Izinkinga Zezicubu: Udokotela wami uthi anginayo i-EDS. Manje?

-Delile

• Kepha nansi into: into emangalisa kakhulu engiyifundile ukuthi ukukhululeka kobuhlungu okungcono kakhulu akutholakali ngudokotela.

Bengifuna umphumela omuhle ngoba bengifuna izimpendulo.

Uyemukelwa kwi-Tissue Issues, ikholomu yezeluleko evela kosomahlaya u-Ash Fisher mayelana nezinkinga zezicubu ezixhumene, i-Ehlers-Danlos syndrome (EDS), kanye nezinye izinkinga zesifo esingelapheki. U-Ash une-EDS futhi ungumphathi kakhulu; ukuba nekholomu yezeluleko kuyiphupho eligcwaliseka. Unombuzo ku-Ash? Finyelela nge-Twitter noma nge-Instagram @AshFisherHaha.

Izinkinga Ezithandekayo Zezicubu,

Umngani wami kutholakale ukuthi une-EDS muva nje. Ngangingakaze ngizwe ngakho, kepha lapho ngiyifunda, kwaba sengathi ngifunda ngempilo yami! Bengihlala ngiguquka kakhulu futhi ngikhathala kakhulu, futhi ngibe nobuhlungu bamalunga isikhathi eside njengoba ngikhumbula.

Ngikhulume nodokotela wami oyinhloko futhi wangidlulisela kuchwepheshe wezofuzo. Ngemuva kokulinda izinyanga ezimbili, ekugcineni ngathola ukuqokwa kwami. Futhi wathi anginayo i-EDS. Ngizizwa ngidumele. Akukona ukuthi ngifuna ukugula, ukuthi ngifuna impendulo yokuthi kungani ngigula! Usizo! Yini engiyenzayo ngokulandelayo? Ngiqhubekela kanjani phambili?

- {textend} Ngokusobala Hhayi Zebra

Othandekayo Ngokusobala Hhayi Idube,

Ngikwazi kahle kakhulu ukuthandaza, ukufisa, futhi nginethemba lokuthi ukuhlolwa kwezokwelapha kuzobuya ngiphilile. Ngangivame ukwesaba ukuthi kungenze i-hypochondriac efuna ukunakwa.

Kepha ngibe sengibona ukuthi ngifuna umphumela omuhle ngoba bengifuna izimpendulo.

Kungithathe iminyaka engama-32 ukuthola ukuxilongwa kwami ​​kwe-EDS futhi ngisathukuthele kancane ukuthi akekho udokotela osheshe wakuqonda.

Umsebenzi wami welebhu ubuya njalo ungemuhle - {textend} hhayi ngoba bengifakela, kodwa ngoba umsebenzi wegazi ojwayelekile awukwazi ukuthola ukuphazamiseka kwezicubu ezihlangene.

Ngiyazi ukuthi ubucabanga ukuthi i-EDS iyimpendulo futhi izinto bezizoba lula ukusuka lapha. Ngiyaxolisa kakhulu ngokuthi ushaye esinye isivimbamgwaqo.

Kepha ake ngikunikeze omunye umbono: lokhu izindaba ezimnandi. Awunayo i-EDS! Lokho okunye ukuxilongwa osusususile, futhi ungagubha ukuthi awunaso lesi sifo esingelapheki.

Ngakho-ke yini okufanele uyenze ngokulandelayo? Ngikisela ukuthi usethe i-aphoyintimenti nodokotela wakho wokunakekelwa okuyinhloko.

Ngaphambi kokungena, yenza uhlu lwayo yonke into ofuna ukukhuluma ngayo. Bese ukhetha ukukhathazeka kwakho okuphezulu okuthathu bese uqinisekisa ukuthi uyabhekana nakho.

Uma kunesikhathi, khuluma ngakho konke okunye. Thembeka kudokotela wakho mayelana nokwesaba kwakho, ukukhathazeka kwakho, ubuhlungu bakho, nezimpawu zakho. Impela cela ukuthunyelwa kokwelapha ngokomzimba. Bona ukuthi yini enye ayincomayo.

Kepha nansi into: into emangalisa kakhulu engiyifundile ukuthi ukukhululeka kobuhlungu okungcono kakhulu akutholakali ngudokotela.

Futhi ngiyazi ukuthi suuuuucks. Futhi uma kuzwakala kwehlisa, ngiyaxolisa, futhi ngicela ungibekezelele.

Lapho ngitholwa ukuthi ngine-EDS, ngokungazelelwe impilo yami eningi yaba nengqondo. Ngenkathi ngisebenza ukucubungula lolu lwazi olusha, ngaqala ukukhathazeka ngokweqile.

Ngifunda okuthunyelwe kusuka emaqenjini e-EDS Facebook nsuku zonke. Bengihlala ngivezwa njalo mayelana lokhu usuku emlandweni wami noma ukuthi ukulimala okukodwa noma ukuthi okunye ukulimala, awu nkosi yami! Lokho kwakungu-EDS! Konke kuyi-EDS!

Kepha into ukuthi, akuyona yonke i-EDS. Ngenkathi ngibonga ukwazi ukuthi yini okuyimpande yokuphila kwezimpawu ezingajwayelekile, i-EDS akuyona into engichazayo.

Kwesinye isikhathi intamo yami ayibuhlungu, hhayi i-EDS, kodwa ngoba ngihlala ngigoba ukubuka ifoni yami - {textend} njengokuthi intamo yabo bonke abantu ibuhlungu ngoba bahlala begobile bebheka izingcingo zabo.

Ngeshwa, kwesinye isikhathi awutholi ukuxilongwa. Ngiyasola ukuthi lokho kungaba enye yezinto ozesaba kakhulu, kodwa ngizwe!

Ngikuphonsela inselelo yokuthi ugxile ekwelashweni nasekululameni kunokubambela phansi ukuthi yini ngempela okungalungile. Ungahle ungazi. Kepha kuningi ongakwenza, uwedwa, ekhaya, nabangani noma umlingani.

Udokotela wamathambo wami ohlakaniphe kakhulu ungitshele ukuthi “kungani” kobuhlungu akubalulekile njengokuthi “buphathwa kanjani.”

Ungazizwa ungcono futhi uqine ngisho noma ungazi kahle ukuthi yini ebangela izimpawu zakho. Kukhona usizo oluningi laphaya futhi ngikholelwa ngokweqiniso ukuthi ungaqala ukuzizwa ungcono ngokushesha.

Ngincoma kakhulu uhlelo lokusebenza ukuthi luyelapheka, olusebenzisa amasu ahlukahlukene, kufaka phakathi ukwelashwa kokuziphatha kwengqondo, ukwelapha ubuhlungu obungapheli. Benginokungabaza kepha ngimangazwe yilokho engikufundile mayelana nokuthi buvela kuphi ubuhlungu nokuthi ngingabuphatha kanjani empeleni ngisebenzisa ingqondo yami kuphela. Izame.

Ukwelapha kungifundise ukuthi ukucabanga ngokuxilonga kaningi akusizi ngokukhombisa imbangela yobuhlungu nokuthi ukujaha ukuxilongwa nezizathu ngeke kusize ubuhlungu bakho. Ngiyakukhuthaza ukuthi uzame. Futhi uma uyakuzonda, zizwe ukhululekile ukungithumela i-imeyili ukuze ngikukhulume!

Okwamanje, gxila kulokho esikwaziyo okusebenzela ubuhlungu obungapheli: ukuzivocavoca umzimba njalo, ukuqinisa imisipha, i-PT, ukulala kahle njalo, ukudla ukudla okuhle, nokuphuza amanzi amaningi.

Buyela kuzisekelo: ukuhamba, ukulala, ukuphatha umzimba wakho njengokuyigugu nokufayo (empeleni kuyikho kokubili).

Ngigcine ngivuselelwa. Ngiyethemba uzothola impumuzo kungekudala.

Ukuzikhukhumeza,

Umlotha

U-Ash Fisher ungumbhali nosomahlaya ophila ne-hypermobile Ehlers-Danlos syndrome. Lapho engenalo usuku oluntengantenge-lwenyamazane, uhamba ngezinyawo no-corgi wakhe, uVincent. Uhlala e-Oakland. Funda kabanzi ngaye iwebhusayithi.