It really doesn't take much to make me happy. As is so often the case, it's the little things that make life more beautiful.
- My fingers are constantly contracting. Unfortunately, this not only looks like shit and is not exactly healthy, but it is also unpleasant. So please stretch my fingers out again at every opportunity.
- If I could do it myself, I would fill the humidifier to the brim every hour. The part is a total misconstruction. On level 1 you dry out, on level 3 you drown in condensation. So there is only level 2 left anyway. This works well as long as the humidifier is full and has not been switched on for more than two to three hours without refilling. After that, the breathing air gets hotter and hotter, like in a steam bath. If there is only a little water left, about two fingers' width, the air starts to smell charred. No joke, I don't understand why myself. But it's like this. What can you do to make my day? Don't always make me beg to fill up the water, but fill it up without being asked.
- It's similar with my lips. Since I've been in intensive care, I suffer from constant bleeding gums after brushing my teeth. Unfortunately, it is quite unpleasant when the lips become encrusted with blood and dry out. You are welcome to remove the crust from my lips as often as you like with a CPAP wet wipe (the ones with aloe vera instead of disinfectant with the green lid or grapefruit and lemon with the red lid). It doesn't hurt at all. You can press on firmly. The main thing is that my lips are finally clean and pleasantly moist for at least a few minutes.
- Speaking of aloe vera, lips and moist. No, not a woman's story. Well, almost. The four desolate orchids and my two even more desolate aloe vera are the only things left of my former floral splendour. My previous keepers were too modest to take a watering can into their hands every now and then, and they clearly told me so to my face. Perhaps my little plants and I will experience better times with you.
- Speaking of moisturising aloe... I hate body lotion. I hate lip balm. I hate Bepanten. I hate Nivea cream, Dr Kaufmann's and whatever they're all called. When you wash, you use water with a little shower gel and then wash off with clean water, please. That is enough. Please no disgusting slippery bubble bath in bed.
- Do you like freshly squeezed juice from really cool fruit? I have absolutely no inhibitions about turning €40 worth of airplane mangoes into a single litre of mango juice, and sure, if you make me the juice, you taste some of it. I used to order fruit every week. But then at some point the juice was always empty before I got any of it or fruit went mouldy for really a lot of money because TikTok and Youtube were more important. I gave up ordering fruit. But if you feel like it, let me know.
- Do you like records? Then tell me your taste in music and we'll spend a few long evenings together in front of my record player.
- I like to talk to my counterpart at eye level. Treat me like a friend or, for all I care, like an enemy. The main thing is not to treat me like a terminally ill patient. I also don't need anyone to mother me and give me smart-aleck advice of the kind that I'm not used to. "You need a PEG." or even "You need a tracheostomy tube." is not a good idea. Preferably from the mouth of a vaccination refuser, they are always at the forefront when it comes to what invasive operations I should have to undergo on my body. Right, my Body. Anyone who does not accept this has chosen the wrong profession.
- I am severely disabled and severely handicapped, but not deaf and not slow-witted. Don't talk to me like I'm a 90-year-old grandma.
- To conclude my whining, one more thing. Please don't keep telling me how my health has deteriorated. I know that better than anyone and it really doesn't help my health if people keep telling me how poor I am. I'm doing pretty damn well. Even if no one ever believes me.
