{"id":12100,"date":"2026-05-09T18:55:45","date_gmt":"2026-05-09T16:55:45","guid":{"rendered":"https:\/\/www.czuns.org\/?p=12100"},"modified":"2026-05-09T18:55:45","modified_gmt":"2026-05-09T16:55:45","slug":"jelena-acanski-mesec-maj-je-mesec-podizanja-svesti-za-dve-od-tri-dijagnoze-koje-imam","status":"publish","type":"post","link":"https:\/\/www.czuns.org\/en\/jelena-acanski-mesec-maj-je-mesec-podizanja-svesti-za-dve-od-tri-dijagnoze-koje-imam\/","title":{"rendered":"Jelena A\u010danski: Mesec maj je mesec podizanja svesti za dve od tri dijagnoze koje imam&#8230;"},"content":{"rendered":"<p class=\"qtranxs-available-languages-message qtranxs-available-languages-message-en\">Sorry, this entry is only available in <a href=\"https:\/\/www.czuns.org\/rs\/wp-json\/wp\/v2\/posts\/12100\" class=\"qtranxs-available-language-link qtranxs-available-language-link-rs\" title=\"B\/CG\/H\/S\">B\/CG\/H\/S<\/a>. For the sake of viewer convenience, the content is shown below in the alternative language. You may click the link to switch the active language.<\/p><p><\/p>\n<div class=\"xdj266r x14z9mp xat24cr x1lziwak x1vvkbs x126k92a\">\n<div dir=\"auto\">Mesec maj je mesec podizanja svesti za dve od tri dijagnoze koje imam i koje su u velikoj meri promenile moj \u017eivot. Sre\u0107a moja pa u ovoj blesavoj glavi \u017eive optimizam, sre\u0107a i ljubav, da je druga\u010dije bilo bi mnogo, mnogo te\u017ee.<\/div>\n<\/div>\n<div class=\"x14z9mp xat24cr x1lziwak x1vvkbs xtlvy1s x126k92a\">\n<div dir=\"auto\">Iskreno, mo\u017eda ti dani i meseci kada se di\u017ee svest o ovim ili drugum bolestima i stanjima imaju ve\u0107i smisao u razvijenim dr\u017eavama, ali kod nas, gde je nivo svesti u vezi s ovom i srodnim temama veoma nizak, da li zbog gole borbe za \u017eivot i\/ili nefunkcionalnog obrazovanja i ekspanzije nadrilekarstva, moj do\u017eivljaj je da je obele\u017eavanje beskorisno.<\/div>\n<\/div>\n<div class=\"x14z9mp xat24cr x1lziwak x1vvkbs xtlvy1s x126k92a\">\n<div dir=\"auto\">Hajde prvo da pomenem sekundarnu dijagnozu, ipak je ona prva prepoznata. Mijalgi\u010dki encefalomijelitis, zvu\u010di komplikovano. I jeste, veoma. Oboleli od ME\/SHU u proseku imaju ni\u017ei kvalitet \u017eivota u odnosu na obolele od raka, diabetesa, lupusa, mo\u017edanog udara, sr\u010danih oboljenja i hroni\u010dne bubre\u017ene insuficijencije. EQ-5D-3L skala se koristi za merenje kvaliteta \u017eivota ljudi, i kre\u0107e se u rasponu vrednost od -0.624 (najgori) do 1 (najbolji). Na ovoj skali vrednost za ME\/SHU je -0.29, \u0161to je pribli\u017eno 15 puta gore od obolelih raka i dva puta gore od mo\u017edanog udara.<\/div>\n<\/div>\n<div class=\"x14z9mp xat24cr x1lziwak x1vvkbs xtlvy1s x126k92a\">\n<div dir=\"auto\">Ali se neko setio da mu da drugo ime &#8211; Sindrom hroni\u010dnog umora. \u010cak ni tu tre\u0107u re\u010d nisu dobro preveli, opet je ra\u0111eno ofrlje, treba zamora. Kao \u0161to re\u010de moja saputnica, to je kao da dijabetesu date naziv Sindrom suvih usta. I tu kre\u0107e problem jer lekari ni okolina ne shvataju stanje ozbiljno, neki ga i ismevaju naivno ga me\u0161aju\u0107i sa hroni\u010dnim umorom. I onda kre\u0107u saveti u rangu kada bi osobi oboleloj od dijabetesa rekli: &#8220;Popij vodu da ti ne budu suva usta i bi\u0107e\u0161 ok&#8221;. A ti se iznutra raspada\u0161 u kopni\u0161.<\/div>\n<\/div>\n<div class=\"x14z9mp xat24cr x1lziwak x1vvkbs xtlvy1s x126k92a\">\n<div dir=\"auto\">Kada bi mi sada neko rekao za jogu, pozitivne misli, sirovu hranu i \u0161ta god je me\u0111u na\u0161im \u017eivljem popularno da le\u010di sve bolesti, rekla bih mu da nabije to tamo gde sunce ne sija. Bez ustezanja, bez obzira na godine, vaspitanje, obrazovanje. Da izvinu i mama i tata i svi oko mene koji su uticali na moje vaspitanje sve do Majka Mare. Razumeli bi, ma dali bi mi neku psovku, onako vojvo\u0111anski finu a konkretnu.<\/div>\n<\/div>\n<div class=\"x14z9mp xat24cr x1lziwak x1vvkbs xtlvy1s x126k92a\">\n<div dir=\"auto\">Rekla sam ja mnogima za dijagnozu, ali ono, kao da nisam. Ili jo\u0161 gore sa odsmehom ka\u017eu pa i ja to imam. Ja se ne nasmejem, odstranim ih lakim rezom iz \u017eivota. Ne smeta ovoj veseloj glavi. Srcu ponekad zasmeta.<\/div>\n<\/div>\n<div class=\"x14z9mp xat24cr x1lziwak x1vvkbs xtlvy1s x126k92a\">\n<div dir=\"auto\">Onda razmi\u0161ljam, da li treba da postavljam slike kako sam lo\u0161e, kako \u010desto ne mogu da hodam, ustanem iz kreveta, kada ponekad ne mogu da pri\u010dam&#8230; Da li bih tada osvestila okolinu? Ne, tada bi me poslali u manastir Tumane.<\/div>\n<\/div>\n<div class=\"x14z9mp xat24cr x1lziwak x1vvkbs xtlvy1s x126k92a\">\n<div dir=\"auto\">Najve\u0107i problem kod tih, ajde nazva\u0107u ih saveta, je \u0161to po njima ja imam re\u0161enje da ozdravim, ali ne\u0107u. Ako probam sirovu hranu i ne pomogne sigurno sam ne\u0161to oma\u0161ila. Ako uzmem biljne ekstrakte koje neki prepisuju i ne pomognu mi, opet ka\u017eu sigurno sam neki propust napravila. Ako mi Tumane ne pomogne, to je verovatno jer se dru\u017eim sa, kako ka\u017eu, pederima. I tako, uvek je do mene.<\/div>\n<\/div>\n<div class=\"x14z9mp xat24cr x1lziwak x1vvkbs xtlvy1s x126k92a\">\n<div dir=\"auto\">Jo\u0161 jedna u\u017easna stvar je \u0161to su mi se sva vrata kod lekara zatvorila nakon ove dijagnoze. Nema veze \u0161to postoji na stotine recenziranih nau\u010dnih radova o ozbiljnosti ove dijagnoze, biomarkerima, snimcima neuroinflamacija u mozgu.<\/div>\n<\/div>\n<div class=\"x14z9mp xat24cr x1lziwak x1vvkbs xtlvy1s x126k92a\">\n<div dir=\"auto\">Razmi\u0161ljam kako je mogu\u0107e da i pored toliko godina obrazovanja ve\u0107ina na\u0161ih lekara ne \u010dita nau\u010dne \u017eurnale ve\u0107 bira popularne magazine, gde se izme\u0111u idili\u010dih \u017eivota glumaca pi\u0161e kako pobediti hroni\u010dni umor (opet pome\u0161ana dijagnoza) jogom, molitvom, ve\u017ebanjem, i sli\u010dnim influenserskim #$&amp;@*\/.<\/div>\n<\/div>\n<div class=\"x14z9mp xat24cr x1lziwak x1vvkbs xtlvy1s x126k92a\">\n<div dir=\"auto\">A onda se setim da sam 17 godina \u010dekala da dobijem primarnu dijagnozu, i da nije bilo moje inicijative, \u010dekala bih jo\u0161. A bila sam kod ohoho specijalista. I da re\u010d &#8220;bila&#8221; je dobra re\u010d, jer nije tu bilo saradnje. Oni su se pona\u0161ali kao fikusi koje ja poku\u0161avam da zalijem \u010dinjenicama iz nau\u010dnih radova ali i iskustvenim, a oni se opiru, pokrili zemlju popularnim magazinima i sujetom, ne mo\u017ee voda da dopre do korena.<\/div>\n<\/div>\n<div class=\"x14z9mp xat24cr x1lziwak x1vvkbs xtlvy1s x126k92a\">\n<div dir=\"auto\">Ko \u0107e sve ovo \u010ditati, dugo je.<\/div>\n<div dir=\"auto\">Mo\u017eda \u0107e se nastaviti.<\/div>\n<div dir=\"auto\">Ima tu pri\u010de za primarnu dijagnozu,<\/div>\n<div dir=\"auto\">Diskriminaciju,<\/div>\n<div dir=\"auto\">Alergiju na abilizam,<\/div>\n<div dir=\"auto\">Borbu sa sistemom.<\/div>\n<\/div>\n<div class=\"x14z9mp xat24cr x1lziwak x1vvkbs xtlvy1s x126k92a\">\n<div dir=\"auto\">Razmi\u0161ljala sam da snimim video i ka\u017eem ovo naglas, jer verujem da mnoge mrzi da sve ovo \u010ditaju. Da se danas snimim, zbog napora koji bi ta aktivnost izazvala mom organizmu, par dana bih provela izolovana u mra\u010dnoj i tihoj sobi, bez mogu\u0107nosti da pri\u010dam, sedim, jedem. Mogla bih da spavam sa ma\u010dkama i divim im se kako uprkos svemu ima neko ko mo\u017ee du\u017ee da spava od mene.<\/div>\n<\/div>\n<div class=\"x14z9mp xat24cr x1lziwak x1vvkbs xtlvy1s x126k92a\"><\/div>\n<div class=\"x14z9mp xat24cr x1lziwak x1vvkbs xtlvy1s x126k92a\">\n<div dir=\"auto\"><\/div>\n<\/div>\n<p><\/p>","protected":false},"excerpt":{"rendered":"<p>Sorry, this entry is only available in B\/CG\/H\/S. For the sake of viewer convenience, the content is shown below in the alternative language. You may click the link to switch the active language. Mesec maj je mesec podizanja svesti za dve od tri dijagnoze koje imam i koje su u&#8230; <a class=\"continue-reading-link\" href=\"https:\/\/www.czuns.org\/en\/jelena-acanski-mesec-maj-je-mesec-podizanja-svesti-za-dve-od-tri-dijagnoze-koje-imam\/\">Ceo \u010dlanak<\/a><\/p>\n","protected":false},"author":3,"featured_media":12102,"comment_status":"open","ping_status":"closed","sticky":true,"template":"","format":"standard","meta":{"_eb_attr":"","_crdt_document":"","footnotes":"","_links_to":"","_links_to_target":""},"categories":[116],"tags":[],"class_list":["post-12100","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-edukativni-kutak"],"yoast_head":"\n<title><\/title>\n<meta name=\"description\" content=\"\u201eCentar \u2018\u017diveti uspravno\u2019 Novi Sad pru\u017ea personalnu asistenciju, peer podr\u0161ku i promovi\u0161e samostalan \u017eivot i ljudska prava.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, 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