Some of the things mentioned hurt like hell, others are just frustrating or annoy me to death if I live long enough to be annoyed to death. Still others are directly related to my breathing. They immediately affect everything about my whole body. There is no room for discussion. What is written here is the law.
- My lungs no longer have any measurable function. Without a mask, I cannot breathe at all - seriously - and am forced to hold my breath.
- Please never hold my head vertically or overstretch it backwards, but always bend it at least slightly forward.
- Incorrect storage at night has catastrophic consequences for me, which have already ended up in the emergency room in the past. I am very serious about this. So in a nutshell: I sleep 90 degrees (vertically) on my side, shoulders pulled out strongly, hips also pulled back sideways, legs strongly bent in an embryonic position. The most important thing (which I have to explain every week for two years and three nursing services): depending on my side, I look towards the oven (left) or the balcony door (right).
- When I lie on my back with my head straight (looking at the ceiling), I can't swallow, I breathe very heavily and secretions run unchecked into my lungs. I therefore avoid this position.
- When you drive me up or down in bed, always drive me completely up or down without stopping. Never stop on the way because every time I stop, secretion slides towards my lungs.
- You put my hands in your lap when you drive up so that my wrists don't break at some point, because even the little bit of mass that my body still has is too much when my hands are bent over and pressed into the mattress.
- My arms and hands never lie on my stomach, please. Not during the day in the supine position and not at night when I sleep on my side. It's uncomfortable and it makes breathing more difficult. Firstly, because the chest is constricted by the shoulders and upper arms. Secondly, because the weight of the arms and hands also presses unnecessarily on the stomach, which in turn compresses the lungs. Quite apart from that... this is no way to position a patient. This is how you bury the dead in the coffin. But it won't come to that for me, because my ashes are to be scattered at Lake Tegernsee. I find the concept of classical graves ridiculous.
- When you position me to sit, it only works if you first bring me all the way up, then pull my back out of the mattress and align me until my head doesn't tilt to the left or right and then move me back a bit. And move me back until I indicate that it fits. Please don't hold me 20 times and ask me if it fits. It won't, as long as I haven't given you a sign.
- When giving food, you need a bit of feeling. To be on the safe side, I always swallow at least three times. Only give me more food after I have swallowed and exhaled three times, otherwise I just spit it all out before I choke. And please don't inject food into my mouth when I'm being ventilated. I would swallow like hell, just like any other person who is not ill. When I say "done", I have a good reason for it and I don't want to discuss it.
- Consider the breathing mask and tube as part of my body. Don't kink the tube, don't lean against it, never lay the tube straight and taut and certainly never pull on it. What nobody has realised so far is that it really sucks when the tube pulls on your face. The weight of the hose itself is enough if it hangs taut from the bed. If, for example, the tube is stretched when you're lying down and the mask is already warped, just try to imagine how that must feel on your eye. Yes, and if there is so much tension on it that the tube even tears off or the mask falls apart - which has happened several times a week since the beginning of my time on the ventilator - without words...
- Don't lie down with my head on the mask, because as you can imagine with common sense, it hurts like shit again in the face. Pay attention to this especially when washing my back, but also when dressing, storing, etc.
- Put my arm to the side before you turn me. Chest rib on arm bone feels pretty shitty. And there's not much more than a skeleton left of me.
- The water in the humidifier should always be filled to at least 50 %. Yes, I know... please fulfil my wish anyway, okay?
- If you don't understand me, then ask and don't pretend that you understand what I'm talking about.
- Let me finish or write it out. Don't start frantically pulling on the mask while I'm still writing what I want to say to you.
- You can stretch my wrists and fingers upwards as much as you want (my joints are still used to that from climbing training), but never stretch them downwards. It hurts, just like any normal person.
- Before each change of position, my head is swiftly placed on the other side in a single flowing movement, then I am sucked deep down to my neck.
- The hole in the nose-mouth mask is for breathing through the nostrils. The tip of the nose does not go into the hole, please, but rests in front of it.
- The nose mask goes on the nose, not on the upper lip and not on the mouth.
