Momwe mungakhalire ndi ululu wa AS (Ankylosing Spondylitis)

N'zovuta kufotokoza m'mawu momwe mumamvera mutapezeka ndi matenda opweteka komanso oopsa monga Ankylosing Spondylitis (AS) panthawi yabwino kwambiri ya moyo, mukakhala aang'ono komanso odzaza ndi maloto, ziyembekezo, ndi mapulani. Kumbali imodzi, mukuyesera kuyambanso moyo wanu, ndipo kumbali ina, muyenera kukumana ndi vuto lotere. Izi ndi zolemetsa kwambiri. Komabe, pali ena pakati pathu omwe apeza njira zokhalira bwino ndi vutoli ndikuzolowera miyoyo yawo yatsopano. Lero, tikulankhula za anthu awiri otere.

'Ndinachita mantha kwambiri' – nkhani ya Ivan

Ivan wakhala akuvutika ndi kuyenda kuyambira ali mwana. Nthawi zina ankagwiritsa ntchito ndodo zogwirira ndi kumwa mankhwala ochepetsa ululu kuti apirire tsiku lonse. Anayambanso kusinkhasinkha ali wamng'ono kuti apirire ululuwu.

Ali ndi zaka 21, pamene ankaphunzira mayeso a unamwino, Ivan anazindikira kuti zizindikiro zomwe wakhala akukumana nazo kwa nthawi yayitali zinali zofanana kwambiri ndi matenda omwe adafotokozedwa m'buku la mayeso. Ndi kukayikira kumeneko, anapita kwa dokotala wa nyamakazi, dokotala yemwe ndi katswiri wa matenda a mafupa ndi msana. Pambuyo poyesedwa, anapezeka ndi Ankylosing Spondylitis (AS).

Mantha akulu omwe adabwera m'maganizo mwake ndi nkhaniyi anali okhudza ntchito yomwe adasankha.

"Nditapeza ntchito monga namwino wogwira ntchito ku Emergency Treatment Unit (ETU), ndinachita mantha kwambiri," akutero Ivan. "Ndinkaopa kuti ngati nditayamba kudwala kwambiri, sindingathe kugwira ntchito. Ndinazindikira kuti ngati ndikufuna kuletsa vuto lokhala ndi chilema ndili ndi zaka 20 kuti lisachitike, ndiyenera kusamalira thanzi langa m'njira iliyonse yomwe ndingathe."

Kotero, anayamba kuonana ndi katswiri wa zamaganizo okhudza ululu yemwe adamuphunzitsa njira zothanirana ndi ululu popanda mankhwala. Anayesanso chithandizo chotchedwa Acceptance and Commitment Therapy (ACT) . Mwachidule, chithandizochi chimatithandiza kusiya kulimbana ndi malingaliro ndi malingaliro athu m'malo mwake kuwalandira.

"Ndinapitako kokha ku maphunziro ochepa a chithandizo chimenecho. Koma chinandithandiza kuthetsa ululu wamaganizo ndi kuvutika maganizo kwa zaka zoposa khumi," akutero Ivan. "Ndinasankha kuvomereza vutoli. Ndikuyamikira mwayi wopambana vutoli ndikukhala ndi moyo wachimwemwe."

Buku la Viktor Frankl lakuti 'Man's Search for Meaning' lamulimbikitsanso kwambiri kuti akhale ndi maganizo amenewa. Bukuli limafotokoza za nthawi yake monga mkaidi m'ndende ya Nazi. Limafotokoza momwe anakhalira ndi ulemu panthawi yovuta imeneyo komanso momwe anapezera tanthauzo la moyo.

Matenda a Ivan akhala akuchira kwa miyezi 14 tsopano.Zakudya zoyenera, mankhwala olembedwa ndi dokotala, ndi masewera olimbitsa thupi (amachita yoga, kunyamula zolemera, komanso kuchita masewera olimbitsa thupi kwa mphindi zosachepera 75 pa sabata) zonse zamuthandiza kwambiri kuti achire.

"Ndili wokondwa kwambiri kukhala ndi mwayi wogwira ntchito bwino ndikumva bwino ngati namwino. Komanso, ndikuyamikira AS, mwanjira ina. Chifukwa yandikakamiza kuti ndiziika patsogolo thanzi langa lamaganizo ndi lakuthupi ndili wamng'ono chonchi."

"Ndili ndi ululu ndi kuuma, koma ndikusangalala kwambiri kukhala ndi moyo wanga lero, wopanda matenda aakulu omwe andivutitsa kwa zaka 10," akutero. Akukonzekeranso kukwaniritsa chimodzi mwa maloto ake akuluakulu: kutenga tchuthi cha chaka chimodzi kapena ziwiri kuchokera ku unamwino ndi njinga m'maiko osiyanasiyana.

'Ndinaganiza kuti zonsezi zinali zolakwa zanga' - nkhani ya Tristan

Mu 2013, Tristan anali wophunzira wanzeru kwambiri amene anali kuphunzira digiri ya chemistry. Koma m'nyengo ya masika chaka chimenecho, anayamba kumva kutopa kwambiri. Sanathe kudzuka m'mawa, ndipo anayamba kuphonya ntchito ya kusukulu.

"Ndinkaganiza kuti ndinali wosadziletsa. Ndinkaganiza kuti zonsezo zinali zolakwa zanga," akutero.

Patapita nthawi, Tristan anazindikira kuti anali ndi vuto lotchedwa non-radiographic axial spondyloarthritis (nr-AxSpA), lomwe ndi mtundu wa AS. Mwachidule, AS ndi nr-AxSpA zonse ndi kutupa kwa msana. Mu nr-AxSpA, kuwonongeka kwa msana sikuonekera pa X-ray chifukwa cha magawo oyambirira a matendawa. Pamene matendawa akupita patsogolo, mafupa a msana amatha kugwirizana. Nthawi zina, izi zingakhudze ziwalo zina, monga maso.

"Vuto ndilakuti, kutupa mkati mwa thupi langa kukakula, zimamveka ngati ubongo wanga ukuchepa. Zili ngati 'chifunga cha ubongo,'" akufotokoza.

"Pamene ndinkaphunzira za chemistry, sindinkatha kugwira ntchito ya labu. Zinafunika kuyimirira kwa nthawi yayitali ndikugwira magalasi mosamala, koma ndinavutika."

Pamapeto pake, anayenera kupanga chisankho chovuta kwambiri - kusiya sukulu.

"Ndinali munthu amene anali ndi chidwi chachikulu komanso maloto ogwirira ntchito mu sayansi ya chemistry. Kutaya zonse zomwe zinali zovuta kuzipirira," akutero.

Koma Tristan sanasiye pamenepo. Anaganiza zotsegula chitseko china. Ngakhale kuti sanali wothamanga, kuchita masewera olimbitsa thupi kunakhala gawo lalikulu la moyo wake. Anayamba kuchita masewera olimbitsa thupi m'chiuno ndi msana komanso kunyamula zolemera zochepa. Koma chinthu chofunika kwambiri pa masewera olimbitsa thupi ake chinali chipangizo chotchedwa vibration plate . Chipangizochi chimapangitsa minofu kugwedezeka ndikupumula kangapo pa sekondi. Akuti chimawonjezera mphamvu, kusinthasintha, komanso kuchepetsa ululu. Tristan amagwiritsa ntchito kwa mphindi 10 m'mawa uliwonse.

"Kugwedezeka kumeneko kumachotsa kuuma kwa thupi langa. Nthawi zina ndimavutika kwambiri ndi mafupa anga, koma ndikachita izi, ndimamva mpumulo nthawi yomweyo."

Atachira pang'ono, nthawi inakwana yoti apeze ntchito yogwirizana ndi moyo wake watsopano. Tristan anadziphunzitsa yekha kupanga mapulogalamu a pakompyuta. Masiku ano, amagwira ntchito ngati wopanga mapulogalamu a pakompyuta.

Tsopano Tristan akugwira ntchito pansi pa bwana amene akumvetsa vuto lake komanso mavuto omwe limabweretsa.

"Ndimavutikabe kugwira ntchito kuyambira 9 koloko m'mawa mpaka 5 koloko madzulo monga wina aliyense. Kuthamanga kwa m'mawa ndikovuta kwambiri. Koma ndili ndi mwayi, chifukwa bwana wanga amandimvetsa ndipo amandithandiza."

"N'zovuta kuthana ndi kusakhala ndi moyo womwe ukufuna," akutero. "Kale ndinali munthu wochita zinthu mopitirira muyeso, munthu wa 'mtundu wa A'. Ndayenera kuvomereza kuti sindili wachangu monga kale, komanso kuti sindiyenera kuchita zinthu zopitirira muyeso kuti ndikhale wosangalala."

"Tsopano nditha kupita kunyumba ndikusangalala ndi madzulo chete, ndikusangalala ndi kuyenda pang'ono m'paki. Zinali zovuta kwambiri kufika pamenepa, koma momwe ndimaonera moyo wasinthiratu."

Nkhani zonsezi zikutisonyeza momwe zimakhalira zovuta kukhala ndi matenda osatha monga AS. Komabe, ndi upangiri woyenera wachipatala, chithandizo chamaganizo, kusintha kwa moyo, komanso malingaliro olimba,Akutsimikizira kwa ife kuti tingathe kuthana ndi vutoli limodzi. Ngati mukuvutika ndi vuto lofananalo, musaganize kuti muli nokha. Lankhulani ndi dokotala wanu kuti mupeze thandizo lomwe mukufuna.