Me pēhea te noho me te mamae o te AS (Ankylosing Spondylitis)

He uaua ki te whakaahua i te kare ā-roto o te tātaritanga kua pāngia koe e te mate mamae, e morearea ana ki te ora pērā i te Ankylosing Spondylitis (AS) i te wā tino pai o te oranga, i a koe e tamariki ana, e ki ana i ngā moemoeā, i ngā tumanako, me ngā mahere. I tētahi taha, kei te ngana koe ki te tīmata anō i tō oranga, ā, i tētahi atu taha, me aro atu koe ki tēnei wero. He tino taumaha tēnei kawenga. Heoi, kei reira ētahi o tātou kua kitea he huarahi hei noho angitu me tēnei mate, hei whakaae hoki ki ō rātou oranga hou. I tēnei rā, e kōrero ana tātou mō ētahi tāngata e rua.

'I tino mataku ahau' – te kōrero a Ivan

Kua pāngia a Ivan e ngā uauatanga hikoi mai anō i tōna tamarikitanga. I ētahi wā me whakamahi ia i ngā tokotoko me te tango i ngā rongoā whakamamae hei oranga mōna i te rā. I tīmata anō hoki ia ki te whakaaroaro i te wā taitamariki hei whakatau i tēnei mamae.

I te 21 o ōna tau, i a ia e ako ana mō te whakamātautau nēhi, ka kite a Ivan he rite tonu ngā tohu kua roa nei e pā ana ki a ia ki tētahi āhua kua whakaahuatia i roto i tētahi pukapuka ako mō te whakamātautau. Me taua whakapae, ka haere ia ki te kite i tētahi tākuta mate rumatiki, he tākuta e tohunga ana ki ngā raruraru hononga me te tuaiwi. Whai muri i ngā whakamātautau, i kitea he Ankylosing Spondylitis (AS) tōna mate.

Ko te mataku nui i puta ake ki tōna hinengaro i te rongonga i tēnei ko te mahi i whiriwhiria e ia.

"I taku whiwhinga mahi hei nēhi i te Wāhanga Maimoatanga Ohotata (ETU), i tino mataku ahau," te kī a Ivan. "I mataku ahau mēnā ka pā mai he mate urutā, kāore e taea e au te mahi. I kite ahau mēnā kei te hiahia ahau ki te aukati i te moemoeā kino o te hauātanga i roto i aku tau 20, me tiaki e au tōku hauora i ngā huarahi katoa e taea ana."

Nō reira, ka tīmata ia ki te kite i tētahi tohunga hinengaro mamae, ā, nāna i whakaako i a ia ngā huarahi hei whakahaere i te mamae me te kore rongoā. I whakamātau anō hoki ia i tētahi rongoā e kīia nei ko te Whakaae me te Whakaū (ACT) . He kupu ngāwari, ka āwhina tēnei rongoā i a tātou ki te mutu te whawhai ki ō tātou whakaaro me ō tātou kare ā-roto, engari me whakaae ki aua whakaaro.

"He torutoru noa iho ngā wā whakaora i tae atu ahau. Engari i āwhina i ahau ki te wikitoria i te neke atu i te tekau tau o te mamae hinengaro me te pouri," te kī a Ivan. "I whiriwhiria e au te whakaae ki tēnei āhuatanga. E mihi ana ahau mō te whai wāhi ki te wikitoria i tēnei wero me te ora i te oranga harikoa."

He mea nui anō hoki te pukapuka a Viktor Frankl 'Man's Search for Meaning' hei whakahihiko i a ia ki te whakawhanake i tēnei whakaaro. E kōrero ana te pukapuka mō tōna wā i noho hei herehere i roto i te puni kukū Nazi. E whakaahua ana i tana noho rangatira i taua wā uaua, me tana kitenga i te tikanga o te ao.

Kua tekau mā whā marama te māmā haere o te āhua o Ivan.Ko te kai tika, ngā rongoā kua tohua, me te whakakori tinana (e mahi yoga ana ia, e hiki taumaha ana, ā, e 75 meneti pea te iti rawa o te cardio i te wiki) he āwhina nui katoa ēnei i tōna oranga.

"He tino harikoa ahau ki te whai wāhi ki te mahi whai hua me te angitu hei nēhi. E mihi ana hoki ahau ki a AS, i tētahi ara. Nā te mea kua akiaki i ahau ki te whakaaro nui ki te hauora hinengaro me te hauora tinana i te wā taitamariki."

"Kei te mau tonu te mamae me te kōpiko o ōku waewae, engari e tino harikoa ana ahau ki te ora i tōku ao i tēnei rā, kua matara atu i ngā mate kino i pā mai ki ahau mō ngā tau 10," tana kī. Kei te whakarite hoki ia ki te whakatutuki i tētahi o āna moemoeā nui: te tango i tētahi tau, i ētahi tau rānei hei okioki mai i te mahi nēhi me te eke pahikara puta noa i ngā whenua.

'I mahara ahau nōku katoa te he' – te kōrero a Tristan

I te tau 2013, he tauira mātau a Tristan e whai ana i te tohu matū. Engari i te puna o taua tau, ka tīmata ia ki te rongo i te ngenge kore e taea te whakamārama. Kāore i taea e ia te ara ake i te ata, ā, ka tīmata ia ki te ngaro i ngā mahi kura.

"I mahara ahau kāore au i te whai i ngā ture. I mahara ahau nōku katoa te he," tana kī.

Nō muri mai ka mōhio a Tristan he mate tōna e kiia nei ko te non-radiography axial spondyloarthritis (nr-AxSpA), he momo AS. He māmā noa iho, ko te AS me te nr-AxSpA he mumura o te tuaiwi. I roto i te nr-AxSpA, kāore e kitea te kino o te tuaiwi i runga i ngā hihi-X nā te mea kei ngā wāhanga tōmua o te mate. I te haere whakamua o te mate, ka taea e ngā tuaiwi o te tuaiwi te whakakotahi tetahi ki tetahi. I ētahi wā, ka pā tēnei ki ētahi atu okana, pērā i ngā kanohi.

"Ko te raruraru, ina piki ake te mumura i roto i tōku tinana, ka rite ki te heke o te mahi a tōku roro. He rite ki te 'kohu roro,'" tana whakamārama.

"I a au e ako ana i te matū, kāore i taea e au te mahi i ngā mahi taiwhanga. Me tū roa, me ata pupuri hoki i ngā karāhe, engari i kitea e au he uaua."

I te mutunga, me whakatau ia i tētahi whakatau tino uaua - kia mutu tana kura.

"He tangata tino kaingākau ahau, ā, i moemoeā ahau ki te mahi i roto i te ao matū. He tino uaua ki te whakamanawanui i te ngaromanga o ēnā mea katoa," tana kī.

Engari kāore a Tristan i mutu i reira. I whakatau ia ki te whakatuwhera i tētahi atu tatau. Ahakoa kāore ia i te kaitākaro, kua noho te korikori tinana hei wāhanga nui o tōna ao. I tīmata ia ki te totoro i ōna hope me tōna tuara, me te hiki i ngā taumaha taurite. Engari ko te whetu tūturu o tana kaupapa ko tētahi taputapu e kiia nei ko te pereti wiri . Mā tēnei taputapu ka whakawhāiti, ka whakangāwari hoki ngā uaua i ētahi wā i ia hēkona. E kiia ana ka whakanui ake i te kaha, te ngāwari, me te whakaiti i te mamae. Ka whakamahia e Tristan mō te 10 meneti i ia ata.

"Ka tino whakangawari aua wiri i te pakari o tōku tinana. I ētahi wā ka tino raru ahau ki ōku hononga, engari i muri i te mahi i tēnei, ka rongo ahau i te whakamarie tonu."

I muri i tōna oranga ake, kua tae ki te wā ki te kimi mahi e rite ana ki tōna ao hou. I ako a Tristan i te hōtaka rorohiko. I ēnei rā, he kaihōtaka rorohiko tana mahi.

Kei te mahi a Tristan ināianei i raro i tētahi rangatira e mārama ana ki tōna āhua me ngā wero e pā mai ana.

"He uaua tonu ki ahau te mahi mai i te 9 i te ata ki te 5 i te ahiahi pērā i te katoa. Ko te pukumahi o te ata te mea tino uaua. Engari he waimarie ahau, nā te mea e mārama ana taku rangatira ki ahau, ā, e āwhina ana hoki i ahau."

"He uaua ki te whakatau i te korenga o te oranga e hiahiatia ana e koe," tana kī. "I mua he tangata tino kaha ahau ki te whakatutuki i ngā mea katoa, he tangata 'momo-A'. Me whakaae ahau kāore au i te tere pērā i mua, ā, kāore au e hiahia ki te mahi i ngā mea tino nui kia harikoa ai."

"Ka taea e au te hoki ki te kāinga inaianei, ka pārekareka ki tētahi ahiahi marino, me te hikoi poto i te pāka. He tino uaua ki te tae ki tēnei wāhi, engari kua tino rerekē te āhua o taku tirohanga ki te ao."

E whakaatu ana ēnei kōrero e rua i te uaua o te noho tahi me tētahi mate pūmau pēnei i te AS. Heoi, me ngā tohutohu hauora tika, te tautoko hinengaro, ngā huringa momo noho, me te waiaro kaha,Kei te whakaatu mai rātou ki a tātou ka taea e tātou te wikitoria i tēnei wero ngātahi. Ki te pāngia koe e tētahi āhuatanga ōrite, kaua e whakaaro ko koe anake. Kōrero ki tō tākuta, kia whiwhi ai koe i te āwhina e hiahiatia ana e koe.