People just don't want to believe me when I say that I'm not hungry or have no appetite right now and therefore don't want any more drinkable food.
People simply don't want to believe me when I claim that 1.5 litres of the finest Munich tap water is enough for me via the PEG until 4 pm. I don't feel like drowning.
People just don't want to believe that it doesn't do me any good at all to take another 400 kcal tube feed before sleeping. It simply doesn't give me anything when my stomach and intestines are busy all night.
They just don't want to believe me that I know best when which sleeping pill is best for me. The doctor has therefore even ordered in writing - with a practice stamp and personal autograph - that the patient alone has to decide when which sleeping pill is to be administered. Explicitly also for the case that I want to combine several different drug classes and take more than my carers think is right. How does this order go down with some carers? Three guesses...
People just don't want to believe that I'm serious about the prescription. With other patients... Right. With others. Right now I want to sleep, and I have for some time. It's already 3:30, damn it. I don't give a shit about your opinion and how you do it with others. People just don't want to believe me,
They just don't want to believe that I notice whether I've had a bowel movement or not. They simply take the blanket away from me, open my nappy without being asked and find out that I haven't actually had a shit yet. Of course, at a volume that guarantees that even the last of my guests has heard. My guests, whose gaze was already irritated when I presented my genitals, changed to something between incredulous, stunned and disturbed.
And they just don't want to believe me - among countless other little things - that I could assess how the mask would fit correctly. You have no idea how frustrating that can be. Imagine you've been on your feet for 14 hours. For 14 hours the mask has fit. No pressure, no slipping, no leakage and therefore no false alarms caused by it. No watery eyes, because nothing blows into the eyes and nothing presses on the bags under the eyes.
And then a nurse comes along and says that the mask looks crooked and she can't leave it like that. My plea not to touch me and to leave the mask alone is deliberately ignored with the words that I am mistaken about the supposedly good fit of the mask. Without announcing anything and completely against my will, he or she adjusts the mask.
Now I have leakage on both sides. All around, top, bottom, side. It is uncomfortable. Because of the high leakage, the ventilation is continuously triggered and pushes air into the lungs without interruption. You could call it passive hyperventilation.
What was that all about, I asked myself. The mask looked uncomfortable. Whether it's her head or mine, I want to know. But... I interrupt for a cynical comment. "It was wonderful all day until you fiddled with it uninvited and broke everything again.". Although it's hard to express it more harshly without being rude, this changes... nothing.
It's the same every time. If you ask me, there are just too many nurses who act out their neurotic OCD on patients like me. Even more suitable are coma patients. They can't even complain, as I regularly do. Let's face it, what am I supposed to do? Just bear it and bear with it. Because my nurses are also - good-hearted - people. It has to come out somewhere. And who comes into question for that but me? The most striking stereotypical pattern must be that their partners have already left. Who is left there but me, who can neither run away nor have another carer ready in a hurry? Yes, I know, I have enough problems of my own.
But do I have them at all? Isn't improving the care situation here the only goal that has been driving me for months?
Or do I perhaps subconsciously like to put myself in situations in which I run a massive risk of succumbing to Stockholm syndrome? Because this role suits me? I feel quite comfortable there, secretly?
Is this possibly the flight to the side, after a goal is already clearly visible straight ahead? And I don't like living without a daily - short-term - goal. Apart from my provisions, I have very little to worry about at the moment. My family is doing well, my friends too. My relationship is a bit rocky at times, but we've managed everything somehow so far. I have a permanent job as a consulting manager. Today, with 90% severe disability, I earn more than... you don't talk about money. You have money. Wink smiley.
On the other hand, I have never had a problem defining new goals. Isn't that what it's all about? After all, the core of what makes a human being is the will and the continuous striving for improvement.
Something will turn up. Something always turns up.