He uaua pea te noho me te mate pūmau e kiia nei ko te Ankylosing Spondylitis (AS) i ētahi wā. Ko koe anake te mōhio ki te uaua o te aro atu ki te mamae, te pakari, me te ngenge. Ka taea e tēnei te whakamomori me te pouri i ētahi wā. Engari kia mahara, kāore koe e hiahia ki te haere ko koe anake i tēnei haerenga. Mā te tautoko a ō whanaunga ka māmā ake te aro atu ki tēnei wero.
He aha te hiranga o te kōrero mō tēnei?
He whakarāpopototanga noa iho, mā te kōrero ki tō whānau me ō hoa tata mō ō whakaaro me ō kare ā-roto ka āwhina i a rātou kia mārama ake ki a koe. Ko reira anake rātou ka mōhio ai me pēhea te āwhina i a koe me pēhea hoki te tautoko i a koe.
Whakaarohia kei te mura tō riri. Kāore e taea e koe te mahi i tāu mahi, te haere rānei ki waho. Ki te kore koe e kōrero mō tēnei mea, tera pea ka whakaaro te tangata kei te mangere koe, kei te ngana noa rānei koe ki te whakararuraru i a rātou. Engari ki te mea koe, "Kua kino ake taku AS i tēnei rā, he tino mamae taku tuara, koia ahau te kore e taea ai te haere mai," ka mārama rātou ki tō āhuatanga. Ka pātai atu hoki rātou mēnā kei te hiahia āwhina koe. He pai tēnei whakawhitiwhiti kōrero tuwhera mō ō whanaungatanga me tō hauora hinengaro.
Mā wai koe e kōrero? Me pēhea te tīmatanga?
He mea tino whaiaro tēnei. Ko wai ka kōrerotia e koe mō tō āhua, me te nui o ngā kōrero ka whakapuakina e koe , kei a koe anake te tikanga . Kāore koe e hiahia ki te kōrero ki te katoa mō tēnei mea. Engari he mea nui kia kōrerotia ki te hunga e tata ana ki a koe i roto i tō ao, ki te hunga e noho tahi ana koe i ia rā, i ia rā.
- Tō hoa rangatira: Ko ia te wāhanga nui rawa atu o tō koiora. He mea nui kia mōhio ia ki ō rā pai me ō rā kino.
- Whānau (mātua, tuākana, teina): Kei te hiahia tonu rātou ki te āwhina i a koe me te manaaki i a koe.
- Ngā hoa tata: Ko rātou te hunga pai hei kōrero ki a koe ina pouri koe, hei whakamārama rānei he aha e kore ai e taea e koe te haere i tētahi haerenga whakangahau.
- He kaiwhakahaere pono, he hoa mahi rānei i te mahi: I ētahi wā, he mea nui tēnei hei hanga i tētahi huringa iti ki te āhua o tāu mahi, hei tono āwhina rānei i tētahi rā uaua.
He uaua pea te tīmata kōrero mō tēnei. Tīmata mā te kī atu, "He mea nui tāku hei kōrero atu ki a koe." Whakamāramahia tō āhuatanga me te marino, me te ngāwari hoki.
Me pēhea tāu whakamārama i tō āhuatanga?
He tokomaha te hunga kāore pea i te mōhio ki te Ankylosing Spondylitis (AS). Tērā pea rātou e whakaaro he mate tuara noa iho tēnei. Nō reira, he mea nui kia whakamārama noa i tēnei mate.
Ka taea e koe te kī:
"Ehara tēnei i te mamae tuara anake. He mate rumatiki mumura mau tonu tēnei nā te raruraru o taku pūnaha ārai mate. Ko ngā hononga o taku tuaiwi te nuinga e pāngia ana. Ka roa te wā, ka pakari aua hononga, ā, ka uaua ki te piko me te huri. Koia te take i ētahi wā ka uaua ki ahau te noho i te tūranga kotahi mō te wā roa, kāore rānei e taea te hiki i ngā taumaha taumaha."
Kawea ngātahitia rātou ki te tākuta.
Ki te hiahia koe, karangatia tō hoa rangatira, tō whānau, tō hoa tata rānei kia haere tahi mai koe ki te kite i te tākuta . Mā tēnei ka whai wāhi rātou ki te whakarongo tika mai i tō tākuta mō tō āhua, me te pātai atu i ā rātou pātai. He huarahi pai tēnei hei hoatu i te māramatanga hohonu ake ki a rātou mō tō āhua.
| He aha hei kōrero māu | Me pēhea te whakamārama (tauira) |
|---|---|
| Ngā tohu | "Ehara i te mea ko te ngenge anake taku e rongo nei. He ngenge kore e taea te whakamanawanui. Ā, ka mārō hoki ahau i te ata, me te mea kua whati tōku tuara. Koia te take he uaua ki ahau te ara wawe i te ata." |
| Ngā Herenga ā-Tino | "Me eke tāua ki te tereina kaua ki te pahi? He uaua ki ahau te noho mō te wā roa. He māmā ake ki ahau i runga i te tereina nā te mea ka taea e au te tū ake." |
| Te tono āwhina | "Ka taea e koe te āwhina i ahau ki te hiki ake i ēnei mea? Kāore i te pai mō tōku tuara. He pai rawa atu mēnā ka taea e koe te āwhina." |
| Pānga ā-hinengaro | "I ētahi wā ka tino pōuri ahau i tēnei mamae. Ka pōuri ahau ina kore e taea e au te mahi i ngā mahi a te katoa. I ngā wā pēnei, he kaha nui ki ahau mēnā ka taea e koe te kōrero mai ki ahau." |
Kaua e wareware ki ngā tohu 'kāore e kitea'
Ko tētahi o ngā wero nui o te AS ko te kore o te rerekētanga e kitea ana. Ahakoa te nui o te mamae, te ngenge rānei, kāore e kitea e te kaimātakitaki o waho. Nō reira, kōrerotia marietia ēnei tohu 'kāore e kitea'.
- Ngenge: Ehara i te ngenge noa iho tēnei. He ngenge nui tēnei e meinga ai koe kia ngenge, kia hiamoe hoki i te rā katoa. Kia mahara ki te kōrero mō tēnei.
- Te pakari: Kōrerohia te pakari o ō hononga, inā koa i te ata, ā, i muri i te noho roa i te tūranga kotahi.
- Ngā Huringa Wairua: I te wā e noho ana koe me te mamae me ngā wero tonu, he mea noa te pōuri, te riri, me te pouri i ētahi wā. Kōrero ki tētahi e whakawhirinaki ana koe mō ēnei kare ā-roto.
Kōrerohia tō maimoatanga me tō whakahaere
Kōrerotia ki ō whanaunga mō āu mahi ki te whakahaere i tēnei mate. Ina mōhio rātou ki tō mahere maimoatanga, ka māmā ake ki a rātou te tautoko i a koe.
- Te Whakakorikori Tinana me te Whakaora Tinana: He rite te whakakorikori tinana ki te rongoā mō te AS. Mena he tikanga whakakorikori tinana tāu i ia rā, kōrerohia. Tērā pea ka taea e rātou te hikoi tahi me koe me te whakamahara i a koe ki te whakakorikori tinana.
- Ngā Rongoā: Kōrero mai ki a mātou mō ngā rongoā e tangohia ana e koe me te wā e tangohia ai e koe.
- Kai: Tērā pea kua tūtohutia e tō tākuta tētahi kai motuhake. Kōrerotia ki tō whānau, ā, ka taea e rātou te āwhina i a koe ki te whakarite kai e tika ana māu.
Ehara te tono āwhina i te tohu ngoikore. Ka hoatu he whai wāhitanga ki ō whanaunga kia whai wāhi atu ki tō ao, kia whakaatu i te aroha me te tautoko ki a koe.
Karere Tangohia ki te Kāinga
- I a koe e noho tahi ana me te mate mau tonu o te Ankylosing Spondylitis (AS), he mea nui te kōrero ki te hunga e tata ana ki a koe hei puna kaha mō te hinengaro me te tinana.
- Ko wai tāu e kōrero ai, me tāu e kōrero ai, nāu ake te whakatau. Kōrerotia tuatahitia ki te hunga e tino whakawhirinaki ana koe, me te hunga hoki e tata ana ki a koe.
- Kia māmā, kia pono hoki te kōrero. Whakamāramahia he aha te AS me tōna pānga ki tō oranga o ia rā.
- Kia mahara ki te whakahua i ngā tohu pēnei i te mamae, te pakari, inā koa te ngenge kāore e kitea.
- Kaua e wehi ki te tono āwhina. Mā tēnei ka kaha ake ō whanaungatanga.
- Kōrerohia tō mahere maimoatanga me tō tākuta i ia wā, i ia wā. Mēnā e tika ana, ka taea e koe te whiwhi i tō rātou māramatanga me te tautoko mā te whakauru i tētahi mema o te whānau pono ki aua kōrero.
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