Actually you should be beaten for that
Previous issues
Week 24: Nurses' diagnosis
Week 23: Care Officers
Week 20: MDK assessor
Week 19: Care service
Always Friday. Or what. Sunday? What happened to Saturday? And before you know it, a new week is here. Monday. Well, hello there.
What kind of week was that again? Hardly a night without trouble. Last night? It was okay, I guess. I'm about to file what happened under "unimportant, forget it". That's how I started writing my text. Yesterday. Today? I'd have to revise it. After four hours of sleep I had to be sucked off badly. Reason follows. After all, that's what I said would happen. Didn't I?
It was a week full of lapses, lapses and lapses on the part of my carers. The worst thing is that now I know for sure. My beloved sister is visiting. And she takes photos of my mask, every time one of my carers claims that the band at the back is already behind my ears - it doesn't go any higher. I was wrong, I have perceptual problems, I'm just imagining it.
Let's cut to the chase. On the left is a photo of how it should be. The lower headband is behind the ear at the back of the head. That's probably why it's called a headband. If it belonged to the neck, it would probably not be called a headband, but a collar. Just a guess. I'm no expert. Whatever you call it, in the photo on the left the mask is loose, but stable, tight and without pressure points.
The photo on the right shows a real life example from last week. My carer is still adamant that he did everything correctly. Quote: "the same as always". I wouldn't have gone that far, but if my carer thinks he always messed up the mask so badly... Who am I to disagree? What do I know? I'm not an expert.
With all understanding for everything. No. Really... just no.
I don't think it's appropriate to tell me that I have sensory problems. Half of my carers should see an ophthalmologist. They do. That would be appropriate.
And at this point I ask myself, what to do with my hit list? I also found the lady from the AOK funny somewhere. And that's the point. She was funny. At least when you look at it ex post. At first you just think wtff? How can someone be so misinformed and spread such false knowledge with such conviction? In the end, someone still believes her. Like my team management, who in all seriousness asked me to eat more calories and protein in order to... best read it for yourself. In 9th place, which is what I had planned for this week. Yes, it's historic, but it's historically stupid.
And the mask that causes perceptual disturbances in me, you want to know? Well. I'm sure there's a place for it. But what is it? It's not a blemish, even if it looks like one. I can't trigger it, I can't alert it, it constricts my face, blows into my eyes and I can hardly breathe. Just writing these lines my pulse is shooting up again, it had just calmed down to an almost mildly pleasant 108 to 111. I'll have to write more later.
Tuesday, late afternoon. Our two assistants greet us. The office has been waiting for days, no, weeks, for data protection documentation for a client. And various other tasks that are piling up on my virtual desk. I've been writing this report since Friday. I wonder how long it will take me to document the IT security of a law firm?
Wednesday. Another night with only one hour of sleep. The mask change did not work.
I declare this post unread and finished. The mask change discussion is worth a position 2 to me.
Thursday. I still have to click on publish. The cover picture is still missing. Too exhausting, I can't manage it. After an exhaustive discussion about whether the caged sea creatures in Seaworld feel comfortable - that is, the 20% of the animals that don't die miserably on the way there from days of physical and psychological stress - all I want to do is sleep.
Friday. After four hours of sleep I have to be sucked out. I continue to sleep afterwards, as usual. But I don't. Nothing happens. Says my nurse. What? Exactly. We wouldn't manage to change the mask anyway. When I'm tired it always leaks and then I would always say that the headgear is too far back in my neck. Well, then. He must know. And with day duty, the mask drama continues. I lost count of how many times I would just put the mask back on. Instead I swallowed loads of mucus and unfortunately got it into my airways. Because my head was turned in the middle and left that way until my mask was supposedly straightened. Anyway, the day was once again fucked.
Saturday. Cover photo. Publish. Click. Done.
- Cover me up, strip me completely naked and "clean" me in bed with surface disinfection, then soap me up from head to toe. And leave me to freeze for two hours until they have finished the laundry. Read more? You can find it here: Basic care
- Now I have certainty. My beloved sister is visiting. And takes photos of my mask, every time one of my carers claims that the band at the back is already behind my ears - it doesn't go any higher. I was mistaken, I have a perceptual disorder, I'm just imagining it. The photos, however, prove the opposite.
- You still remember my Nail fold inflammation? It feels like months ago. It was during my sister's last visit to Germany. And she comes to see me - Yippieh! ? - next week. She'll be surprised when she sees this next week. Was almost better after all, after my doctor said, please do not put anything on it. Just disinfect and leave it alone. Um, leave alone and trust the doctor, my nurses can't do that. Well, apart from the sort who, even after explicit reforestation, hardly complies with the request to store me properly at night.
Story follows. Small teaser. Nurse A has independently decided not to disinfect any more. Uh, wait a minute? Yes, the same nurse has just pushed out pus. Strange things have been happening since he was forced to work for me by his PDl for days, completely exhausted and not at all receptive. I really - really - think he has post-COVID. Nurse B, without orders and without asking me, put Lavanid on it. Nurse C picked at it. Nurse D removed crusts, although the doctor specifically said that we were not allowed to do that. Nurse E tells me that everything has healed perfectly and that I shouldn't tell my doctor. The fact that I am supposed to be in pain can't really be true.
I inform my nurses and still inform my doctor. He comes by immediately. Inflammation again. Pus. Blood. Some contaminated ointment residue. Swab taken from skin and sent to lab. Thank you. To the whole team. - To tell the surprise visitor, who enters the flat with his own key on Saturday morning, one of the most implausible old wives' tales I have ever heard. Of course, he didn't drink the can of Jackie Cola. Some completely retarded person threw it in the rubbish and now the whole flat smells of it. He took it out of the bin to rinse it out. More about that? You can find it here: The insensitive sick person.
- "I have to have a little whisky from you now." (he said, ignoring my dimenti and emptying the bottle until the end of service) Read more? You can find it here: Inventory Olé
- Leaving me in the shit for over an hour, because night duty comes shortly and I'm so stressed that my own coffee is more important. I would have loved to use the time to clean myself up, because my three friends who are visiting are having dinner in the dining room. I really don't need to have my ass wiped when my friends are sitting next to me. Read more? You can find it here: Shift, change.
- Finding a syringe filled with cloudy liquid by the sink and wanting to give it to me via the PEG without knowing whether it is a tablet, cleaning agent or something else.
- The MDK assessor comes to the conclusion that no care-relevant issues are to be expected with my ALS. I have this in writing.
- The lady from the AOK just doesn't listen to me. Or she doesn't want to understand me. Probably both. I'm not saying I'm used to it. But I am used to it. The fact that she seriously wants me to believe that the insertion of a gastostoma with a stoma button would help against my muscular atrophy caused by the decay of the motor nervous system is the tip of the iceberg. Not only is this "button" she is talking about not familiar to any of my doctors. Research shows that it is something like a PEG for babies and toddlers. How in the world is that supposed to stop neurons from falling off?
- I would have to have a PEG inserted. Because then I could be mobilised in a wheelchair and pushed out onto the balcony, because living in bed has no quality of life. That's what the nursing consultant at my nursing service told me. You can find the whole story "O'zapft ïs! here. Be that as it may, this is not only presumptuous and impertinent, but, as I said at the time and as I have living proof today that I have a PEG, it is factually wrong. The opposite is the case. Since the PEG, it has become impossible for me to get up because of the pain. But what do I know? It's only my body.
