Dear Diary,
It's actually ironic. I never used to have a problem drinking two bottles of water between 15 gin and tonics when I was doing sports or partying. Or at the Wiesn. If I remember, in the best of times I once drank ten Maß, unthinkable today. Today that would be 20% of my body weight. LOL.
But my care service would not be my care service if it did not also throw this wonderfully functioning concept overboard.
Why, you ask?
I have my own theory about this. Increased - subconscious - need for recognition. An ALS patient is the perfect medium for this. There is no effective way to help them. There is no therapy, no medication and no hope of a possible change. So, in other words, one will never be "finished" in care. There will always be something to work on. Improve it, even though there is nothing to improve. The patient's will is secondary. Such "permanent building sites" as I have so beautifully distract from one's own personal problems.
Am I too spiteful?
Maybe.
And I can live with that.
In any case, I can live with it better than with two litres of tea, as it turns out.
I am so tired of these constant discussions with individual nurses, in the past weeks I have only said yes and amen to everything. They don't even agree among themselves. Why should I add my two cents? No one sticks to what I say anyway. The PEG is the best example. It is constantly being reprogrammed. For some, my well-adjusted 160 ml/h is too slow and it is set to 200 ml/h with a commentary about my own colleagues.
The next one changes it back to 160 and asks me why there's nothing about it in the documentary. LOL. As if I know why none of you document properly. Maybe a mandatory documentation standard would help. With the hullabaloo you call documentation, nothing surprises me. They don't even record when I got which laxative and how much. So the patient gets three times the amount. His stomach almost explodes, but we cover it up by making stupid jokes at every opportunity and non-opportunity and being the only ones in the room to laugh about it. Following the motto of starting the handover by saying "Patrick wants two Movicol again today. Hahaha...". Nah, that's just not funny.
Next keeper, new luck. We'll put cranberry juice in it every day for huge sums of money. It's better for your bladder.
Next. Let's just pour in everything we can find somewhere. Like these vitamin B tablets that a naturopath prescribed to me and poisoned me with. That's what the blood values say, with which my neurologist from the Friedrich-Baur-Institute (FBI) approached me, somewhat startled. How a trained nurse can come up with the idea of changing my medication independently, without consultation and even without documenting it, and administering it for weeks on end, is beyond me.
And then, to make matters worse, the smart-aleck nursing officer comes along with her rubbish. Apart from the fact that I find her rude and ignorant - that's just my personal problem - I've eaten her up anyway, at least since she tried to convert me and realise that a life in bed has no quality of life. She clearly missed her job, you don't let someone like that loose on defenceless patients. But that's a subject in itself. Be that as it may, she is of course still very concerned about my condition. Because she knows more about ALS patients than... well, obviously even better than I do. So I have stomach problems? I'll just have to take two litres of caraway tea a day via the PEG pump. Fennel might also work, but in a pinch, until I get some, I'll have to use a chamomile herbal tea. No sooner said than done. I ordered tea for a good three-figure sum.
If only there wasn't a catch. A serious one, unfortunately.
Since I no longer listen to my body, but eat and drink what and when my carers say, I've been feeling pretty crap.
Not only because I have been robbed of a piece of my independence, of which I have hardly anything left anyway. Someone who supposedly has so much experience with ALS patients like the nursing commissioner must know how psychologically stressful it is for ALS patients to be incapacitated more and more.
Also, and this is no exaggeration, I am physically unwell. For months, I have had abdominal pain, flatulence and sometimes cramps in my abdomen almost every day. And they are so frequent and so severe that neither Sab Simplex nor Novalgin or Buscopan bring any relief. But taking morphine every day for that reason can't be the solution either. And the fact that I was even sent by ambulance to the emergency room in Großhadern because of it, that's no solution either.
When I just can't think of anything more, it is helpful now and then to go back a few steps to a time when I didn't even know such problems. And then we think about what has been changed since then. Whether documented or not.
In this case, it is quite simple. We scrap everything my carers claim I "need" and what I "must" do. And replace it with a banal rule that says "Listen to your body". Crass, isn't it? Wink smiley.
Specifically, this means:
- Do not force 2 litres via PEG pressure refuelling, but only when needed and at leisure.
- No more disgusting caraway tea and the like. In fact, not tea at all, but tap water.
- Beetroot juice is eliminated without substitution.
- Cranberry juice is cancelled without substitution.
- If I feel like drinking 10 coffees a day, then I drink 10 coffees.
- Do not give food when I am neither hungry nor have an appetite.
- Pay attention to the medicines noted in my calendar, especially finally stick to the plan for laxatives. If someone pumps me a double or even triple dose of laxatives again, I will independently hire people on the Darknet to throw the carer off the balcony. And then, for a change, I laugh as inappropriately as my carers all too often do. Ha. Ha.
And already I find an unexpectedly quick end to these reflections. Because what can I say? About a week ago, I tried it out like this. Since then I haven't had a single stomach cramp, I don't feel sick or uncomfortable any more. My bowel movements are regular and flawless. Do you want more?