{"id":5448,"date":"2023-04-10T01:19:40","date_gmt":"2023-04-09T23:19:40","guid":{"rendered":"https:\/\/paddys.de\/?p=5448"},"modified":"2023-06-09T16:03:37","modified_gmt":"2023-06-09T14:03:37","slug":"no-pain-no-fun","status":"publish","type":"post","link":"https:\/\/paddys.de\/en\/no-pain-no-fun\/","title":{"rendered":"Don't hurt my feelings."},"content":{"rendered":"Reading time<\/span> 6<\/span> Minutes<\/span><\/span>\n

Today, for a change, I have no complaining about my care service and no whining. Quite the opposite. Today I want to tell you something from the real life of an ALS patient. Something you won't find in any textbook. Why no one writes about such things? Good question. Probably because it doesn't make any money and it is not so trivial for an ALS patient who is paralysed from the jaw down. I try very hard to write in prose and to make my texts compact and entertaining. Nevertheless, at times I spend 14, 15 or even 16 hours a day in front of my blog writing. Who else but me would see any point in that if you don't get paid for it?<\/p>\n\n\n\n

Fortunately, I enjoy the luxury of having built up enough myself in my life to permanently secure the financing of my life. So I can continue to do what I have been doing all my life. Namely, what I want to do, as I see fit, and - the very crucial point - what gives me pleasure. Writing, oh yes, I have always enjoyed that almost as much as talking all the time.<\/p>\n\n\n\n

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Today's topic: Movement, feeling, sensation of pain.<\/p>\n\n\n\n

I am always struck by how frail people think I am. When I look at photos of myself, it doesn't surprise me. It looks pretty crappy.<\/p>\n\n\n\n

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I think it is all the more important to explain exactly how I feel. Even though I have no contact with other ALS patients - I don't define myself by my illness and have no interest in joining any self-help groups - I still believe that I can speak for most similar cases here. Or rather, can write, er, written. Wink smiley.<\/p>\n\n\n\n

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First of all, it is important to know that the paralysis symptoms that occur with ALS only extend to those nerves that are responsible for motor function. In other words, I feel and sense everything, but can't move anything. That is totally abstruse. You have to take a moment and think about what that means. Then you already know a lot about ALS.<\/p>\n\n\n\n

Voluntary motor activity is basically everything that I should be able to consciously control in the musculoskeletal system via my brain. For example, lifting my feet when walking, moving my fingers when writing or blinking my eyes. Typically, it starts in just one limb and then gradually spreads to the rest of the body. Or, in so-called bulbar ALS, it would start at the head and move downwards.<\/p>\n\n\n\n

For me, it started on the toes of the right foot. This is followed by the right foot itself, the right leg. Already there, the typical appearance of ALS becomes apparent. I feel everything. Every fasciculation of the lower legs and later also of the thighs. Cramps are particularly severe because they occur every day, or several times a day, and the sensation of pain remains unchanged in ALS. <\/p>\n\n\n\n

My left leg came next, followed by my abdomen, stomach, torso, chest and neck. I am now a \u201etetra\u201c. Paralysis of all four extremities, known as tetraparesis in technical jargon.<\/p>\n\n\n\n

And then, just when you start to get your life together as a Tetra, your care provider terminates you because you don't bring as much profit as a coma patient lying in one of your shared flats with ten other patients. Can't complain. This hurdle is also overcome. And then, for me, came the neck, the lower jaw, lips and tongue. That's where I am now.<\/p>\n\n\n\n

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It looks similar with the unintentional or unconscious and uncontrollable movement. You just don't really notice it. After all, you can't control your heartbeat or breathing anyway, so you probably wouldn't notice if it wasn't working so well. At the moment when you are on the ventilator 24\/7, you probably have to have unusually good self-awareness to be able to feel a change in the breathing muscles.<\/p>\n\n\n\n

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The really exciting story, and in my opinion a very, very important element of ALS, is that sensory nerves are not affected. I can feel everything; I can feel the women at my side as well as the dog that has once again chosen the best spot. If my feet are tickled, this could possibly be considered torture in legal terms. Because, as I said, I can feel everything - including when you tickle me - but I can't physically defend myself. Isn't that right, dear Geli? Wink smiley.<\/p>\n\n\n\n

A big problem can be that I feel everything. Pay conscious attention to what you do with your hands all day long. How often you touch your face somewhere, scratch your head. Or somewhere else on your body. Another classic would be the mosquito that makes itself comfortable on your arm in the summer. I feel the mosquito, its fine legs on my own skin. And then comes the part that is almost of academic interest again. What you don't normally know, because you would have moved or struck long ago. I feel the proboscis stinging me and then from there on nothing. I think they somehow have an anaesthetic on their trunks, I read something about that. <\/p>\n\n\n\n

Let's move on to the really unpleasant things. Calf cramps. Even better, cramps of the foot muscles. Until then, I didn't even know that you could have a cramp in your foot. I was taught better. And how you can have cramps in your foot. You especially enjoy them when you are physically unable to move. Neither the cramping foot, nor the hands to do anything about it.<\/p>\n\n\n\n

And yet there are moments when pain is the only thing that saves me from worse. Unlike a paraplegic, I can really feel when I'm sore. So if I get a pressure sore, it's not because I haven't asked to be moved. In fact, the daily pain from the two \u201ebumps\u201c (bones) sticking out at the back of my hips quickly became unbearable. During the day, I would ring the bell every time I walked. It's only when I realise that my carer doesn't understand what we mean by leaving areas of skin at risk of soreness exposed that I stop begging all the time. Or if I have to wait half an hour for a WhatsApp massage myself, then I'd rather find myself with a small pressure sore right away.<\/p>\n\n\n\n

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Like this. I have already explained one more thing in another post. But unfortunately it's more topical than ever. So I'm going to give it another go. My motor skills are not working for me. For example, I can't control the abdominal muscles or any other muscles in the lumbar region. So I can't manage to tense my stomach. As a result, I can't really - let's call it that - take a shit without helping out. Every two days I take Movicol, which is mainly a softener and also a laxative. I also need something for the actual business. Either, if I \u201eurgently need to\u201c, then a syringe of Mikrolax is often enough to enema. Otherwise, Dulcolax in the form of suppositories is needed. This almost always works, but can sometimes take two hours.<\/p>\n\n\n\n

The crux of the matter, which some nurses don't seem to understand, is that I still feel everything. I need aids to be able to empty my bowels, yes. But when something comes, I feel it very well.<\/p>\n\n\n\n

There really is no reason - but absolutely no reason at all - to cover me up before my visit without being asked and to rip my nappy open before I can even say a word. The highlight is then the solemnly proud declaration of the new findings to my visitors. In other words, the statement about whether the nappy is still clean or not. In any case, I will continue to comment on this with a frustrated \u201eI know\u201c. As this has no effect, I will try it in future with <\/p>\n\n\n\n

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\u201eTell me something I don't know yet. \u201e.<\/p>\n<\/blockquote>\n\n\n\n

Maybe this will fly.<\/p>\n\n\n\n

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Of course, practically everyone knows that I wear a nappy anyway. But do you have to serve that to every one of my guests on a silver platter? Crap, damn it. I didn't mean to complain about my nursing service. But he really does provide a prime example of how it shouldn't be done on every occasion. Knowing that I'm repeating myself, my own carers, of all people, can't understand the clinical picture. <\/p>\n\n\n\n

Well, that's how it is. That's ALS.<\/p>\n\n\n\n

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To be continued...<\/a><\/div>\n<\/div>\n\n\n\n
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<\/p>","protected":false},"excerpt":{"rendered":"

Today, for a change, I'm not complaining about my care service or moaning. Quite the opposite. Today I want to tell you something about the real life of an ALS patient. Something you won't find in any textbook. Why doesn't anyone write about such things? Good question. Probably because it doesn't make any money and it's not so trivial for an ALS patient who is paralysed from the jaw down. I try very hard to write in prose and to keep my texts compact and entertaining. Nevertheless, I am sometimes 14, 15 or even 16...<\/p>","protected":false},"author":1,"featured_media":7482,"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":[38,35,36,163,297,292,37],"class_list":["post-5448","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-posts","tag-als","tag-amyotrophelateralsklerose","tag-amyotrophiclateralsclerosis","tag-dasistals","tag-freepremium","tag-premiumbeitrag","tag-seltenekrankheiten"],"acf":[],"modified_by":"Ruppelt Patrick","wps_subtitle":"","_links":{"self":[{"href":"https:\/\/paddys.de\/en\/wp-json\/wp\/v2\/posts\/5448","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=5448"}],"version-history":[{"count":37,"href":"https:\/\/paddys.de\/en\/wp-json\/wp\/v2\/posts\/5448\/revisions"}],"predecessor-version":[{"id":7484,"href":"https:\/\/paddys.de\/en\/wp-json\/wp\/v2\/posts\/5448\/revisions\/7484"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/paddys.de\/en\/wp-json\/wp\/v2\/media\/7482"}],"wp:attachment":[{"href":"https:\/\/paddys.de\/en\/wp-json\/wp\/v2\/media?parent=5448"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/paddys.de\/en\/wp-json\/wp\/v2\/categories?post=5448"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/paddys.de\/en\/wp-json\/wp\/v2\/tags?post=5448"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}