Aw fɔ liv wit di pen fɔ AS (Ankylosing Spondylitis) .

I at fɔ put insay wɔd di filin wae yu kin gɛt wae yu gɛt wan sik wae de mek yu fil pen, wae de mek yu layf de pan denja lɛk Ankylosing Spondylitis (AS) na di bɛst tɛm na yu layf, wae yu yɔŋ ɛn ful wit drim, op, ɛn plan. Na wan say, yu de tray fɔ bigin yu layf bak, ɛn na di ɔda say, yu fɔ gɛt dis kayn prɔblɛm. Dis na rili ebi lod. Bɔt sɔm pipul dɛn de pan wi we dɔn fɛn we fɔ liv fayn fayn wan wit dis sik ɛn kam fɔ gri wit dɛn nyu layf. Tide, wi de tɔk bɔt tu pipul dɛn we tan lɛk dis.

‘A bin rili fred’ – Ivan in stori

Ivan dɔn sɔfa wit prɔblɛm fɔ waka frɔm we i smɔl. Sɔntɛnde, i bin gɛt fɔ yuz stik ɛn tek mɛrɛsin fɔ mek i nɔ fil pen fɔ mek i go ebul fɔ pas di de. I bin bigin fɔ tink gud wan bak we i bin yɔŋ fɔ bia wit dis pen.

We Ivan bin ol 21 ia, we i bin de stɔdi fɔ wan nɔs ɛgzam, i bin kam fɔ no se di sayn dɛn we i bin dɔn de gɛt fɔ lɔng tɛm bin rili fiba wan sik we dɛn bin tɔk bɔt na wan buk we dɛn rayt fɔ di ɛgzam. Wit da saspekshɔn de, i go to wan dɔktɔ we de mɛn di sik we de mek pɔsin in bɔdi gɛt rɔm, we na dɔktɔ we spɛshal pan prɔblɛm dɛn we gɛt fɔ du wit jɔyn ɛn spayna. Afta dɛn dɔn tɛst am, dɛn bin kam fɔ no se i gɛt wan sik we dɛn kɔl Ankylosing Spondylitis (AS).

Di big big fred we bin kam na in maynd wit dis nyus na bɔt di wok we i bin dɔn pik.

Ivan se: “We a bin gɛt wok as nɔs we de wok na di Imejɛnsi Tritmɛnt Yunit (ETU), a bin rili fred.” "A bin de fred se if a get flare-up, a no go fit wok. A rialize se if a wan stop di nait dream fo bi disabled fo mai 20s fo kom tru, a get fo tek kia of mai helt fo evri we we a fit."

So, i bigin fɔ si wan pen sayɛnsman we tich am aw fɔ kɔntrol pen we i nɔ tek mɛrɛsin. I bin tray bak wan tritmɛnt we dɛn kɔl Akseptans ɛn Kɔmitmɛnt Tɛrapi (ACT) . Fɔ tɔk am simpul wan, dis tritmɛnt de ɛp wi fɔ stɔp fɔ fɛt wi tink ɛn filin ɛn insted fɔ aksept dɛn.

Ivan se: "A bin jɔs atɛnd sɔm pan dɛn tɛrapi sɛshɔn dɛn de. Bɔt i ɛp mi fɔ win pas tɛn ia we a bin de fil pen na mi maynd ɛn pwɛl at." "A pik to aksept dis situeshɔn. A gladi fɔ di chans fɔ win dis chalenj ɛn liv gladi layf."

Viktor Frankl in buk we nem ‘Man’s Search for Meaning’ dɔn bak bi big inspɛkshɔn fɔ am fɔ divɛlɔp dis maynd. Di buk tɔk bɔt di tɛm we i bin de na prizin na wan Nazi kɔnsɛntreshɔn kamp. I de tɔk bɔt aw i bin liv wit rɛspɛkt insay da tranga tɛm de ɛn i bin gɛt minin na layf.

Ivan in kɔndishɔn dɔn de na rɛmishɔn fɔ 14 mɔnt naw.Fɔ it fayn, mɛrɛsin dɛn we dɛn tɛl am fɔ gi am, ɛn ɛksesaiz (i de du yoga, es in wet, ɛn du at le 75 minit kardio insay di wik) ɔl dis dɔn rili ɛp am fɔ mek i wɛl.

"A gladi bad bad wan fɔ gɛt di chans fɔ wok fayn fayn wan ɛn fil se a gɛt sakrifays as nɔs. Dɔn bak, a gladi fɔ AS, insay wan we. Bikɔs i dɔn fos mi fɔ put mi maynd ɛn bɔdi wɛlbɔdi fɔs we a yɔŋ."

I se: “A stil gɛt pen ɛn stif, bɔt a rili gladi fɔ liv mi layf tide, fri frɔm di bad bad sik dɛn we bin de mɔna mi fɔ 10 ia.” I de pripia bak fɔ fulfil wan pan in big drim dɛm: fɔ tek wan ɔ tu ia ɔf frɔm nɔs ɛn baysikul fɔ krɔs kɔntinɛnt dɛm.

‘A bin tink se na ɔl mi fɔlt’ – Tristan in stori

Insay 2013, Tristan na bin brayt studɛnt we bin de du digri pan kemistri. Bɔt insay di spring insay da ia de, i bigin fɔ fil taya we i nɔ ebul fɔ ɛksplen. I nɔ bin ebul fɔ grap na mɔnin, ɛn i bigin fɔ mis skul wok.

"A bin tink se a nɔ gɛt disiplin. A bin tink se na ɔl mi fɔlt," na so i se.

Na leta nɔmɔ Tristan kam fɔ no se i gɛt wan sik we dɛn kɔl non-radiographic axial spondyloarthritis (nr-AxSpA), we na wan kayn AS. Fɔ tɔk am simpul wan, ɔl tu di AS ɛn nr-AxSpA na inflameshɔn na di spayna. insay nr-AxSpA, di damej pan di spayna nכ de klia pan εks-ray biכs fכ di fכs stej dεm fכ di sik. As di sik de go bifo, di vεrbra dεm na di spayna kin fכs tכgeda. Sɔntɛnde, dis kin afɛkt ɔda pat dɛn lɛk di yay.

"Di prɔblɛm na, we di inflamɛns insay mi bɔdi de bɔku, i kin fil lɛk se mi bren de wok go dɔŋ. I tan lɛk 'bren fɔg,'" na so i ɛksplen.

"We a bin de stɔdi kemistri, a nɔ bin ebul fɔ du lab wok. I bin nid fɔ tinap fɔ lɔng tɛm ɛn tek tɛm ol glas, bɔt a bin si am se i nɔ izi."

We di ɛnd, i bin gɛt fɔ mek wan disizhɔn we rili at - fɔ lɛf skul.

"A bin bi pɔsin we bin gɛt wan rili pashɔn ɛn drim fɔ wok na di fild fɔ kemistri. Fɔ lɔs ɔl dat bin rili at fɔ bia," i se.

Bɔt Tristan nɔ bin stɔp de. I disayd fɔ opin ɔda domɔt. Pan ɔl we i nɔ bin ɛva bi atlet, ɛksesaiz bin bi impɔtant tin na in layf. I bigin fɔ du hip ɛn bak strɛch ɛn es mɔdaret wet. Bɔt di rial sta we i bin de yuz fɔ wok na wan tin we dɛn kɔl vaybreshɔn plet . Dis tin de mek di mɔsul dɛn kɔntrakt ɛn rilaks bɔku tɛm insay wan sɛkɔn. Dɛn se i kin mek i gɛt mɔ trɛnk, i kin ebul fɔ chenj, ɛn i kin mek i nɔ fil pen. Tristan kin yuz am fɔ 10 minit ɛvri mɔnin.

"Dɛn vaybreshɔn dɛn de rili lɔs di stiffness na mi bɔdi. Sɔntɛnde a kin strɛs bad bad wan wit mi jɔyn dɛm, bɔt afta a dɔn du dis, a kin fil fridɔm wantɛm wantɛm."

Afta we i dɔn wɛl smɔl, na tɛm fɔ fɛn wok we fit in nyu layf. Tristan bin tich insɛf fɔ mek kɔmpyuta program. Tide, i de wok as kɔmpyuta programma.

Naw Tristan de wok ɔnda wan bɔs we ɔndastand in kɔndishɔn ɛn di prɔblɛm dɛn we i de briŋ.

"A stil get had taim fo wok from 9am to 5pm laik evribodi. Di moning rush na im bi di hardest. Bot a laki, bikos mai bos de andastan and helep mi."

I se: “I at fɔ dil wit we yu nɔ gɛt di layf we yu want.” "A bin de bi ova-achiva, 'type-A' pesonaliti. A don get fo aksept se a no de fast laik aw a bin de fast, and se a no nid to du ekstrem tins to bi hapi."

"A kin go bak na os naw ɛn ɛnjɔy wan kwayɛt ivintɛm, ɛn ɛnjɔy fɔ waka shɔt na di pak. I bin rili at fɔ rich dis say, bɔt di we aw a de luk layf dɔn chenj ɔltogɛda."

Dɛn tu stori ya de sho wi aw i nɔr kin izi fɔ liv wit wan sik wae nɔr de mɛn lɛk AS. Bɔt if yu gɛt di rayt advays we dɔktɔ gi yu, yu go sɔpɔt yu maynd, yu chenj yu layf, ɛn yu gɛt strɔng abit, .Dɛn de pruv to wi se wi go ebul fɔ win dis prɔblɛm togɛda. If yu de sɔfa wit dis kayn tin, nɔ tink se na yu wangren de. Tɔk to yu dɔktɔ ɛn gɛt di ɛp we yu nid.