It's time for a little update. I'm doing great with the eye control, but it's no comparison to my usual 500 strokes per minute. Since I reply personally to everyone who writes to me, it takes time and I could still answer all the messages. Sorry for that.
Rest assured that I am grateful for every tip and will follow it up. Every single one, even if I haven't written you back yet.
Reactions
So what happened this week? An incredible amount. My post was shared well over 300 times. And that's despite the fact that it's about a far less popular topic than most of the stuff you find on fb ? I get messages from so many who help. Very few of them knew me. I find that quite remarkable.
The reactions to my letter, including the package insert, are also remarkable. At the moment I'm keeping my feet still (it's not hard for me anyway), because I actually have something quite fancy in mind. It's an intensive care service, but they've already had a few ALS patients. They currently have some too. Family-run business with 120 employees. Actually, they don't have any capacity??? [Interruption] Some fucking wasp actually has the cheek to trick my fly screens. Almost sits on my head. The keeper flattened it. I don't care if they're a protected species. I even eat a vegan diet out of conviction, but that's where friendship ends. Anyway, everyone's on holiday in August. It's the same with the new nursing service. They cancelled another patient because of that. But the manager really wanted to meet me in person after she had read my text.
The thing with the ear
No sooner said than done. A bit awkward at first, because I've had almost no hearing in my left ear for four weeks. My family doctor has already been four times and tried his luck with rinses. But I didn't have any. Because I can only talk when I'm lying on my back with my head turned to the right (I'm lying on my right ear and can't hear anything there either), I had to make a decision: Talk or listen. You can't do both at the same time. I decided on talking and lip-reading. After the ice was quickly broken by my nurse chatting to the boss in her native language, everything went really well. On Friday she planned to write the duty roster and scrape together services for me by hook or by crook. And if she had to go round all the staff. Sounds like the jackpot I had written about. I agreed that for the duty roster we would let her know which of my current carers could work part-time and when. And then I made the next appointment with the MD and her PD for Monday afternoon, i.e. for today in a few hours... I'll have to cancel my speech therapy then, but I'm sure Sabrina will understand. My care from 1.8. has sole priority at the moment. Right after drinking coffee. And after smoking.
Between facebook, Xing and email messages and searching for the nursing service, the long-awaited ENT doctor finally arrived on Thursday evening. She scraped out the left ear. Or scraped it. Not exactly pleasant, but not too tragic. Apart from the fact that I hear just as little as before. But the right ear, the one that was completely intact, yes, there she looked in and without even asking me, let alone telling me what she was up to, she poked at it wildly. She kept babbling something about "you have to feel it". The only thing I thought I felt was my eardrum bursting. When she repeatedly asked my nurse if I was sure I wasn't taking blood thinners, I really wanted to know what was going on. No, it would only bleed from the ear canal in patients on blood thinners. Then she can't go on there now. Put a compress on, it's supposed to come off after six hours. She'll be back on Monday evening. She won't make it before then. What about me? I'm practically deaf now. I can hear a little on the left. But only muffled, very soft and only light sounds. On the right, it's dead. Even today. I have records for 500,- € in my shopping cart, but why should I order them now that I can't hear anything? Grumble. It works for me.
Old care service unreliable as ever
On Friday, my otherwise good mood is dampened even more. I get an email from the manager of my nursing service, which I hope to start in a week. Unfortunately, she can't write the duty roster as planned because no one has called her to tell her about the possible duties of the part-time workers (i.e. all my current carers) as promised.
If I could sit, it would have been on hot coals ever since. I'm curious to see what tomorrow will bring. Today, then. Later. Let's assume it doesn't mean anything that I haven't heard anything since Friday. I've had enough for today. Just inhale, then cranberry juice on super ice and medicinal cannabis are waiting for me. Good night, sleep well?
