It was so well prepared and planned. After last year fell through, everything should be better this year 2025. I've finished so many pages of text that some of it will be set to music - because nobody reads that much text. And then there was my editor, who wanted to see one or two passages blacked out. So yet another revision of texts, my favourite thing to do on days like these when writing is hard on the eyes.
I wanted to report on so many wonderful things. I have so many pages ready in my virtual drawer - just waiting to be embellished with original images. So many great shots like here in the article on the Sumatran rainforest should be added to each subsequent article. Simply because the world is so beautiful and because it is worth showing. As long as we still can.
Collage Sumatra Rainforest Loiser
As long as we still can. Good keyword. My eyes and my body couldn't and couldn't do it anymore. I have been writing this report for a shockingly long week. For a fortnight now, I have been lying in the intensive care unit of the Barmherzige Brüder Hospital in Munich, which has been given the difficult task of fixing me. For a year now, I have been complaining of eye pain, which, if it does not manifest itself as conjunctivitis (report here)1 Conjunctivitis 🌐 https://paddys.de/konjunktivitis-oder-was/ or torn cornea (report here)2 Ready for hospital at Christmas (part 1+2) 🌐 https://paddys.de/vergangenheitsinterview-03-krankenhausreif-an-weihnachten-teil-12/ , later turn out to be a cluster headache.
Paddy in hospital again
For probably the first time in my life, I'm quoting a Wikipedia article that was recommended to me. And what can I say, it could have been a case history of myself, really true. That is so blatant. The scenario described on Wikipedia really does fit my (right) eye like the fist of fate. It's written there:
„Cluster headache is a primary headache disorder. It manifests itself, among other things, as extremely severe pain in the area of the temple and eye, which occurs strictly on one side and in attacks.‚3 Cluster headache 🌐 https://de.wikipedia.org/wiki/Cluster-Kopfschmerz
- check
„The term cluster refers to the common characteristic of this form of headache, which occurs periodically in clusters. This can be followed by symptom-free intervals lasting months to years.“4 Cluster headache 🌐 https://de.wikipedia.org/wiki/Cluster-Kopfschmerz
- check
„The condition is also known as Bing-Horton neuralgia, histamine headache, cluster headache (CH; English headache ‚headache‘), suicide headache and erythroprosopalgia (ancient Greek ἐρυθρός ‚red‘; πρόσωπον ‚face‘; ἄλγος ‚pain‘).“5 Cluster headache 🌐 https://de.wikipedia.org/wiki/Cluster-Kopfschmerz
- check
„The pain is described as unbearable, tearing, drilling and sometimes burning. It usually occurs around the eye, less frequently in the area of the temples and the back of the head. “6 Cluster headache 🌐 https://de.wikipedia.org/wiki/Cluster-Kopfschmerz
- check, check, check and check. I can't believe I didn't think of that myself. Seriously. The consensus is overwhelming. When I read the article, I felt my jaw drop. And again. And again. Once more. And again.
„An urge to move, physical restlessness or agitation is particularly typical during headache attacks. “7 Cluster headache 🌐 https://de.wikipedia.org/wiki/Cluster-Kopfschmerz
- It's really not my style to comment approvingly on entire Wikipedia articles, but... check
„In addition to the pain, at least one of the following accompanying symptoms occurs on the painful side of the head:
- Reddened conjunctiva of the eye (conjunctival injection) and/or a watery eye (lacrimation)
- Runny and/or blocked nose (nasal rhinorrhoea and/or congestion)
- eyelid oedema
- Sweating in the area of the forehead or face constricted pupil (miosis) and/or a drooping eyelid (ptosis)“8 Cluster headache 🌐 https://de.wikipedia.org/wiki/Cluster-Kopfschmerz
- check. Full house. But every single point. Even things like sweating in the forehead area - you can't make something like that up and fake it in its entirety. It all fits. As if my complaints had been queried in order to write this Wikipedia article. So blatant.
„Nausea, sensitivity to light and noise also occur regularly.“9 Cluster headache 🌐 https://de.wikipedia.org/wiki/Cluster-Kopfschmerz
- Nausea no, but sensitivity to light and noise to the power of two: check
„The pain during a cluster headache attack is one of the most severe pains imaginable for humans, alongside trigeminal neuralgia. It is often given the highest level on a pain scale of 0 to 10. Female patients describe individual attacks as worse than the pain of childbirth.“10 Cluster headache 🌐 https://de.wikipedia.org/wiki/Cluster-Kopfschmerz
- I cannot judge the latter. Far be it from me to moan. But the pain is severe enough to drive me to hospital. What can I say... check.
And as a precaution to the Wikipedia team, you do a great job, I'm always happy to donate. Far be it from me to steal your texts. If I go overboard with my quotations, please be so kind as to send me a brief e-mail and I'll correct it immediately. We don't need lawyers for that, do we?
Photo: Marion, Mum, Sis (from left to right) ... in bed with Paddy
Of course, we don't want to neglect my difficulties, some of which I have known about for a long time, which are not per se the result of my underlying condition of amyotrophic lateral sclerosis (ALS) (report here)11 Prologue 🌐 https://paddys.de/prolog/ and cluster headache (CH) (reports here)12 My eyes: My thesis - Simple. Logical. Tragic. 🌐 https://paddys.de/meine-augen-meine-these-simpel-logisch-tragisch/ 13 Pain subsides 🌐 https://paddys.de/schmerz-lass-nach-2/ 14 Ready for hospital at Christmas (part 1+2) 🌐 https://paddys.de/vergangenheitsinterview-03-krankenhausreif-an-weihnachten-teil-12/ 15Ready for hospital at Christmas (part 1) 🌐 https://paddys.de/vergangenheitsinterview-03-krankenhausreif-an-weihnachten/ 16 Conjunctivitis or what 🌐 https://paddys.de/konjunktivitis-oder-was/ but which would simply not exist without ALS. Just thinking about purging, I have written entire essays about it (reports here)17 2:1 🌐 https://paddys.de/21-2/ 18 The three-day rule 🌐 https://paddys.de/die-drei-tage-regel/ 19 The thing with the thing 🌐 https://paddys.de/die-sache-mit-der-sache-3/ . A feat of strength. Or my toenails (reports here)20 Don't hurt my feelings. 🌐 https://paddys.de/no-pain-no-fun/ 21 Burns under my nail. 🌐 https://paddys.de/brennt-mir-unterm-nagel/ 22 Health update 10/2023 🌐 https://paddys.de/uebergabe-2-0/ 23I'm doing well 🌐 https://paddys.de/es-geht-mir-gut/ , which have grown back and re-grown after the last surgical removal (report here)24 Open letter to Wolfratshausen Hospital 🌐 https://paddys.de/offener-brief-ans-kh-wolfratshausen/ 25 Cheerful hypocrisies 🌐 https://paddys.de/froehliche-scheinheiligkeiten/ 26 Rainforest, failure, proof and all that 🌐 https://paddys.de/regenwald-scheitern-beweisen-und-so/ . After they had to bump against the end of the bed during the transfer in hospital, both big toes are bleeding and festering, on the right and now also on the left. Or a completely different problem, my permanently inflamed and bleeding gums (report here)27 Oral care 🌐 https://paddys.de/mundpflege/ [/footnThe ?ote]27 Really now? Are you serious? 🌐 https://paddys.de/echt-jetzt-dein-ernst/ 28 Adé beetroot juice. 🌐 https://paddys.de/rote-beete-ade/ 29 Medium Rare is for wimps. 🌐 https://paddys.de/medium-rare-is-was-fuer-weicheier/ 30 Count Patricula 🌐 https://paddys.de/graf-patricula/ . That nasty, pungent, acrid taste in the mouth (report here)31 Health update 10/2023 🌐 https://paddys.de/uebergabe-2-0/ , It's also really annoying. And that I now hear so badly (reports here)32 Health update 10/2023 🌐 https://paddys.de/uebergabe-2-0/ 33 Land of construction sites 🌐 https://paddys.de/land-der-baustellen/ that I don't even notice when my music system has stopped playing my Spotify playlist (haven't you heard? Have a look here)34 Radio 🌐 https://paddys.de/radio/ . Okay, one after two others.
Collage ventilation Astral 100 and Cough Assist E-70
Over the past twelve months, the volume of air delivered to the lungs per breath during mechanical ventilation (tidal volume (Vt), tidal volume) has steadily decreased. I remember the documented setting of 485 ml only too well.
And before I know it, you realise and woman, what does woman actually see? Anyway, I can see that it's going to be a long night until I'm through here with all my aches and pains. I'm actually making such slow progress with my writing that I may have written this one sentence here in the future - when I'm lying more or less comfortably, but again with breathing difficulties, in my nursing bed at home.
Breathing difficulties this time only because today is the fourth day in a row that I haven't had a proper bowel movement. Yesterday, after an enema, a little bit that could at best pass for thin cow dung in terms of colour and consistency. More on that later.
Back to the past. And then came the days when the breath volume cracked the 300 ml mark. Stupidly, this is the alarm limit, which means that the machine also sounds the alarm at half past six in the morning - and sometimes even earlier, at four or half past four, when everyone except me is probably in a deep sleep - and puts sceptics in their place: the breathing volume is actually decreasing. We have a problem, cause unknown.
Astral 100 ventilation
Then came the panics.
Shortness of breath. I often complain that the breathing volume is too low. Under the given circumstances, the remedy of choice would normally be „coughing“ on the cough machine. But that...
I was told by my carers that they would all look for another patient if I continued to do so much work. Meaning, for example, that I needed so much coughing. All my sheer years of trying to be a good patient, to give everyone the best possible working environment; not funny, I'm deadly serious damn it, it should be perfect for everyone, but I did something wrong - unseen, unheard, unachieved, failed.
Philips E-70 cough assistant
Change of scene. On the hospital ventilator, the breathing volume is just under 600 ml straight away - a blessing, how marvellous.
After a few days back on my machine and within 30 minutes the volume drops, heavy breathing turns into breathlessness and then full-blown panic.
Long story short: With updated ventilation parameters, it also works straight away with my own two ventilators.
The list of complaints is still pretty long. After two weeks in hospital, which will cost me around €24,000 so far for taking my own carer with me, we are still at the beginning of most of the problems.
This hospital does not have an ENT doctor, as it turns out (only when I am there). The hospital does not have an independent ENT clinic with its own ward and team of doctors, but is connected via affiliated doctors and external co-operation partners.
We actually managed to get an appointment with a competent and definitely likeable ENT doctor. He removed a considerable amount of earwax from my left ear and there was a slight temporary improvement. But the truth is that two hours before the appointment, there was a „pop!“ and I could suddenly hear relatively well. After the appointment, things got a little better. And a few hours later it went „Plopp!“ again. Only unfortunately in the other direction. Everything back to square one. My hearing is as bad as it was yesterday.
Photo: Phil & Sis... in bed with Paddy
A few moons have passed since then. Actually, I shouldn't be writing today because it's not a good day. I've been in pain all day. Whatever happened that yesterday the pain medication seemed to be working, today I seem to feel virtually no effect from the same medication.
I also have particularly bad hearing today. Is there a connection?
Who could I ask about this, someone with an overview of the big picture. I'm sure there is someone, but I can't hear very well. I don't hear anything about what is discussed during the ward round. My sis gives me a daily update, but the flow of information is very unidirectional.
Today really isn't my day. I was given mirtazapine, my sleeping pill, some time ago in the evening - supposedly on doctor's orders. And I'm wondering why I'm already fighting sleep at half past eleven and whether this could be due to an overdose of the painkiller. Well, we'll never know.
That sucks, because it means that tomorrow we'll be testing the same thing as today again - only without the counteracting sleeping pill. Unfortunately, every additional day costs me hundreds of euros for my own care service.
And that wasn't the first time. Last time - the day before yesterday - We had to repeat it because I had been given the wrong painkiller. Just as stupid. Just as unnecessary a drain on my wallet. If my company worked like that, we wouldn't have any satisfied customers for a long time and would be out of business.
And not only for financial reasons would it be an advantage not to prolong our stay unnecessarily. My carers' nerves are on edge. The sooner we are back home - i.e. not only in our familiar surroundings and daily routine, but where there are also amenities such as round-the-clock coffee for €40/kg (here order - unpaid advertising35Einstein 125 - espresso blend from the Vogelmaier coffee roastery 🌐 https://www.vogelmaier.de/online-shop/espresso/einstein-125/ ), a covered smoking balcony and good internet - the better.
The pain, however, is unchanged. At best. I would classify it as 7, although that doesn't actually take into account the fact that I haven't had a pain-free minute since waking up today. It's enough to make you cry.
Collage Einstein 125 - Espresso blend from the Vogelmaier coffee roastery
And another day goes by when I haven't answered so many private messages on WhatsApp, Facebook, Xing and the like because my eyes won't let me. And there's another one. And again. Can you see him too?
My message to you could start something like this if you've written to me or sent me birthday greetings in the last three weeks. Coupled with the worst conscience you can imagine. Which is absurd because, well, it's not like I've been holding much of my own life slash body in my own hands for the past few weeks. To be asked what I I miss that... While my carers remark that it's always just about me. Somehow everything has gone wrong here.
How long have I actually been on the waiting list at the hospital, was it Easter or was it since Whitsun? I was supposed to go to Großhadern first, they have good diagnostics. I was also diagnosed with ALS at Großhadern. But then Großhadern cancelled and recommended that I should go to a clinic with a palliative care unit because of the pain. That seemed logical to me. And again we are waiting and I can be criticised for not making progress. Yes, my nerves were on edge. We need this appointment from the hospital.
So yes, it really was a lot of work „back then“ compared to now, after two weeks in hospital, where at least the panic / breathlessness / anxiety disorder issues are more or less ticked off. I practically don't have to cough any more. In this respect, the hospitalisation has definitely made a difference.
Whether it was necessary to keep me there for a fortnight, more than two weeks in the intensive care unit, where every day starts with a forced light switch-on at six in the morning (even on Sundays, when not even a ward round comes by), I doubt it - but I wanted to stay out of it. And yes damn it, I've forked out over 24 thousand euros for my own carer to come along damn it, I really hope it's about me. Oh yes, I'm just ranting again.
Collage calendar and social media
So in a nutshell: after literally months on the waiting list, the call came and then everything had to stand and go. It seemed as if everything had been forgotten, which is why we organised this circus with weeks of preparation by my GP, with a fire brigade for the stairwell and so on. Another hospital stay, which ended with limbs trapped during the transfer to and from the hospital, a pulled pufi, a torn ventilation tube and my new favourite „you have to hold my head, please, really“ will go down in the history books.
„It's not the first time we've done this.“
Obviously I did, but not with an ALS patient, because otherwise my head wouldn't have just fallen off and banged against the couch (metal).
If I received one euro every time someone told me „this is not the first time we have done this“...
And so I ended up in hospital, where it became a popular sport to move my bed without also moving my computer; or to fall over the stand and not think to ask my carer or myself if everything was OK, or or or or. One morning the cleaning crew ripped out my computer's power cord and it was late into the afternoon before anyone realised that I couldn't speak up - my sister was that someone. She was a great help and I couldn't have coped without her. Not once during the ward round did anyone realise that I had been silenced.
My sister came to the hospital every day and did the talking for me. And „translated“ the alphabet. For most of the time until now, spelling was the only thing I could do, as the search for a suitable painkiller for my eye pain caused all kinds of side effects. From almost amusingly interesting effects such as black and white vision to total eye control failure, there was a lot on offer.
The latter is something we are still struggling with today. Unfortunately, all the painkillers that help with this kind of eye pain seem to have a negative effect on infrared cameras, so that the pupils are not recognised. Which stops the whole thing working. I've had a few (many, too many) days of trying out locked-in syndrome (Locked-in syndrome testimonials here)36 Ready for hospital at Christmas (part 1+2) 🌐 https://paddys.de/vergangenheitsinterview-03-krankenhausreif-an-weihnachten-teil-12/ 37 Happy new year... I can't see anything - twice is better, now LEFT eye defective 🌐 https://paddys.de/frohes-neues-j-ich-sehe-nichts-doppelt-haelt-besser-jetzt-linkes-auge-defekt/ 38 Ready for hospital at Christmas (part 1) 🌐 https://paddys.de/vergangenheitsinterview-03-krankenhausreif-an-weihnachten/ . From my current self-pity, this is a circumstance that I could have done without and in which I do not (yet) feel understood in my daily environment. Not being able to move or express myself, not being asked or even spoken to and, to make matters worse, hearing practically nothing - that's another dimension harder because it's one dimension less.
Illustration Paddy locked in locked-in syndrome
I was discharged with a setting that we will now test for two to three weeks and then adjust if necessary. Good luck, I've only been able to type more than ten characters halfway fluently for three days (today it's been six days, but the last two days I haven't been able to write again), since yesterday morning I've been writing on this topic and nothing else, it's hard to imagine but it's true. With this in mind, I can be forgiven for recycling parts of this text to reply to others who have also been waiting far too long for a reply from me.
That's all I have to say in my defence.
Day i-have-stopped-counting, I have been writing this report for so long.
I would like to say a big thank you to everyone who took part in my fundraising marathon. I was very pleased, especially as the campaign was completely cancelled due to my problems with my eyes. I prepared so much that I couldn't realise after my eyes stopped working in the weeks before my hospital stay.
I'd like to revive the donation marathon, but as long as it takes me eight days to write a text like this and I'm not in the greatest giving mood financially (which would be necessary for campaigns like „if XY then I'll double“)... well, let's see how it goes over the next few days. I'm quite confident that the whole thing could stabilise.
For the first time since I've been in hospital - I've kept out of everything, and it's not easy - I'm getting an overview of everything that's been done. And what wasn't. So. Everyone to their seats. Ready. Not finished? Oh...
1 - Life-threatening potassium deficiency despite mass substitution: Yes, we realise that this is probably the case. We were told that salbutamol has a negative effect on the potassium balance, whereas my laxative Dulcolax (as previously assumed in some cases) does not. This is confirmed by countless laboratory findings. Nobody has been able to explain to me why I have been banned from taking Dulcolax again since the beginning of the week.
2 - daily breathlessness and frequent panic triggered by collapsing respiratory volume: check.
2a - Shortness of breath, however, unchecked since all laxative aids have been cancelled. My stomach is so uncomfortably full and presses so hard on my lungs. Man damn that was soo good when I was discharged from hospital. Why are we going backwards now?
3 - unspeakable pain for multiple reasons: I was visibly surprised that the clinic doesn't even have an ophthalmologist on staff, so the search for the cause was ruled out from the outset. Nevertheless, all the signs are green, because
4 - Pain management leaves room for hope: To be clear, I will never be pain-free again. That's only possible with medication, which they no longer want to give me. Within this framework, however, I am currently confident that we are on the right track. This is meant in a completely non-judgemental way, simply an assessment that I think my doctor agrees with (otherwise please send me a short email).
Photo: Christine... in bed with Paddy. By the way, you can buy my T-shirt here: shop.paddys.com
In the morning I'm sometimes totally exhausted and in the evening I'm in pain again. I still need to do some fine-tuning to get the best out of the circumstances. But it's working. And I still have direct contact to and with my doctor via my sis, who is supporting my change in pain medication even after my hospital stay - a treasure of gold (yes, I don't like gold because of the production costs: environmental pollution, child labour, modern slavery - but in the idiom it's forgiven and she's really good).
5 - Unfortunately, I can't say the same about my digestion. There must have been a good 50 to 60 lab results from the hospital and 1 lab result from home (after discharge), none of which suggested any significant connection between my Dulcolax laxative and low potassium levels. Why all laxatives were removed from my medication plan upon discharge - a mystery. I last had a potassium level of 5, which is very good and incidentally the best potassium level I've ever seen. And that was after three days of rampant Dulcolax consumption. So why all this scaremongering and rolling backwards, laxative bans and breathing difficulties? Oh well, I wanted to be quiet.
6 - The wound management team looked at my toes before they fell victim to the steel edge of the hospital bed. My toes were deemed not worthy of surgery and put in a sock bandage. And then it happened: my foot was cut several times and a little later blood and pus adorned the cityscape. Cityscape, can you still say that?
7 - my gums had a few good days at the beginning of the year when we tried high doses of cortisone - I was generally fine then. The disgusting taste in my mouth was also gone. My toes were also phenomenally well, pain-free, no pus, no blood. But then came the reality. Permanent treatment was not possible. Everything back to square one. We probably didn't even mention it at the hospital. Probably too complicated and too complex. I'm just not a good patient after all, I'm probably just too complicated.
8 - good night. I'm sure I've forgotten something. The most important thing has been said, but not clearly enough: thank you that I can finally breathe freely again. It no longer feels like I'm on a ventilator, but breathing - enjoy it for as long as you can.
Thanks to climate change, there are already places and times on this planet where the human body is no longer able to regulate its body temperature by sweating and breathing. And these places are becoming more and more quickly. Without wanting to open a can of worms, that's how it is. Measured. No opinion. Europe is becoming a climate change hotspot. Enjoy being able to breathe cool, clear air in the morning. It won't always and forever be like this.
Oh no, number 9 - I almost forgot one of my biggest problems. It's happening to me now. It could be my age, I'm a year older now. Of course, I'm talking about my poor hearing. Maybe it's also due to my age. Just kidding.
There is hope. No, not for me. There are really great nature and species conservation projects that counteract climate change. I introduced you to our rainforest in Sumatra before I was hospitalised. Many more will follow in quick succession.
And you know what, we're just going to do it now so that I reopen my telethon. Here and now with a duration until the evening of 24 December this year. Then on 25 December 2025 we'll be giving presents.
Until then, I've already prepared a few surprises. The first one starts this week. So it's worth staying tuned.
Would you like to put a smile on my face for my birthday? I appreciate every donation, however small or large it may be. Really.
Our „western capitalist“ money is worth many times more in many target countries. With just €1, I can buy a whole square metre of rainforest for you and have it protected forever. Every donation counts. It really does.
That leaves me with just one thing: mea culpa for my late reply. The next time my sister offers to at least use WhatsApp and Facebook, Instagram, Xing, ... oh oh I've got plans these days. The next time Sis offers to reply briefly to everyone to send a sign of life from me, I will say „yes“. You never stop learning. Really.
I give you a big hug
Patrick
