Part 2 of 3
Problems that mean the world. Can. But definitely do when they do.
We were in trouble. And I start an extra post for that? As a matter of fact, yes. Over the past weeks, months and years, I have repeatedly experienced the lack of understanding about my ALS disease. Especially among medical professionals. Nurses first and foremost. I find it hilarious when I am personally praised for having so many bowel movements. Quite apart from the fact that I'm not in my fourth year, but in my 44th, and the praise has the greatest effect anyway. No, what I mean is the fact that I can't really influence what happens. Or it doesn't. What do I mean? Let's get into it.
At first you might think, what the hell is this guy talking about again? Fair point, talking about it is much harder for most people than making (or building) it. With your favourite ALSler, it's the other way around. In itself, I have virtually no abdominal muscles left. Everything that used to exist in the abdominal, trunk, hip and chest areas has pretty much atrophied. I can't consciously control anything any more. But that also means that I can't push, regardless of posture or position. The bowel movement has to be convinced in another way that it wants to leave my body.
But for this to happen, everything has to be digested first. As far as this is concerned, I have tried so many different sip feeds and tube feeds that I can't even remember how many there were in the end. In my case, this is complicated by the fact that I am a vegan by conviction. If anyone has any tips on how I can get to at least 2,000 kcal with a maximum of 1 litre of vegan food and without soy, I'm all ears. I have found a few oat-based products, but they don't meet my calorie requirements. I can't have soy because of allergies, and apart from that it seems illogical to me to do without cow's milk proteins for reasons of animal welfare and environmental protection and to replace them with a product for which half the planet Earth is being cleared by fire along with its wonderful wildlife.
I have also boycotted products with palm oil. I simply cannot reconcile it with my conscience to be responsible for the death of billions of partly highly intelligent, sentient creatures through burning. If you don't know what I'm talking about, don't sweat it. Such unpleasant topics like to be hushed up. Like the torched parents of the five orangutan babies in a photo taken by Robert Marc Lehmann, whom I hold in extremely high regard. Looking at the photo and knowing the story behind it tears my heart out. And I don't even know if it isn't better to be burnt alive or to be shaved, tied up, made up and sold as a hooker to the workers on the palm oil plantation. Gulp. Yes. Exactly.
For licensing reasons, I'm probably not allowed to show this here, but just ask Dr. Google if the topic catches your fancy.
What I can link to is one of Robert's YouTube videos on the subject. Decide for yourself if you want to see it. You can find the video here: https://youtu.be/z8K72iGp1OI
Shit.
Really true.
You see, it still fits the headline. I'm always rambling, my ass.
What an irony, no, wrong word... schizophrenia? I don't like it either. Anyway. The terminally ill ALS patient thinks shit, what is wrong with the world and with humanity? That! That's what makes me sad. Not my ALS. Not that I can't do many things like I used to. Of course I miss getting up at five in the morning and experiencing the sunrise while jogging in the forest. But does that make me sad? Just at the moment when I think about it, maybe for a moment. Okay. But the way we - consciously and unconsciously - rape nature, that, yes, that makes me sad. Truly and permanently. And as I write here, my carer reveals to me how seriously sad he is because the Bavarians have gathered some game and what the implications of that are. I believe him that this makes him truly sad. That's what I meant by schizophrenic. Or something like that. I don't want to make a judgement at all. Three times not pejoratively. But it's admittedly hard for me to find the right words in response to the repeated question of whether everything is really okay. I would look sad. What am I supposed to explain when the things that are important to you are so far apart?
Enough of this sad excursion into my emotional world. Let's at least finish this chapter quickly. I won't be able to finish the part 3 planned for today. So, problems. Yes, problems. "Problems". Because all this is not enough harassment of my body against me, of myself, it is then necessary to consider the numerous sideshows. Stree, fatigue, visitors present, positioning, possible decubiti and so much more.
And that means what exactly? Why did we do the last few minutes to ourselves? To understand the big picture. To realise that I can no longer shit "at random". Because only when you know all the causes can you counteract them. To find solutions. That's exactly what we'll deal with next time.
