{"id":6830,"date":"2023-05-12T02:21:00","date_gmt":"2023-05-12T00:21:00","guid":{"rendered":"https:\/\/paddys.de\/?p=6830"},"modified":"2023-06-16T12:07:42","modified_gmt":"2023-06-16T10:07:42","slug":"dein-koerper-eben-genau-nicht","status":"publish","type":"post","link":"https:\/\/paddys.de\/en\/dein-koerper-eben-genau-nicht\/","title":{"rendered":"Your body? Exactly not."},"content":{"rendered":"Reading time<\/span> 4<\/span> Minutes<\/span><\/span>\n

People just don't want to believe me when I say that I'm not hungry or have no appetite right now and therefore don't want any more drinkable food.<\/p>\n\n\n\n

People simply don't want to believe me when I claim that 1.5 litres of the finest Munich tap water is enough for me via the PEG until 4 pm. I don't feel like drowning.<\/p>\n\n\n\n

People just don't want to believe that it doesn't do me any good at all to take another 400 kcal tube feed before sleeping. It simply doesn't give me anything when my stomach and intestines are busy all night.<\/p>\n\n\n\n

They simply don't want to believe that I know best when which sleeping pill is best for me. The doctor has therefore even ordered in writing - with the practice stamp and personal autograph - that the patient alone is to decide when which sleeping pill is to be administered. This also expressly applies in the event that I want to combine several different classes of medication and take more than my carers consider appropriate. How does this order go down with some carers? Three guesses...<\/p>\n\n\n\n

People just don't want to believe that I'm serious about the prescription. With other patients... Right. With others. Right now I want to sleep, and I've wanted to for a long time. It's already half past three, damn it. I don't give a shit about your opinion and how you do it with others. People just don't want to believe me, <\/p>\n\n\n\n

They just don't want to believe that I notice whether I've had a bowel movement or not. They simply take the blanket away from me, open my nappy without being asked and find out that I haven't actually had a shit yet. Of course, at a volume that guarantees that even the last of my guests has heard. My guests, whose gaze was already irritated when I presented my genitals, changed to something between incredulous, stunned and disturbed.<\/p>\n\n\n\n

And they simply wouldn't believe me - among countless other little things - that I could judge how the mask would fit correctly. You have no idea how frustrating that can be. Imagine you've been on your feet for 14 hours. The mask has been fitting for 14 hours. No squeezing, no slipping, no leakage and therefore no false alarms as a result. No watery eyes because nothing blows into your eyes and nothing presses on the bags under your eyes.<\/p>\n\n\n\n

And then a nurse comes along and says that the mask looks crooked and she can't leave it like that. My plea not to touch me and to leave the mask alone is deliberately ignored with the words that I am mistaken about the supposedly good fit of the mask. Without announcing anything and completely against my will, he or she adjusts the mask. <\/p>\n\n\n\n

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

Now I have leakage on both sides. All around, top, bottom, side. It is uncomfortable. Because of the high leakage, the ventilation is continuously triggered and pushes air into the lungs without interruption. You could call it passive hyperventilation. <\/p>\n\n\n\n

I enquire what that was all about. The mask looked uncomfortable. Whether it's her head or mine, I want to know. But... I interrupt for a cynical comment. \u201eIt was wonderful all day until you fiddled with it uninvited and ruined everything again.\u201c. Although it's hard to put it more harshly without being rude, this changes... nothing. <\/p>\n\n\n\n

It's the same every time. If you ask me, there are simply too many carers who act out their neurotic obsessive-compulsive disorder on patients like me. Even better suited are coma patients. They can't even complain like I do on a regular basis. Let's face it, what am I supposed to do? Bear with it and be lenient. Because my carers are - good-hearted - people too. It has to come out somewhere. And who else can do that but me? The most striking stereotypical pattern is probably that their partners have already left. Who else is there but me, who can neither run away nor have another carer ready in a hurry? Yes, I know, I have enough problems of my own.<\/p>\n\n\n\n

But do I have them at all? Isn't improving the care situation here the only goal that has been driving me for months?<\/p>\n\n\n\n

Or do I perhaps subconsciously like to put myself in situations in which I run a massive risk of succumbing to Stockholm syndrome? Because this role suits me? I feel quite comfortable there, secretly?<\/p>\n\n\n\n

Is this possibly an escape to the side after a goal is clearly visible straight ahead? And I don't like living without a short-term goal that I pursue every day. Apart from taking care of myself, there's very little bothering me at the moment. My family is doing well, as are my friends. My relationship is a bit rocky at times, but we've somehow managed everything so far. I have a permanent job as a consulting manager that cannot be cancelled. Today, I earn more than 90% with a severe disability... you don't talk about money. You have money. Wink smiley.<\/p>\n\n\n\n

On the other hand, I have never had a problem defining new goals. Isn't that what it's all about? After all, the core of what makes a human being is the will and the continuous striving for improvement.<\/p>\n\n\n\n

Something will turn up. Something always turns up.<\/p>\n\n\n\n

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

Man m\u00f6chte mir einfach nicht glauben, wenn ich sage, dass ich jetzt gerade keinen Hunger und keinen Appetit habe und deshalb keine weitere Trinknahrung w\u00fcnsche. Man m\u00f6chte mir einfach nicht glauben, wenn ich behaupte, dass mir 1,5 Liter feinstes M\u00fcnchner Leitungswasser \u00fcber die PEG bis 16 Uhr reichen. Ich habe keinen Bock drauf, zu ertrinken. Man m\u00f6chte mir einfach nicht glauben, dass es mir \u00fcberhaupt nicht taugt, vor dem Schlafen noch eine 400 kcal Sondenkost zu nehmen. Es gibt mir einfach nichts, wenn Magen und Darm die ganze Nacht besch\u00e4ftigt sind. Man m\u00f6chte mir einfach nicht glauben, dass ich am…<\/p>","protected":false},"author":1,"featured_media":7566,"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":[38,35,36,308,167,248,163,304,297,164,307,306,59,37,305],"class_list":["post-6830","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-posts","tag-als","tag-amyotrophelateralsklerose","tag-amyotrophiclateralsclerosis","tag-ausnutzeneinermachtposition","tag-ausserklinischeintensivpflege","tag-bevormundung","tag-dasistals","tag-explicitcontent","tag-freepremium","tag-heimbeatmung","tag-missbrauch","tag-missbrauchinderpflege","tag-pflegefehler","tag-seltenekrankheiten","tag-uebergriffigkeit"],"acf":[],"modified_by":"Ruppelt Patrick","wps_subtitle":"","_links":{"self":[{"href":"https:\/\/paddys.de\/en\/wp-json\/wp\/v2\/posts\/6830","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=6830"}],"version-history":[{"count":10,"href":"https:\/\/paddys.de\/en\/wp-json\/wp\/v2\/posts\/6830\/revisions"}],"predecessor-version":[{"id":6868,"href":"https:\/\/paddys.de\/en\/wp-json\/wp\/v2\/posts\/6830\/revisions\/6868"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/paddys.de\/en\/wp-json\/wp\/v2\/media\/7566"}],"wp:attachment":[{"href":"https:\/\/paddys.de\/en\/wp-json\/wp\/v2\/media?parent=6830"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/paddys.de\/en\/wp-json\/wp\/v2\/categories?post=6830"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/paddys.de\/en\/wp-json\/wp\/v2\/tags?post=6830"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}