Sɔntɛnde, yu kin wek na mɔnin ɛn yu kin fil pen, yu kin stif, ɛn yu bak ɛn yu hip dɛn kin gɛt pen? Yu kin fil taya pasmak na mɔnin, ilɛksɛf yu slip na nɛt? If dɛn sayn ya nɔr jɔs bi wan ɔr tu, bɔt dɔn de mɔna yu fɔ lɔng tɛm, i fayn fɔ tek kia ɔf am smɔl. Tide wi de tɔk bɔt pɔrsin wae de liv wit dis kayn ɛkspiriɛns ɛn de sik wae de kɔz am, Ankylosing Spondylitis (AS).
Wetin rili na Ankylosing Spondylitis (AS)?
Fɔ tɔk am simpul wan, dis na wan kayn at at sik bak. Bɔt dis wan kin afɛkt yu spayna ɛn di jɔyn dɛn we gɛt fɔ du wit am mɔ . biכs fכ sכm mistek na wi bכdi in imyun sistεm, i de stat fכ atak wi כwn jכint dεm, spεshal wan di jכint dεm bitwin di vεrbra dεm na di spayna εn di jכint dεm we de kכnekt di hip bon. Dis kin mek yu gɛt inflamɛns , we min se yu kin swel, yu kin rɛd, ɛn yu kin fil pen bad bad wan.
As tɛm de go, dis inflamɛns kin mek di jɔyn dɛn stif ɔ fuz togɛda. Di wɔd "ankylosing" min "fused together." Dis na di men tin we kin mek pɔsin stif ɛn pen na mɔnin. Dis sik kin kam pan man dɛm ɛn i kin bigin we dɛn yɔŋ, bitwin 20 ɛn 40 ia.
Naw lɛ wi si aw de ɛkspiriɛns fɔ pɔrsin wae gɛt dis sik kin tan lɛk. Dis stori go ɛp yu fɔ ɔndastand dis kɔndishɔn bɛtɛ.
Fɔ stat di de wit AS na chalenj ɛvride.
Di pɔsin we de tɛl dis stori bigin fɔ gɛt dɛn sik ya we i ol lɛk twɛnti ia so. Fɔs, i bin fil lɛk se i nɔ gɛt bɛtɛ trɛnk, i bin de fil pen, ɛn i bin taya we i nɔ go ebul fɔ bia. Na afta lɛk wan ia so, dɛn bin kam fɔ no se i gɛt dis sik.
A gɛt pɔsin we rili fast, we de plan fɔ du sɔntin na mi maynd. Bɔt mi bɔdi nɔ go alaw mi. I tan lɛk Tayp A pɔsin we trɔp insay Tayp Z bɔdi.
I se ɛvri mɔnin na tranga fɔ bigin. I nɔ mata aw i slip di nɛt bifo, i kin wek wit bɔdi we de at ɛn taya pasmak. I se: “I tan lɛk se yu dɔn rɔn maratɔn ɛn sɔmbɔdi de bit yu wit stik.”
Di fɔs tin we a kin du we a wek na fɔ tek mi mɛrɛsin. Dɔn a kin drink kɔfi. Na da tɛm de nɔmɔ, if a gɛt ɛni ɛnaji we lɛf, du sɔm raytin, go na do ɛn du sɔm wok, ɔ du sɔm kuk.
"Fɔ gɛt AS tan lɛk fɔ gɛt rimot kɔntrol na yu bɔdi. Dɛn kin ɔf mi wit di fatigue bɔtin ɛnitɛm we dɛn want. Dɛn kin tɔn di pen bɔtin ɔp to maksimam volyum. Dɛn kin muv tin dɛn we a want fɔ du."
Wan plan fɔ ɔltin - aw fɔ mek layf izi
We yu de liv wit prɔblɛm lɛk dis, di wangren tin we yu go ebul fɔ du na fɔ plan ɔltin. Frɔm shop, to kuk, to soshal, to wok, to slip, yu nid fɔ gɛt plan. Dɔn bak, yu nid fɔ mek shɔ se yu put tɛm fɔ rilaks afta yu dɔn du sɔntin.
Fɔ ɛgzampul, lɛ wi tink bɔt aw fɔ kuk. I nɔ pɔsibul fɔ du ɔl dis insay wan de, wok fɔ 8 awa, kuk na nɛt, was klos, ɛn go na di stoa. So wetin i de du na fɔ pripia di vɛjitebul ɛn sos dɛn we i nid fɔ di it tu ɔ tri dez bifo tɛm. I "kuk in bulk" wan ɔ tu tɛm insay di mɔnt. Dat min se i kin kuk sɔntin lɛk chukchuk, mek sɔm rays, ɛn kip am na friza. Da we de, i kin izi fɔ mek i it di de we i de fil bad.
Ɔl dis dipen pan aw pɔsin fɔ pripia. Bifo yu du ɛnitin, yu nid fɔ plan fɔ du am. Ɛn afta dat, yu rili nid fɔ rɛst.
Wan fɛt wit slip - di chalenj fɔ 'Painsomnia'.
Na let aftanun yu kin fil fayn smɔl. Pan ɔl we yu kin wok da tɛm de, i nɔ kin izi fɔ disayd ustɛm fɔ stɔp ɛn rɛst. Dɔn bak, fɔ slip wit AS nɔ kin izi.
I kɔl dis ‘Painsomnia’ . I min se pɔsin nɔ kin ebul fɔ slip bikɔs i de fil pen. We yu bɔdi de at, fɔ fɛn di rayt say fɔ slip kin tranga. Sɔntɛnde, bikɔs ɔf strɛs ɔr yu bɔdi nɔr kin fayn, yu kin gɛt fɔ wek te do klin.
Sɔm nɛt dɛn a kin gɛt ‘brɛkthrough pain’ bak . "I tan laik shap pen we de pier fo di bon. Ivun as a don get dis sik fo 18 yiez, i stil de sapraiz mi wen i kom, bikos i so bad."
So, lɛk ɔl ɔda tin, i gɛt plan fɔ slip.
| Du | Tɔk bɔt |
|---|---|
| Fɔ rɛdi fɔ go slip | Lɛk wan awa bifo yu go slip, mek wan kɔp ti we nɔ gɛt kafin ɛn drink am. Di smel we i de smɛl go ɔlsay na di rum, ɛn dis go mek yu bɔdi rɛdi fɔ slip. |
| Fɔ mek pɔsin nɔ fil pen | Neks, a kin luk usay di pen de mɔ na mi bɔdi ɛn put krim we de mek a nɔ fil pen ɔ wan pad fɔ ɔt pan dɛn say dɛn de. Sɔntɛnde, a kin du sɔm ɛksashɔn dɛn fɔ strɛch. |
| Fɔ mek yusɛf fil fayn | Dɔn a kin wɛr fayn klos, rap misɛf wit bɔku bɔku blankit dɛn, ɛn go slip. |
| If yu wek na nɛt | If yu wek midul nɛt, yu kin strɛch smɔl mɔ ɔ put sɔm krim ɛn tray fɔ slip bak. If yu nɔ slip fayn, apat frɔm we yu taya di nɛks de, yu go gɛt mɔ pen bak pas aw yu kin fil. |
Yu nɔ de yu wan - kɔmyuniti sɔpɔt
Wae yu de liv wit wan sik wae nɔr de mɛn lɛk AS, na big trɛnk fɔ no se nɔr de yu wan. Dis tɛm ya, strɔng kɔmyuniti dɛn fɔ pipul dɛn we de sɔfa dɔn fɔm na di intanɛt. Yu nɔ ivin nid fɔ kɔmɔt na yu os fɔ go fɛn dɛn.
De pɔrsin wae de tɛl dis stori kin kɔnɛkt ɔltɛm wit dɔktɔ dɛm, pipul dɛm wae de du risach, ɛn pipul dɛm wae gɛt dis sem sik na di intanɛt. I biliv se i de mek big difrɛns. Sɔm pipul dɛn dɔn ivin tɛl am se, "Yu sev mi layf."
So, if yu gɛt dɛn kayn sik ya, ɔr dɛn dɔn no se yu gɛt dis sik, di bɛst tin fɔ du na fɔ go to dɔktɔ we gɛt ɛkspiriɛns (i go fayn fɔ mek yu gɛt Riumatɔlɔjis) fɔ gɛt di rayt advays ɛn tritmɛnt . Dɔn bak, fɔ jɔyn sɔpɔt grup usay yu kin sheb ɛkspiriɛns lɛk dis go bi big tin fɔ mek yu maynd gɛt trɛnk.
Mɛsej we dɛn kin kɛr go na os
- Ankylosing Spondylitis (AS) na wan krεse sik we de afekt di spayna εn di joyn dεm. Mɔnin stiffness ɛn pen na di men sayn dɛm.
- We yu de liv wit dis sik, i rili impɔtant fɔ plan di tin dɛn we yu go du ɛvride bifo tɛm ɛn sɛt tɛm fɔ rɛst.
- Nɔr de slip wae gɛt fɔ du wit pen (painsomnia) na kɔmɔn tin. Dɛn kin ebul fɔ kɔntrol dis sik bay we dɛn mek wan rutin fɔ slip.
- If yu gɛt sayn dɛn lɛk dis ɔr dɛn dɔn no se yu gɛt dis sik, mek shɔ se yu go to yu dɔktɔ ɛn go to di rayt tritmɛnt ɛn advays.
- Nɔto yu wan de. Fɔ fɛn sɔpɔt grup usay yu kin kɔnɛkt wit ɔda pipul dɛn we dɔn go tru di sem kayn ɛkspiriɛns kin bi big sɔs fɔ mek yu maynd gɛt trɛnk.
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