Iindlela ezi-7 endiziqhelanise nesifo esinganyangekiyo kwaye ndaqhubeka ngobomi bam

Umxholo

• 1. Khange, ngokwenene - kodwa kulungile
• 2. Ndangena kwinkqubo engaguquguqukiyo
• 3. Ndifumene utshintsho kwindlela yokuphila endikwaziyo ukuyenza
• 4. Ndadibana noluntu lwam
• 5. Ndabuya umva kumaqela e-intanethi xa ndifuna njalo
• 6. Ndibeka imida kunye nabathandekayo bam
• 7. Ndacela uncedo (kwaye ndamkela!)

Ukuqala kwam ukufunyaniswa, ndandikwindawo emnyama. Ndayazi ukuba yayingeyondlela yokuhlala apho.

Xa ndafunyaniswa ndine-hypermobile Ehlers-Danlos syndrome (hEDS) kwi-2018, umnyango wobomi bam bakudala wavalwa. Nangona ndazalwa ndine-EDS, andizange ndikhubazeke ngokwenyani ngeempawu de kube ndikhona i-30, njengoko kuqhelekile kwizicwili ezinxibelelanayo, kwi-autoimmune nakwezinye izifo ezinganyangekiyo.

Ngamanye amazwi? Ngenye imini "uqhelekile" kwaye ngequbuliso, uyagula.

Ndichithe ixesha elininzi le-2018 kwindawo emnyama ngokweemvakalelo, ndicubungula ubomi be-misdiagnosis kwaye ndenza lusizi ngamanye amaphupha omsebenzi kunye nobomi endinyanzelwe ukuba ndiwuyeke. Ndidandathekile kwaye ndikwintlungu engapheliyo, ndafuna intuthuzelo kunye nesikhokelo sokuphila ubomi obunganyangekiyo.

Ngelishwa, uninzi lwezinto endizifumene kumaqela e-EDS akwi-intanethi nakwiiforum zazidimaza. Kwakubonakala ngathi wonke umntu imizimba kunye nobomi babusifa kanye njengam.

Ndifuna incwadi yesikhokelo yokundifundisa indlela yokuqhubeka nobomi bam. Kwaye ngelixa ndingazange ndiyifumane incwadi yesikhokelo, ndadibanisa kancinci iitoni zeengcebiso kunye nezicwangciso ezandisebenzela.

Kwaye ngoku, nangona ubomi bam bohlukile kunangaphambili, babuyanelisa kwakhona, butyebile, kwaye buyasebenza. Oko kukodwa ayisosivakalisi endakhe ndacinga ukuba ndingaphinda ndibhale.

Ngoko ke, ubuza njani, ukuba ndiye ndaziqhelanisa nesifo esinganyangekiyo ngaphandle kokusiyeka sithathe ubomi bam?

1. Khange, ngokwenene - kodwa kulungile

Kunjalo yathatha ubomi bam! Ndinoogqirha abaninzi kakhulu ukuba ndibabone kwaye ndivavanye ukuba ndenziwe. Ndinemibuzo emininzi, inkxalabo, uloyiko.

Zinike imvume yokulahleka kwisifo sakho- ndiyifumanisa inceda ukuseta ixesha (iinyanga ezi-3 ukuya kwezi-6). Uza kukhala kakhulu kwaye uza kuba neengxaki. Yamkela apho ukhoyo kwaye ulindele ukuba oku kuya kuba luhlengahlengiso olukhulu.

Xa sele ukulungele, ungafumana ukusebenza ngokulungisa ubomi bakho.

2. Ndangena kwinkqubo engaguquguqukiyo

Kuba bendisebenza ekhaya kwaye ndinentlungu ebuhlungu, kwakungekho nto indikhuthazayo ukuba ndishiye indlu (okanye ibhedi yam). Oku kukhokelele kuxinzelelo kunye neentlungu ezibi, zandiswa kukungabikho kwelanga kunye nabanye abantu.

Kule mihla, ndinenkqubo yesiqhelo yasekuseni, kwaye ndiyonwabela inyathelo ngalinye: Pheka isidlo sakusasa, hlamba izitya, uxukuxe amazinyo, uhlambe ubuso, uthambise ilanga, kwaye ke, nanini na ndinako, ndiyayifaka kwi-leggings ye-compression ye-hike yam (yonke isetelwe kwingoma yesandi yokungakhathali kwam corgi whining).

Isiqhelo esihleliweyo siyandikhupha ebhedini ngokukhawuleza nangokungaguquguqukiyo. Nokuba ngeentsuku ezimbi xa ndingakwaziyo ukunyuka, ndisakwazi ukwenza isidlo sakusasa kwaye ndenze indlela yam yococeko, kwaye iyandinceda ndizive ndingumntu.

Yintoni enokukunceda uvuke yonke imihla? Sisiphi isenzo esincinci okanye isiko elinokukunceda uzive ungumntu ngakumbi?

3. Ndifumene utshintsho kwindlela yokuphila endikwaziyo ukuyenza

Hayi, ukutya ii-veggies ezininzi akuyi kunyanga ukugula kwakho (uxolo!). Utshintsho kwindlela yokuphila aluyiyo imbumbulu yomlingo, kodwa zinamandla okuphucula umgangatho wobomi bakho.

Ngokugula okungapheliyo, impilo yakho kunye nomzimba wakho ubuthathaka kancinci kunoninzi. Kufuneka silumke ngakumbi kwaye sizikhethele indlela esiphatha ngayo imizimba yethu.

Unoko engqondweni, intetho-yokwenyani, ixesha lokucebisa ngaphandle kokuzonwabisa: Jonga utshintsho "lwendlela yokwenza" enokukusebenzela. Ezinye izimvo: Yeka ukutshaya, thintela iziyobisi ezinzima, fumana ukulala okuninzi, kwaye ufumane ukuzilolonga oza kunamathela kuko okungakulimazi.

Ndiyazi, yingcebiso ekruqulayo nengacaphukisiyo. Usenokuziva ngathi uyathuka xa ungade uphume ebhedini. Kodwa kuyinyani: Izinto ezincinci zongezwa.

Ziya kujongeka njani iinguqu kwindlela yokuphila enokwenzeka? Umzekelo, ukuba uchitha ixesha elininzi ebhedini, phanda ezinye iindlela zokuzilolonga ezinokwenziwa ebhedini (bona phaya!).

Vavanya indlela yakho yokuphila ngovelwano kodwa ngokuchanekileyo, ubambe nasiphi na isigwebo. Yeyiphi i-tweak encinci okanye utshintsho onokuzama ngalo namhlanje olunokuphucula izinto? Zithini iinjongo zakho kule veki? Kwiveki elandelayo? Kwiinyanga ezintandathu ukusukela ngoku?

4. Ndadibana noluntu lwam

Kuye kwafuneka ndoyame kakhulu kwabanye abahlobo abane-EDS, ngakumbi xa ndiziva ndingenathemba. Amathuba okuba, unokufumana umntu omnye ubuncinci onesifo sakho ophila ubomi onqwenela ukubufumana.

Umhlobo wam uMichelle wayengumzekelo wam we-EDS. Wafunyaniswa kuselithuba phambi kwam kwaye wayegcwele ubulumko kunye novelwano kwimizabalazo yam yangoku. Ukwangumntu ombi osebenza ngokusisigxina, wenza ubugcisa obuhle, kwaye unobomi obusebenzayo ekuhlaleni.

Undinike ithemba ebendilifuna kakhulu. Sebenzisa amaqela enkxaso kwi-Intanethi kunye namajelo eendaba ezentlalo hayi ingcebiso kuphela, kodwa ukufumana abahlobo kunye nokwakha uluntu.

5. Ndabuya umva kumaqela e-intanethi xa ndifuna njalo

Ewe amaqela e-Intanethi angaluncedo kakhulu! Kodwa banokuba yingozi kwaye batyumze umphefumlo.

Ubomi bam abukho konke malunga ne-EDS, nangona ngokuqinisekileyo beziva ngathi ziinyanga zokuqala ezi-6 ukuya kwezi-8 emva kokuxilongwa. Iingcinga zam zajikeleza kuyo, iintlungu ezingapheliyo zandikhumbuza ukuba ndinayo, kwaye ukubakho kwam okusondeleyo kula maqela kwakusomeleza ukomelela kwam ngamanye amaxesha.

Ngoku ngu Inxalenye yobomi bam, hayi ubomi bam bonke. Amaqela akwi-Intanethi asisixhobo esisebenzisekayo, ukuze uqiniseke, kodwa ungavumeli ukuba ibe kukulungiswa okukugcina uphila ubomi bakho.

6. Ndibeka imida kunye nabathandekayo bam

Xa umzimba wam waqala ukonakala kwaye iintlungu zam zaya zisiba mbi ngo-2016, ndaqala ukurhoxisa ebantwini nangakumbi. Ekuqaleni, kwandenza ndaziva njenge-flake kunye nomhlobo ombi - kwaye kuye kwafuneka ndifunde umahluko phakathi kokuphambuka nokuzikhathalela, okungasoloko kucacile njengokuba ucinga.

Xa impilo yam imaxongo, ndandifane ndenze izicwangciso zentlalo. Xa ndenzile, ndibalumkisile kungafuneka ndicime umzuzu wokugqibela kuba iintlungu zam bezingalindelwanga. Ukuba bebengapholi naloo nto, akukho ngxaki, andizange nje ndibeke kuqala ezo ubudlelwane ebomini bam.

Ndifundile ukuba kulungile ukwazisa abahlobo ukuba bangalindela ntoni kum, kwaye ndibeke phambili impilo yam kuqala. Ibhonasi: Ikwenza kucace ngakumbi ukuba ngoobani abahlobo bakho bokwenene.

7. Ndacela uncedo (kwaye ndamkela!)

Oku kubonakala ngathi kulula, kodwa xa usenza, kunokuba nzima kakhulu.

Kodwa mamela: Ukuba umntu uthembisa ukunceda, kholelwa ukuba into ayithenjisiweyo yinyani, kwaye yamkele ukuba uyayidinga.

Ndazilimaza kaninzi kunyaka ophelileyo kuba ndandineentloni zokucela umyeni wam ukuba aphakamise enye into ukwenzela mna. Oko bekusisidenge: Uyomelela, andinjalo. Kwafuneka ndiyeke ukuzingca kwam kwaye ndizikhumbuze ukuba abantu abandikhathaleleyo bafuna ukundixhasa.

Ngelixa isigulo esinganyangekiyo sinokuba luxanduva, nceda ukhumbule ukuba wena-ungumntu onexabiso kwaye unexabiso- ngokuqinisekileyo akunjalo. Ke, cela uncedo xa ulufuna, kwaye ulwamkele xa ulunikwa.

Unayo le.

U-Ash Fisher ngumbhali kunye nomntu ohlekisayo ophila ne-hypermobile Ehlers-Danlos syndrome. Xa engenalo usuku lokuxhamla-usana-lwenyamakazi, uhambahamba kunye ne-corgi yakhe, iVincent. Uhlala e-Oakland. Funda ngakumbi ngaye kwiwebhusayithi yakhe.