Imiba yeethishu: Ugqirha wam uthi andinayo i-EDS. Ngoku kuthweni?

Umxholo

• Kodwa nantsi into: eyona nto imangalisayo endiyifundileyo kukuba eyona ntlungu ifanelekileyo ayifumaneki ngugqirha.

Ndifuna iziphumo ezilungileyo kuba ndifuna iimpendulo.

Wamkelekile kwiiNgxaki zeTishu, ikholamu yengcebiso evela kumdlalo ohlekisayo u-Ash Fisher malunga nokuqina kwethishu, i-Ehlers-Danlos syndrome (i-EDS), kunye nezinye iingxaki zokugula ezingapheliyo. I-Ash ine-EDS kwaye inolawulo kakhulu; ukuba nekholamu yeengcebiso liphupha elizalisekayo. Unombuzo kuAsh? Fikelela nge-Twitter okanye kwi-Instagram @AshFisherHaha.

Imiba yeTissue,

Umhlobo wam wafumanisa ukuba une-EDS kutsha nje. Andizange ndive ngayo, kodwa xa ndiyifunda, kwakungathi ndifunda ngobomi bam! Ndihlala ndibhetyebhetye kwaye ndidiniwe kakhulu, kwaye ndinentlungu edibeneyo okoko ndikhumbula.

Ndathetha nogqirha wam wokuqala kwaye wandithumela kwi-geneticist. Emva kokulinda iinyanga ezi-2, ndade ndatyunjelwa. Kwaye wathi andinayo i-EDS. Ndiziva ndikhathazekile. Ayikuko ukuba ndifuna ukugula, kukuba ndifuna impendulo yesizathu sokuba ndigule! Nceda! Ndenza ntoni ngokulandelayo? Ndiya njani phambili?

- {textend} Kuyabonakala ukuba ayiyo Zebra

Othandekayo Kuyabonakala ukuba ayiyo Zebra,

Ndiyazi kakuhle kakhulu ukuthandaza, ukunqwenela, kwaye ndinethemba lokuba uvavanyo lonyango luza kubuya luhle. Bendihlala ndisoyika oko kundenze ndafuna i-hypochondriac.

Kodwa ke ndiye ndaqonda ukuba ndifuna iziphumo ezilungileyo kuba ndifuna iimpendulo.

Kwandithatha iminyaka engama-32 ukuba ndifumane ukuxilongwa kwe-EDS kwaye ndisenomsindo omncinci ukuba akukho ugqirha ozifumene ngokukhawuleza.

Umsebenzi wam waselebhu uhlala ubuya umbi- {textend} hayi kuba bendifakela, kodwa ngenxa yokuba umsebenzi wegazi oqhelekileyo awunakubona ukuphazamiseka kwezicubu zomzimba.

Ndiyazi ukuba ucinga ukuba i-EDS yayiyimpendulo kwaye izinto zaziza kuba lula ukusuka apha. Ndiyaxolisa ngokuba ubethe enye indlela yendlela.

Kodwa makhe ndikunike enye imbono: yile Iindaba ezimnandi. Awunayo i-EDS! Esi sesinye isifo esisusileyo, kwaye ungabhiyozela ukuba awunaso esi sifo singanyangekiyo.

Ke kuya kufuneka wenze ntoni ngokulandelayo? Ndikucebisa ukuba usete idinga nogqirha wakho.

Ngaphambi kokuba ungene, yenza uluhlu lwayo yonke into ofuna ukuyithetha. Emva koko khetha izinto ezintathu eziphezulu ezixhalabisayo kwaye uqiniseke ukuba uyazisombulula ezo.

Ukuba kukho ixesha, thetha ngayo yonke enye into. Nyaniseka kugqirha wakho malunga nokoyika, ukukhathazeka, iintlungu kunye neempawu zakho. Ngokuqinisekileyo cela ukuhanjiswa ngonyango. Jonga enye into ayicebisayo.

Kodwa nantsi into: eyona nto imangalisayo endiyifundileyo kukuba eyona ntlungu ifanelekileyo ayifumaneki ngugqirha.

Kwaye ndiyayazi ukuba suuuuucks. Kwaye ukuba kuvakala kuthotywa, ndiyaxolisa, kwaye ndicela nindinyamezele.

Xa ndafunyaniswa ndine-EDS, ngequbuliso ubomi bam baba nengqondo. Njengoko ndisebenza ukuqhubekekisa olu lwazi lutsha, ndiye ndathambekela kancinci.

Ndifunda izithuba ezivela kumaqela e-EDS Facebook mihla le. Bendisoloko ndifumana izityhilelo malunga le umhla kwimbali yam okanye lonto ukwenzakala omnye okanye lonto enye ingozi, oh nkosi yam! Yayiyi-EDS! Yonke i-EDS!

Kodwa eyona nto ayisiyiyo yonke i-EDS. Ngelixa ndinombulelo wokwazi ukuba yeyiphi eyona nto iphambili ebomini beempawu ezingaqhelekanga, i-EDS ayisiyiyo into endichaza ngayo.

Ngamanye amaxesha intamo yam ibuhlungu, hayi evela kwi-EDS, kodwa ngenxa yokuba ndihlala ndigoba ukujonga ifowuni yam - {textend} kanye njengokuba intamo yomntu wonke ibuhlungu kuba bahlala begobile ukujonga iifowuni zabo.

Ngelishwa, ngamanye amaxesha awusoze ufumane isifo. Ndiyarhana ukuba inokuba lolona loyiko lwakho lukhulu, kodwa ndive!

Ndikucela umngeni ukuba ugxile kunyango nasekuvuseleleni kunokuba ubethelele ukuba yintoni kanye kanye engalunganga. Usenokungazi. Kodwa kuninzi ongakwenza, ngokwakho, ekhaya, nabahlobo okanye iqabane.

Ugqirha wam wamathambo osisilumko undixelele ukuba u “kutheni” wentlungu akabalulekanga ngendlela "yokunyangwa.”

Unokuziva ungcono kwaye womelele nokuba awazi ukuba yintoni kanye ebangela iimpawu zakho. Kukho uncedo oluninzi phaya kwaye ndiyakholelwa ngokwenene ukuba ungaqala ukuziva ubhetele kungekudala.

Ndincoma kakhulu usetyenziso olunyangekayo, olusebenzisa iindlela ezahlukeneyo, kubandakanya unyango lokuziphatha, ukunyanga iintlungu ezingapheliyo. Ndandithandabuza kodwa ndiye ndamangaliswa yinto endiyifundileyo malunga nentlungu evela kuyo kunye nendlela endinokuyilawula ngayo ndisebenzisa ingqondo yam kuphela. Zama.

Ukunyangeka kundifundise ukuba ukucinga ngemeko yokuqonda isifo kuhlala kungancedi ngokubonisa unobangela wentlungu kwaye ukuleqa ukuxilonga kunye nezizathu akuyi kukunceda kwintlungu. Ndiyakukhuthaza ukuba uzame. Kwaye ukuba uyayithiya, zive ukhululekile ukundithumela nge-imeyile ukuba ndikrobe ngayo!

Okwangoku, gxila kwinto esiyaziyo ukuba isebenzela iintlungu ezingapheliyo: ukuzilolonga rhoqo, ukomeleza izihlunu, i-PT, ukulala kakuhle rhoqo, ukutya ukutya okumnandi kunye nokusela amanzi amaninzi.

Buyela kwiziseko: ukuhamba, ukulala, ukunyanga umzimba wakho njengento exabisekileyo kunye nokufa (enyanisweni zombini).

Ndigcine ndihlaziywa. Ndiyathemba ukuba uza kufumana isiqabu kungekudala.

Ukukhathazeka,

Uthuthu

U-Ash Fisher ngumbhali kunye nomntu ohlekisayo ophila ne-hypermobile Ehlers-Danlos syndrome. Xa engenalo usuku lokudakumba-lomntwana-wexhama, uhambahamba kunye ne-corgi yakhe, iVincent. Uhlala e-Oakland. Funda ngakumbi ngaye iwebhusayithi.