Imajin, yu de fil rili rifresh dis mɔnin. Yu nɔ gɛt ɛni pen na yu bɔdi. Yu kin du ɔl di wok dɛn we yu de du ɛvride fayn fayn wan. Bɔt we yu wek tumara mɔnin, yu kin fil lɛk se yu nɔ ebul fɔ ivin grap na bed. Yu wan ol bɔdi de at ɛn taya. Yu no fit ivin tink abaut di wok we yu du wel yestade. Dis na sityueshɔn wae de sik kin bɔrku ɛn dɔŋ de to de, wik to wik, wae wi kin kɔl ‘Dynamic Disability’ na mɛrɛsin. Pan ɔl we dis na tɔpik we kɔmpleks smɔl, lɛ wi tɔk bɔt am jɔs tide.
Wetin na ‘Dynamic Disability’?
Fɔ tɔk am simpul wan, ‘dynamic disability’ na we di sayn dɛm fɔ wan kɔndishɔn nɔr kin de di sem ɔltɛm, bɔt kin chenj in intensiti ɛn siriɔs as tɛm de go. Sɔm dez yu kin woke nɔrmal wan. Bɔt ɔda de, dɛn sayn dɛn de kin bɔku wantɛm wantɛm (wi kin kɔl dis ‘flare-up’) ɛn mek i nɔ izi fɔ yu fɔ du yu ɛvride wok.
Dɛn tɛm ya wae de sik kin de fɔ sɔm dez, sɔm wik, ɔr ivin sɔm mɔnt. Afta dat, de sik kin stɔp ɛn kam bak to nɔmal.
De tin wae impɔtant pas ɔl fɔ ɔndastand na dis: Na de wae yu de fil fayn, pɔrsin wae si yu nɔr kin ivin tink se yu gɛt disabled. Dɛn go si yu as pɔsin we gɛt wɛlbɔdi. Dis na di rizin we mek sɔm pipul dɛn kin ivin tink se yu de "lay."
Di difrɛns bitwin ‘gud de’ ɛn ‘bad de’.
Fɔ ɔndastand dis sityueshɔn mɔ, lɛ wi luk dis chɔt. Dis go sho yu klia wan di difrɛns bitwin tu dez fɔ pɔrsin wae gɛt ‘dynamic disability’ kɔndishɔn.
| Tin | Adu-o | Bad De / Flare-up we yu de du |
|---|---|---|
| We yu de waka/we yu de du ɛksɛsayz | Yu kin waka izi wan ɛn du sɔm ɛksesaiz. | I at fɔ ivin grap na bed, mi wan ol bɔdi de at, ɛn i at fɔ waka. |
| Wok/Skul | Go wok, yu kin wok wit atɛnshɔn. | A nɔ ebul fɔ go wok, i at fɔ pe atɛnshɔn pan ɛnitin. |
| Sɔshial kɔnekshɔn dɛn | A kin fil lɛk fɔ mit mi padi dɛn, go travul, ɛn tek pat pan fayn tɔk dɛn. | A nɔ ivin fil fɔ tɔk to ɛnibɔdi, a jɔs de na os. |
| Di we aw pɔsin de tink | A gladi ɛn a gɛt trɛnk. | Pen ɛn nɔ ebul fɔ ɛp yu kin mek yu at pwɛl ɛn vɛks. |
Kɔmɔn mɛdikal kɔndishɔn dɛm wae kin mek yu gɛt ‘dynamic disability’.
Dis sik nɔr kin jɔs bi fɔ wan sik. ‘Dynamic disability’ kin apin wit ɛni sik we nɔr de mɛn we in sayn dɛm kin chenj frɔm de to de. Sɔm ɛgzampul dɛn na:
- Ankylosing Spondylitis (AS): Dis na at at sik we de afɛkt di spayna ɛn ɔda jɔyn dɛn na di bɔdi. Sɔm de di pen ɛn stiff nɔ kin so, bɔt ɔda de dɛn di pen kin so bad dat i nɔ kin izi fɔ ivin ol di spayna stret.
- Multiple Sclerosis (MS): Dis na sik we de afɛkt di bren ɛn di spɛshal kɔd (nervous system). Di simptom dεm kin kam εn go (relaps), dεn kin go kכmplit כ pat (rεmishכn) afta fכ de כ wik. Dɛn kin kɔl dis bak di sik we de kam bak . Sɔntɛm yu nɔ go gɛt ɛni prɔblɛm fɔ sɔm mɔnt ɔ ia.
- Ɔda tin dɛm: Apat frɔm dat, pipul dɛm wae gɛt krɛse sik lɛk rεumatoid arthritis, lupus, fibromyalgia, ɛn Crohn’s disease kin gɛt dis ‘dynamic disability’ kכndyushכn bak.
‘Dynamic Disability’ ɛn ‘Invisible Disability’ na di sem tin?
Pan ɔl we bɔku tɛm dɛn kin kɔnfyus dɛn tu wɔd ya as wan, smɔl difrɛns de bitwin dɛn tu wɔd ya.
- ‘Disabiliti we nɔ de si’: de tɔk bɔt ɛni disabiliti we di pipul dɛn we de na do nɔ de si. Fɔ ɛgzampul, pɔsin we nɔ de wɛr glas, we nɔ de si fayn, we nɔ de fil pen, we gɛt maynd sik, ɔ we nɔ de yɛri fayn. Dɛn tin ya nɔ de we pipul dɛn we de na do de si.
- ‘Dynamik Disabiliti’: 1.Dis kin bi tru mɔ fɔ di kɔndishɔn wae de sik kin de chenj , wae min se dɛn kin chenj frɔm de to de.
Fɔ tɔk am simpul wan, ‘daynamik disabiliti’ kin bi ‘disabiliti we pɔsin nɔ de si.’ Bɔt nɔto ɔl ‘disabiliti we pɔsin nɔ de si’ na ‘dinamik.’
De chalenj dɛm fɔ liv wit dis kɔndishɔn
Fɔ liv wit ‘daynamik disabiliti’ nɔr izi. Bɔku rizin dɛn de fɔ dat.
1. Misɔndastandin frɔm ɔda pipul: "Yu bin fayn yestede, wetin mek yu de ledɔm na bed tide?" "Yu fɔ dɔn bost." I kin at we yu yɛri stori dɛn lɛk dis. Pipul nɔ de si yu sityueshɔn, so dɛn tink se yu de lay.
2. I nɔ izi fɔ plan: I kin mek yu fred fɔ plan sɔntin lɛk fɔ go trip wit yu padi dɛn ɔ fɔ atɛnd wan ivent bikɔs if yu sik dɛn wɔs na di las minit, yu go gɛt fɔ kansel ɔltin.
3. Wok ɛn Edukeshɔn: Ivin if yu kin go wok tide, di nɔ shɔ if yu go ebul fɔ go tumara de mek i nɔ izi fɔ ol yu wok we nɔ de chenj ɛn kɔntinyu fɔ lan buk.
4. Gilt: Fo gud de, yu de fil laik, "Oh, a shud don wok moch." Na bad de, yu kin fil gilti, "A de mek ɔda pipul dɛn sɔfa bikɔs ɔf mi."
So aw yu de dil wit dis tin we de apin?
Pan ɔl dɛn prɔblɛm ya, if yu gɛt di rayt sɔpɔt ɛn manejmɛnt, yu go ebul fɔ liv fayn layf.
- Tɔk to yu dɔktɔ: Dis na di tin we impɔtant pas ɔl. Bi klia to yu dɔktɔ bɔt aw yu sik kin chenj frɔm wan de to ɔda de. Fɔ kip wan dayari fɔ di sayn dɛm kin ɛp yu bad bad wan. Dis min se yu fɔ rayt yu bad de dɛn, yu gud de dɛn, ɛn aw yu bin de du dɛn de dɛn de. Dis go ɛp yu dɔktɔ fɔ ɔndastand yu sik mɔ ɛn mɔ ɛn mek di bɛst tritmɛnt plan.
- Bi gud to yusɛf: Nɔ bit yusɛf fɔ di tranga de dɛn. Lisin to yu bɔdi. Tek smɔl tɛm fɔ blo if yu nid am.
- Tɔk to yu: Ɛksplen yu famili, yu tayt padi dɛn, ɛn pɔsin we yu kin abop pan na yu wokples, bɔt wetin de apin to yu. We dɛn ɔndastand wetin de apin to yu, i go izi fɔ dɛn fɔ gi yu di sɔpɔt we yu nid.
- Yuz yu ‘gud de dɛn’ wit sɛns: Nɔ tray pasmak bay we yu de du tumɔs wok pan yu gud de dɛn. If yu du dat, yu go mɔs gɛt ‘flare-up’ di nɛks de. Manej yu ɛnaji.
Pan ɔl we i nɔ kin izi fɔ liv wit dis sik, mɛmba se nɔto yu wangren de. If yu gi yu di rayt mɛrɛsin, sɔpɔt frɔm di wan dɛn we yu lɛk, ɛn du gud to yusɛf, yu kin mek dis waka izi.
Mɛsej we dɛn kin kɛr go na os
- ‘Dynamic Disability’ na rial mεdikal kכndyushכn wae de kayn sik wae yu de fil kin chenj frכm de to de כ wan tεm.
- Dis nɔ min se yu de ‘lay’ ɔ ‘lɛs’.
- Yu gud de ɛn yu bad de ɔl na pat pan yu sik.
- E fayn fɔ tɔk bɔt yu sik wit yu dɔktɔ , yu fambul, ɛn yu padi dɛn we yu kin abop pan.
- We yu lan fɔ kɔntrol yu ɛnaji ɛn rɛst we nid de, dat kin mek layf izi.
- Nɔto yu wan de. Nɔ ɛva shem fɔ go fɛn di rayt dɔktɔ.
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