about 20 times by the tube wedged between the bed and the caregiver's body, and for a good six hours now the nasal mask has been pressing on my open, bleeding wound on the bridge of my nose.
Why didn't I say anything, you ask? I did. At least 20 times today (it was a lot more, but I don't want to exaggerate or overdramatise). The last time was four minutes ago. We pushed the mask up again for the countless time. Well, and then, 3.5 minutes ago, the tube was hanging taut from the bed again because we weren't paying attention. And the mask is already too far down again, pressing on my teeth and the wound on my nose. Besides, the mask is leaking because of the tension from the tube. Air flows into my eyes. They water. The fact that the mask presses on the bags under my eyes doesn't make it any better. I'll probably have to finish this chapter some other time, because the eye control doesn't work properly anymore because of the wet eyes. For every letter bbrrrwswawjjiijkjijuc....
...I need five attempts before I hit it - I wanted to write earlier. And I was almost finished with this paragraph. There's just one big request missing. Watch the hose. It must never be taut and it must never pull on the nose. Please!
Things have got better in the last six months. Nevertheless, this article is more topical than ever. Because in the meantime, two more tubes are hanging out of me. Namely the PEG and a bladder catheter. And contrary to all hygiene standards, I have them stuck and fixed in the worst possible way. Unfortunately, experience has shown once again that otherwise not a day goes by without one of them being pulled out of me. Hard to imagine, I know, but what can I say? That's just the way it is.
