{"id":6126,"date":"2023-04-29T20:06:36","date_gmt":"2023-04-29T18:06:36","guid":{"rendered":"https:\/\/paddys.de\/?p=6126"},"modified":"2023-04-30T00:41:26","modified_gmt":"2023-04-29T22:41:26","slug":"wer-braucht-schon-nahrung","status":"publish","type":"post","link":"https:\/\/paddys.de\/en\/wer-braucht-schon-nahrung\/","title":{"rendered":"Who needs food?"},"content":{"rendered":"Reading time<\/span> 6<\/span> Minutes<\/span><\/span>\n

Dear Diary,<\/p>\n\n\n\n

I had actually resolved to swear less. And what kind of ideas do I come up with? Yeah, I create a new category called \u201eexcitement\u201c. Now that's what I call failing with a bang.<\/p>\n\n\n\n

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. <\/p>\n\n\n\n

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What is it about?<\/p>\n\n\n\n

Justified question. Quite simple in itself. After about every single order that my care service has taken over for me \u201ebecause that's the way it is\u201c has gone down the drain, I'm now taking care of it myself again. Because it really is a problem when medicines that take a lot of getting used to are suddenly empty. Forced \u201ecold turkey\u201c, which is all it is, doesn't necessarily help my metabolism. <\/p>\n\n\n\n

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<\/p>\n\n\n\n

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  1. Stomach tolerance varies greatly from food to food. I already started drinking Fresubin (medicinal drinkable food) in 2019 as an \u201eon top\u201c source of nutrition and energy. Since going vegan, for example, I can no longer tolerate products that have been enriched with fish oil to provide \u201ehealthy\u201c fats.<\/li>\n\n\n\n
  2. 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.

    Very occasionally you can find something based on soya. But with manufacturers like Nestl\u00e9, I don't even want to know how much rainforest was literally burnt to make a bottle of it. And how much fuel the plane from South America to Europe consumed. Or how many sea creatures have suffered mental disorders from the noise of the ships. Or how many whales came under the bow or the ship's propeller and died in agony. Or, or, or... the question doesn't even arise because I'm allergic to soya.<\/li>\n\n\n\n
  3. 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.<\/li>\n<\/ol>\n\n\n\n
    <\/div>\n\n\n\n

    Regular consumables such as air filters for ventilation and Cough Assist are another classic. Both devices are used several times a day or continuously. For reasons of hygiene, the filter has to be changed every day. We therefore need around 60 per month. With the only available pack size of 30 filters, we need... drum roll... that's right, two packs per month. I don't know what's sadder. That there are months when we have more than 20 filters left or months when we suddenly run out completely unexpectedly. And you have to reckon with three, four or even five days for a special order from the supplier. Working days, mind you, which in my experience in this industry means roughly Monday lunchtime to Thursday late afternoon.<\/p>\n\n\n\n

    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.<\/p>\n\n\n\n

    <\/div>\n\n\n\n

    And it's happening again.<\/p>\n\n\n\n

    I have now found exactly one food that I can drink at any time of day and that keeps my secretion production at a tolerable level. A food that is high in calories, rich in fibre and suitable for exclusive nutrition with a diet that seems overly energy-rich, with the emphasis on \u201eone\u201c.<\/p>\n\n\n\n

    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.<\/p>\n\n\n\n

    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.<\/p>\n\n\n\n

    And it's happening again .<\/p>\n\n\n\n

    And then again.On my huge Samsung The Sero display, the first item in my handover is now:<\/p>\n\n\n\n

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    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.<\/p>\n\n\n\n

    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.<\/p>\n\n\n\n

    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. <\/p>\n\n\n\n

    <\/div>\n\n\n\n

    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 count yourself lucky if you get any deliveries at all. As we all know, hope dies last, so let's hope that my pharmacy delivers within 24 hours. It's unlikely to happen, but what choice do I have? At the time, I couldn't have foreseen that this was just the beginning of a story that would cost me a lot of money...<\/p>\n\n\n\n

    <\/div>","protected":false},"excerpt":{"rendered":"

    Liebes Tagebuch, eigentlich hatte ich mir ja vorgenommen, weniger zu fluchen. Und auf was f\u00fcr Ideen komme ich dabei? Yeah, ich erstelle eine neue Kategorie namens \u201eAufreger\u201c. Das nenne ich mal, mit Pauken und Trompeten zu scheitern. Ich hab aber auch st\u00e4ndig Themen auf dem Tisch, da kannst echt nur mit dem Kopf sch\u00fctteln. Dass ich mit meiner Meinung nicht allein bin, das zeigen schon binnen zehn Minuten die ersten Reaktionen. Worum geht es? Berechtigte Frage. An sich ganz einfach. Nachdem ungef\u00e4hr jede einzelne Bestellung, die mein Pflegedienst \u201eweil es so \u00fcblich ist\u201c f\u00fcr mich \u00fcbernommen hat in die Hose…<\/p>","protected":false},"author":1,"featured_media":6667,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_lmt_disableupdate":"","_lmt_disable":"","_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"_uf_show_specific_survey":0,"_uf_disable_surveys":false,"footnotes":""},"categories":[1],"tags":[38,35,36,163,59,37],"class_list":["post-6126","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-posts","tag-als","tag-amyotrophelateralsklerose","tag-amyotrophiclateralsclerosis","tag-dasistals","tag-pflegefehler","tag-seltenekrankheiten"],"acf":[],"modified_by":"Ruppelt Patrick","wps_subtitle":"","_links":{"self":[{"href":"https:\/\/paddys.de\/en\/wp-json\/wp\/v2\/posts\/6126","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/paddys.de\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/paddys.de\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/paddys.de\/en\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/paddys.de\/en\/wp-json\/wp\/v2\/comments?post=6126"}],"version-history":[{"count":17,"href":"https:\/\/paddys.de\/en\/wp-json\/wp\/v2\/posts\/6126\/revisions"}],"predecessor-version":[{"id":6672,"href":"https:\/\/paddys.de\/en\/wp-json\/wp\/v2\/posts\/6126\/revisions\/6672"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/paddys.de\/en\/wp-json\/wp\/v2\/media\/6667"}],"wp:attachment":[{"href":"https:\/\/paddys.de\/en\/wp-json\/wp\/v2\/media?parent=6126"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/paddys.de\/en\/wp-json\/wp\/v2\/categories?post=6126"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/paddys.de\/en\/wp-json\/wp\/v2\/tags?post=6126"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}