Dear Diary,
I had actually resolved to swear less. And what ideas do I come up with? Yeah, I create a new category called "Upset". That's what I call failing with a bang.
But I also have topics on the table all the time that you can only shake your head at. The first reactions within ten minutes show that I'm not alone in my opinion.
What is it about?
Justified question. It's actually quite simple. After about every single order that my nursing service took over for me "because that's the way it is" went wrong, I now take care of it myself again. Because it really is a problem when medicines that take a lot of getting used to suddenly run out. Forced "cold turkey", that's what it is, doesn't necessarily help my metabolism.
It also gave me a lot of pleasure in the times before the PEG when I was out of the kind of food I was craving. As if I cared about the taste, when I could have been climbing the walls. No, it was always about the ingredients. For three equally relevant reasons
- Stomach tolerance varies greatly from food to food. As a source of food and energy "on top", I have already started drinking Fresubin (medical drink food) in 2019. Since I have been eating a vegan diet, I can no longer tolerate any products that have been enriched with fish oil for the sake of "healthy" fats.
- There are also drastic differences in saliva production. Generally speaking, one can say that the more milk protein there is, the more slimy and sticky secretion the body produces. For me as a vegan by conviction, it is an ethical problem anyway that there is no high-calorie, fibre-containing drinking food without animal products.
Occasionally, you can find something that is based on soy. But with manufacturers like Nestlé, I don't even want to know how much rainforest was literally burned for one bottle. And how much fuel the plane from South America to Europe consumed. Or how many sea creatures have suffered psychological disorders from the noise of ships. Or how many whales came under the bow or the propeller and died in agony. Or, or, or... the question does not even arise because I am allergic to soy. - The difference between tube feeds (and classic sip feeds) is not only in the calorie content. In particular, there are many products without fibre. You can eat five of these and I'm not the least bit full. I might feel sick, but I don't feel full. Where would that come from? Unfortunately, not all of my carers understood this until the end. It happened not only once that I was given a pure fat booster instead of actual food. And then they wonder why I have such a disturbed digestion.
Another classic are the regular consumables such as air filters for ventilation and Cough Assist. Both devices are used several times a day or continuously. For hygienic reasons, the filter has to be changed daily. So we need about 60 of them per month. So with the only available pack size of 30 filters, we need... drum roll... right, two packs per month. I don't know which is sadder. That there are months when we had more than 20 filters left, or months when they suddenly ran out completely unexpectedly. And when you have to place a special order with the supplier, you can easily expect three, four or even five days. Working days, mind you, which in this industry, in my experience, means Monday at noon until Thursday in the late afternoon.
And so it goes through all areas of life. As soon as my care service placed an order, either too few goods or too many arrived. And in most cases nothing at all, because they forgot to order at all. Oh wait, or the wrong thing came. Tubes for completely different ventilation systems like mine. And goose gurgles that fit neither one side nor the other of my tubes or equipment. For years I ordered there and never had such problems. Since I stopped ordering myself, not a single one has gone smoothly. And yes, they have certainly tried to correct mistakes. But when I realise that a follow-up order for two standard products requires three phone calls plus a home visit, I go crazy. And in the end it came back to me because the order was placed in my name without my knowledge and they contacted the supposed customer for further enquiries. So much for that.
And it's happening again.
Now I have found exactly one drinkable food that I tolerate well at any time of day and after which the secretion production is at a well, let's say just tolerable level. One food, highly calorific and rich in fibre, as well as suitable for exclusive nutrition with an exaggeratedly energy-rich diet.the emphasis is on "one".
I thought, with all the varieties from before, it was too much to ask me to inform myself when opening the last box. Because that was my standard protocol. Open the last box? Informing me. I request a prescription, the practice sends it to the pharmacy. The pharmacy orders the box and delivers it to my home as soon as it is available. Unfortunately, my drinking food is also affected by these ominous supply chain problems. Some orders simply took a good two weeks. I am still waiting for the mango variety to be delivered.
Then I had the idea that it could be simpler, no, it would be simpler if there was only one type. And so, for weeks now, I've only had 2 kcal fibre chocolate. In the morning, at noon, in the afternoon and in the evening. Sometimes even once at night. It's all on the PEG anyway, so fuck it.
And it's happening again .
And then again.On my huge Samsung The Sero display, the first item in my handover is now:
I have taken great pains to formulate it in a non-judgmental and diplomatic way. Which is admittedly difficult for me, given the impending famine.
This morning, the night service tells me that I have to order food again. So, completely unaware of the acute urgency, I requested the usual prescription from my family doctor. That was the end of the matter for me, so to speak.
In the afternoon, the day service explains to me that there are only three bottles left for tomorrow. That means that it has been forgotten again. My nurses really don't have to do much anymore. I take care of everything. They just have to tell me when something runs out. And even that hasn't worked now for the second time this year. And it's only April.
Long story short: Amazon would deliver in three days at the earliest. One online pharmacy can do it in two. Provided, of course, that it is in stock, which is rarely the case these days. Today you can consider yourself lucky if you get a delivery at all. As we all know, hope dies last, so let's hope that my pharmacy delivers within 24 hours. Probably not, but what choice do I have? That this was only the beginning of a story that would once again cost me a lot of money was not foreseeable at the time...
