aka Health Update September 2023
Where do I start, where do I stop? The Spots over the buttocks disappeared as they had come. What my toe looks like, you may have seen yesterday. And you were probably shocked. No? Oh, I haven't seen it. But you shouldn't miss the photo series. Wink wink. Today, however, he looks pretty good. God knows why it fluctuates so much from day to day.
Otherwise, well, the usual familiar problems. My ear is still not good. Somehow the pressure equalisation doesn't work properly in my opinion. The ENT doctor and the family doctor have looked at it and everything is fine from a medical point of view. Nothing inflamed, nothing blocked, nothing out of the ordinary. I can hardly hear anything because my left ear is constantly in flight mode and I can only hear my own breathing. That covers everything. Radio, audio book, videos, forget it. Not being able to make music is sad. Not being able to listen to music is unacceptable. I'll ask my ENT doctor to see me again.
Then there is another never-ending story that is always said to be unchanged. My skin, the tissue underneath and I see it differently. On the left a photo from the beginning of the week, on the right one day later. Same EarThe same light, the same camera and the same photographer. On the day of the left photo, the mask was much too tight. On the day of the second photo it was okay. And on the bottom photo, again a day later, the mask was sitting as it was meant to. So if I'm the only one who sees the difference, I assure you, I feel it.
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Yesterday, a carer asked me what I would mean if I could do anything I wanted again. The first five things.
He didn't believe my answer. I could only think of two. Going out for 90 minutes and running 18 km. Does that only count as one thing? All right, then play the piano. That's where it stops. I would have to make an effort for more wishes. A vegan falafel kebab with extra hot sauce would be awesome. Damn. Now I'm in the mood for salad. Now I feel like a salad. Hey, I seem to be the first ALS patient in the world who lives vegan out of conviction. Well, from the idea. That means, despite an energy requirement of approx. 40 kcal/kg body mass, complete renunciation of products for the production of which animals have to suffer. No soy, no palm oil, no dairy products anyway. That's not so easy. In the end, my diet is now based on pea protein, chickpea protein, carob seed protein, hemp protein, maltodextrin and Extreme Bulletproof Coffee (espresso with MCT oil, MCT powder and domestic ultra-fine granulated sugar, which I order from a confectioner in Vienna). Why no one from nutrition counselling suggested this to me... Are they probably all vaccinated from Nestlé and Fresenius. We have always done it that way. Yes, that may be so. But that doesn't make it right or better.
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Then there's the brevity of the spice, a pleasantly unpleasant thing. Today, after a long time, I had a small panic attack, which manifested itself in a pulse that went from around 85 to 132 within seconds. The good thing about it? For the first time, I managed to trick my brain into stabilising my pulse within no more than five, maybe six minutes. It doesn't sound dramatic, but so far we haven't been able to do that so quickly in such cases, not even with Tavor Expedit and morphine under the tongue. So I found today an interesting experience on an otherwise not very memorable day.