About conjunctivitis, conjunctivitis again and if I tell you now, I'll take all the tension out of it
The Sunday question(s). In conversation with Marion and my sister. The third past interview, recorded on Thursday, 25 December 2024. Completed in the first week of January 2025.
Patrick: How nice that you two are here. Today I'm turning the tables. Today I'm asking the questions. I have to answer a lot of them from dear people and finally explain why I'm not writing. How did you experience my disappearance?
MarionPooh, good question 🤔 At first I thought that something was wrong with Surface or WhatsApp. That has happened before, but the problem could usually be solved relatively "quickly".
However, when I didn't hear anything for a while and didn't even receive an emoji, I started to feel nervous and unsure whether something might be wrong 😕 I had already noticed a few days before the visit that writing was difficult and your eye was red.
And then it just took far too long. Then comes the helplessness. I didn't have a number for the carers and you don't always want to be annoying 🙄 but this uncertainty is just awful.
Then, of course, others ask you if something has happened and you have no answer.
Katrin: I felt the same way as Marion. I'm in contact with you almost every day via WhatsApp, and on Friday a fortnight ago you used an emoji to describe to me quite vividly what your day had been like so far 🤮 ...
I didn't get an answer to my enquiry, which of course makes you worry at some point.
I found out from our parents on Saturday evening that the carer had called them and that contact had been made with the GP. The right eye was probably inflamed and it was difficult to get eye drops at the weekend. But we all had no idea that it wasn't "just" an inflammation ...
Patrick: Then it wasn't just you. I have to admit, I haven't read my messages from the past two weeks yet. It's too exhausting. That's why communication was a dramatic problem at times.
Marion witnessed it live. She was the first one who actually just wanted to visit me for a coffee and what happened next is a full-length story in itself.
Marion: I found out what was actually going on through the communication with Katrin and went to see you myself on Saturday (21 December) to get an idea and see if there was anything I could do to help. The afternoon turned out differently than expected...
The main problem on Saturday was that the painkiller could not be secured until Monday.
And finding someone on Saturday who could issue such a painkiller was very eventful and nerve-wracking.
PatrickOh yes, that's right! In a clinic, strong painkillers such as piritramide (Dipidolor, "Dipi") and fentanyl are commonplace, but in home use without monitoring they are atypical. In my case, however, it is difficult to transport me to a clinic, and transport to a practice for diagnosis is out of the question. For me, everything has to be done at home as far as possible and beyond. That doesn't always work.
We didn't talk about it. Marion, I know you would never drive and let me down. I'm infinitely grateful to you for that. But I've noticed that you've had to change your plans quite a bit, haven't you?
MarionLuckily you have a friend who is a doctor-to-be, so still in training. He came round on Saturday afternoon and already knew about the situation and what it was all about. He looked at your medication plan and reported that he had already called the KVB at midday and explained the situation and that we urgently needed a doctor who was authorised to prescribe BTM. At 3 pm, the KVB told us that a doctor who is authorised to prescribe BTM would arrive within the next hour. The prospective doctor waited until 4 pm and tried to find out how severe your pain was by spelling it out. You could almost see it in your face. Unfortunately, he had to leave at 4.30 pm, but he left me his number and if there were any problems, I could call him at any time. That was a great support.
He also said that if no one comes the next time, we should/must call 112 and explain the situation.
The wait continued....
Yes, I was actually invited to a birthday party where I still had the joint present in the car, but that was beside the point.
I was more worried about your condition.
At around 18:00/18:30, the doctor in charge finally called the carer on site. I took over the call because the carer had other things to do.
In fact, I had never experienced anything like it before and had to be told off on the phone by an ill-tempered doctor that he now had to drive from Neuperlach to Grünwald. The problem is which health insurance company you are insured with and the insurance number.
I then explained to him that a prospective doctor was about to call him and explain everything to him.
The friend was very helpful and said he would call the doctor straight away.
About another 30-45 minutes later (whichever way you chose), an even more cranky doctor came storming in, threw his jacket on the floor, ran to the window and said you need to get some air in here first. He didn't greet you, look at you or anything else, but immediately sat down at the table, blew on tablets, spray and fentanyl plasters and coughed to himself 😡 To be honest, I would have loved to ask him out again.
I told him to please write a prescription on how the carers should give the things. He just grumbled at me that we'd have to sort it out with his GP on Monday because he doesn't know you at all. He didn't understand what I was talking about at all.
Finally, he wrote down a few things and how to take them.
At the end (stay 5-10 minutes) he said goodbye to you and left.
We were pretty stunned and of course you had also witnessed everything, which made me feel the most sorry for you 😢 You could see how frightened you were by it all and how it ultimately led to panic and a rising heart rate😞 Beads of sweat stood on your forehead and tears ran down your face and you were just so powerless and helpless.
The carer then gave you something calming and for your pulse. I waited a little longer until you had calmed down a bit. I said goodbye with tears around 8pm 😞
It was a nerve-wracking situation and this doctor really was a nightmare. How can you be like that to people in such a situation and also to those who want to help.
PatrickAnd despite all our efforts, we didn't get the painkillers we needed. If I hadn't been able to persuade a friend to inject me with some BTM from my drug supply when everything was empty, I would have had to go to hospital.
KatrinIt really was a very tense situation. When the last spray of the painkiller was used up on Sunday, I think everyone was frantically thinking about what to do next.
Fortunately, we ultimately didn't have to rely on the on-call doctor's statement or prescription - because according to his explanation, the spray you are currently using is no longer available, which is why he had written down an alternative pain spray. In fact, the prescribed spray is no longer manufactured. Unfortunately, this all rounds off the experience with this on-call doctor on a negative note ...
After a quick call to the pharmacy on Monday morning, the correct pain spray was fortunately delivered within two hours.
PatrickThe pharmacy would have had painkillers and delivered them if we had just phoned them on Friday.
This information was lost during the handover or was not known to anyone other than me, even though we had spoken about it, I don't realise it. I tried countless times to point this out, but I was not "listened to". By Friday evening, when it was clear that my supply would only last until Sunday, I was ready to go to A&E for treatment. Enduring this kind of pain was not an option.
A little taste of the locked-in syndrome. I don't want to experience that a second time. You're trapped in your own body, you hear everything from the outside world, you feel everything on and in your body, you understand everything. But you are completely paralysed and can't speak.
The smallest details cause you headaches and become a real ordeal. Two lovely people are looking for Dead Sea salt for your footbath and turn the whole flat upside down. Well, I really mean the whole flat. Every single room. You feel your heart racing, feel your pulse rising, feel your blood pressure in your ear under the high heartbeat. You hope that someone will soon ask you if you know where the salt is. But nobody asks you.
I don't even want to think about problems that affect my acute medical care. They'll break you.
Marion: Of course, that's also a "mistake" on our part. Instead of asking you where it is, we look for it first. We don't want to burden you with something like that, but then we don't realise how it goes up and down in your head.
We then found something white crystal-like in a bag and the carer said it looked like salt for the street. I just thought that didn't make any sense and tried it. Definitely not salt 🤣 so we asked you if it was for the footbath. And you always know where something is, even though you never see it.
Small side note. The carer prepared the footbath and placed it in front of the bed. I, who was already in a tizzy because of the situation, then got right into it 🤣🙈
PatrickSorry to laugh, but even when he put the bowl there I wanted to tell him that it wasn't a good idea, but well, nobody listens to me...
Marion: I was just thinking, of course, what else 🤷🏼♀️
Patrick...I actually found the communication method with spelling quite good. But the practical application doesn't seem to be as easy as I thought.
Katrin: When I came to visit you for Christmas on the Sunday before the holidays, I first watched your carer very attentively as he communicated by spelling. He recited the ABC relatively quickly and you signalled the corresponding letter. This then resulted in words or whole sentences. But when I tried it myself, I think you had to be pretty patient with me. 😅 The first few times, I often missed the letters. Or by the end I had forgotten which letters I started with. 🙈
Your team leader then gave me the tip that I had to concentrate on your eyebrows for your sign. I also opened my notepad on my mobile phone to write everything down.
Marion, I think you actually found the letter method relatively easy right from the start, didn't you?
Marion: I actually didn't find the communication with the spelling that bad. I remembered that from my dad. However, ma underestimates how quickly you forget letters that have been "named" and are supposed to form a word.
You'll be glad to have a pen and paper again 🤣
Katrin: I think everyone had to get used to the current situation first - that everything essential is asked first, such as air, suctioning, coughing, positioning, and if that all fits, that you spell. With each new situation, you adapt the sequence or add new points. Everyone must always be on the same level so that you don't have to repeat it over and over again. I can imagine that explaining the same thing over and over again is also super tiring.
You now have a very clear system for spelling, as you explained to us:
"If I look left right, it means I want to write something.
If I look left and right when writing, it means back.
If I look to the left and right when reading aloud, it means error.
When I look to the top left, the word ends.
And when I look to the top right, we've finished spelling.
Bottom left means you can start spelling at k, i.e. k l m n o etc.
And there's a dot at the bottom right."
Marion: As I said, I already knew about spelling from my dad. That's why I think I might have found it a little easier. But sometimes you're also unsure about a word (for example the 3rd letter). Then I sometimes repeat the first two to be sure.
PatrickNow we're talking all the time about the effects on communication, maybe we'll tell our readers what I actually had.
MarionPooh, Katrin can probably tell you that much better, as she was there when the ophthalmologist was there 🤔
At first I thought it was an inflammation of the eye and a very helpful and nice ophthalmologist then discovered an incredibly painful tear in the lens with the help of a contrast agent. I hope I have reproduced this correctly
Katrin: If you look back in the blog, you wrote about "conjunctivitis or what" in November - perhaps these were even the first signs that something was brewing? In any case, the ophthalmologist diagnosed a tear in the cornea of my right eye during my home visit in mid-December. Initially, however, it was thought that the tear would heal within two to three days. When this was not the case, you were given a therapeutic lens in addition to drops, eye gels and painkillers. This acts like a bandage and reduces the friction between the eye and eyelid.
However, the gel often made your eyes blurry so that the eye control system didn't recognise your pupils and you were unable to write. Hence the method of spelling - which of course only works when you are with someone and communicating via WhatsApp, for example, was not possible for many days.
However, the ophthalmologist had explained to us that this hellish pain would unfortunately continue. It is comparable to being stabbed in the eye with a knife. It really is madness!
The therapeutic contact lens helps a lot and will probably stay in for a few more days to relieve the eye as much as possible
Patrick: The comparison is unfortunately true. Until then, the worst pain I knew was the pain I experienced after my operation to insert the cannula, when I had to repeatedly manipulate the open, bloody game meat in my windpipe. That topped my eye.
Here is a photo of the torn cornea on the day of diagnosis. With every blink, the eyelid was stuck to the cornea. It's such a disgusting pain. I feel really sick when I think about it.
The yellow colour is a contrast agent that my ophthalmologist dripped onto the pupil to make the damage visible. The yellow dye runs on the cornea, except in areas with lesions, where it settles. The photo shows it in the lower part of the pupil.
When I saw the picture for the first time, I didn't see it at all. The pain was so bad that I couldn't open my eyes and saw everything blurred. When I saw the pictures a few days later, I couldn't see anything either because my vision was blurred most of the day and when I had a few good minutes, it was and still is "time for drops". Antibiotics, callus repair gel, moisturising drops, rinsing, ...
PatrickThe treatment plan is quite a challenge. Can anyone else get it right?
MarionPuuuh 🙈 As far as I know, there are two different eye drops. The ones that are given every hour and the others every 2? I'm not sure at the moment. There is also a cream.
One is eye drops that moisturise the eye and the other is antibiotics. Although, just thinking 🤔 do you think you get one every 20 minutes and the other every hour?
Just thinking about what it was like when it was Tuesday. And then came the next piece of bad news. However, I was amazed at how well you were able to write on Tuesday and that things were actually looking up.
KatrinI also remember two eye drops that were given every 60 minutes, i.e. alternating every 30 minutes. In addition, the antibiotic drops were given every 4 hours as long as the therapeutic contact lens was in. At night, a gel should also be used - or even better Bepanthen eye cream, but unfortunately these smear the eyes so much that you could no longer use the eye control.
Patrick: Which brings us back to the subject of communication. It will probably be a few more weeks before I can write quickly and at any time as usual.
Katrin: The fact that the left eye is now also affected is truly unbelievable. 😨
The artificial tears were also regularly administered into the left eye, the eyes were no longer rubbed and always treated with the utmost care.
But the left eye was probably really too stressed and had to compensate for the right eye. The dry winter air and, of course, the heating certainly also contributed to this.
PatrickBut at least my team of doctors is damn good. I'm so happy about the great support I get from this side.
MarionI also have to say that the medical team works really well from what I can see 👍🏻 Above all, the ophthalmologist really feels like she is available at all times and is very helpful
KatrinYes - you really don't find such a dedicated doctor every day!
I think the urologist also comes regularly, and the team at the GP practice is usually the first port of call. The speech therapist also comes once a week. The pharmacy is also part of the permanent team that provides care, which is indispensable, especially because of its home delivery service.
Patrick: We could hardly end this round any better. Thank you for sharing your thoughts with me.
You can find the background to this and how the idea came about in this article here: The past interview experimentt. Always on Sundays.
