Izindlela ze-MS: Indaba Yami Yokuxilongwa

-Delile

• UMatthew Walker, otholwe ngo-2013
• UDanielle Acierto, watholakala ngo-2004
• UValerie Hailey, watholakala ngo-1984

“Une-MS.” Noma ngabe ukhulunywe ngudokotela wakho wokunakekela oyinhloko, udokotela wakho wezinzwa, noma omunye wakho obalulekile, lawa magama amathathu alula anomthelela impilo yakho yonke.

Kubantu abane-multiple sclerosis (MS), "usuku lokuxilongwa" alunakulibaleka. Kwabanye, kuyashaqisa ukuzwa ukuthi manje baphila nesimo esingalapheki. Kwabanye, kuyimpumuzo ukwazi ukuthi yini ebangela izimpawu zabo. Kepha noma ngabe kuza kanjani noma nini, usuku ngalunye lokuxilongwa kwe-MS luhlukile.

Funda izindaba zabantu abathathu abaphila ne-MS, bese ubona ukuthi bakusingathe kanjani ukuxilongwa kwabo nokuthi banjani namhlanje.

UMatthew Walker, otholwe ngo-2013

“Ngiyakhumbula ngizwa‘ umsindo omhlophe ’futhi ngingakwazi ukugxila engxoxweni nodokotela wami,” kusho uMatthew Walker. “Ngikhumbula okuncane esasikhuluma ngakho, kodwa ngicabanga ukuthi bengimane ngigqolozele amasentimitha ambalwa kude nobuso bakhe, futhi ngigweme ukuxhumana nomama kanye nalowo owayenami. … Lokhu kuhunyushelwe onyakeni wami wokuqala ngine-MS, futhi nami angikuthathi ngokungathi sína. ”

Njengabaningi, uWalker wayecabanga ukuthi une-MS, kodwa wayengafuni ukubhekana namaqiniso. Ngosuku olulandelayo ngemuva kokutholakala kwakhe ngokusemthethweni, uWalker wadabula izwe lonke - esuka eBoston, eMassachusetts, waya eSan Francisco, eCalifornia. Lokhu kuhamba ngokomzimba kwavumela uWalker ukuthi agcine ukuxilongwa kwakhe kuyimfihlo.

"Bengihlala ngiluhlobo lwencwadi evulekile, ngakho ngiyakhumbula ukuthi into enzima kakhulu kimi isifiso sokuyigcina iyimfihlo," usho njalo. "Futhi umcabango wokuthi, 'Kungani ngikhathazeke kangaka ukutshela noma ubani? Ingabe kungenxa yokuthi isifo esibi kangaka? ’”

Kwakuwumuzwa wokuphelelwa yithemba ezinyangeni ezimbalwa kamuva okwaholela ekutheni aqale ibhulogi futhi athumele ividiyo ye-YouTube ngokuxilongwa kwakhe. Wayephuma ebudlelwaneni besikhathi eside futhi wabona isidingo sokuxoxa indaba yakhe, ukuveza ukuthi une-MS.

"Ngicabanga ukuthi inkinga yami bekungukuphika kakhulu," usho kanje. "Ukube bengingabuyela emuva ngesikhathi, ngabe ngiqale ukwenza izinto ngokuhluke kakhulu empilweni."

Namuhla, ujwayele ukutshela abanye nge-MS yakhe kusenesikhathi, ikakhulukazi amantombazane afuna ukuthandana nawo.

“Yinto okufanele ubhekane nayo futhi yinto okuzoba nzima ukubhekana nayo. Kodwa kimi uqobo, eminyakeni emithathu, impilo yami yathuthuka kakhulu futhi kusukela osukwini engatholwa ngalo kuze kube manje. Akuyona into ezokwenza impilo ibe nzima. Kukuwe lokho. ”

Noma kunjalo, ufuna abanye abane-MS bazi ukuthi ukutshela abanye ekugcineni kuyisinqumo sabo.

“Nguwena kuphela umuntu okuzodingeka abhekane nalesi sifo nsuku zonke, futhi nguwe wedwa okuzofanele ubhekane nemicabango nemizwa yakho ngaphakathi. Ngakho-ke, ungazizwa ucindezelwa ukuba wenze noma yini ongakhululekile ngayo. ”

UDanielle Acierto, watholakala ngo-2004

Njengomuntu ophakeme esikoleni esiphakeme, uDanielle Acierto wayesevele enokuningi engqondweni yakhe lapho ethola ukuthi une-MS. Njengomuntu oneminyaka engu-17, wayengakaze ezwe ngisho nangesifo.

Uthi: “Ngangizizwa ngilahlekile. “Kodwa bengiyibambile, ngoba kuthiwani uma bekungeyona ngisho into efanele ukukhala ngayo? Ngazama ukuyidlala ngathi ayilutho kimi. Kwakungamazwi amabili nje. Bengingazukuyivumela ingichaze, ikakhulukazi uma nami bengingazi ncazelo yalawo magama. ”

Ukwelashwa kwakhe kwaqala ngaso leso sikhathi ngemijovo, okwadala ubuhlungu obukhulu emzimbeni wakhe wonke, kanye nokujuluka ebusuku nokugodola. Ngenxa yale miphumela engemihle, uthishanhloko wakhe wesikole wathi wayengahamba ekuseni kakhulu usuku nosuku, kodwa lokho kwakungekhona lokho u-Acierto ayekufuna.

Uthi: "Ngangingafuni ukuphathwa ngendlela ehlukile noma nganoma yikuphi ukunakwa okukhethekile." “Ngangifuna ukuphathwa njengabo bonke abantu.”

Ngenkathi esazama ukuthola ukuthi kwenzakalani ngomzimba wakhe, umndeni wakhe nabangane nabo, bebenjalo. Umama wakhe ngephutha wabheka i- "scoliosis,", kanti abanye babangani bakhe baqala ukuyifanisa nomdlavuza.

Uthi: “Into ebinzima kakhulu ukutshela abantu bekuchaza ukuthi i-MS iyini,” esho. “Ngokuqondane nalokho, kwenye yezitolo ezinkulu eziseduze nami, baqala ukudlulisa amasongo osizo e-MS. Bonke abangane bami bathenga amasongo ukuze bangixhase, kodwa bebengazi ukuthi yini futhi. ”

Akakhombisanga zimpawu zangaphandle, kodwa wayelokhu ezwa ukuthi impilo yakhe manje isikhawulelwe ngenxa yesimo sakhe. Namuhla, uyabona ukuthi lokho akulona neze iqiniso. Iseluleko sakhe ezigulini ezisanda kutholakala ukuthi angayeki.

"Akufanele ukuvumele ukuthi kukubambezele ngoba ungenza noma yini oyifunayo namanje," esho. "Ingqondo yakho kuphela ekubambezele."

UValerie Hailey, watholakala ngo-1984

Inkulumo eshisiwe. Lokho kwakuyisibonakaliso sokuqala sikaValerie Hailey se-MS. Odokotela baqale bathi unesifo sangaphakathi endlebeni, base besibeka kolunye uhlobo lokutheleleka ngaphambi kokuba bamthole “ene-MS engaba khona.” Lokho kwenzeka eminyakeni emithathu kamuva, lapho eneminyaka engu-19 kuphela ubudala.

"Ngesikhathi ngitholwa okokuqala, i- [MS] yayingakhulunywa ngayo futhi yayingekho ezindabeni," usho kanje. "Njengoba ungenalo ulwazi, ubazi kuphela noma yikuphi ukuhleba okuzwile ngakho, futhi lokho bekusabisa."

Ngenxa yalokhu, uHailey uthathe isikhathi sakhe etshela abanye. Wayekufihlela abazali bakhe, futhi watshela isoka lakhe kuphela ngoba ecabanga ukuthi unelungelo lokwazi.

"Ngangesaba ukuthi uzothini uma ngingehla ngophakathi ngiphethe induku emhlophe esongwe ngombala ohlaza okwesibhakabhaka, noma isihlalo esinamasondo sihlotshiswe ngemhlophe nangamaparele," esho. "Bengimnika ithuba lokuxhasa uma engafuni ukubhekana nenkosikazi egulayo."

UHailey wayesaba isifo sakhe, futhi wesaba ukutshela abanye ngenxa yehlazo elihambisana naso.

“Ulahlekelwa abangane ngoba becabanga ukuthi,‘ Akakwazi ukwenza lokhu noma lokhuya. ’Ucingo luyeka kancane kancane lukhale. Akusekho kanjalo manje. Ngiyaphuma ngiyokwenza konke manje, kodwa leyo bekufanele kube yiminyaka yobumnandi. ”

Ngemuva kwezinkinga zokubona eziphindaphindayo, uHailey kwadingeka ashiye umsebenzi wakhe wamaphupho njengochwepheshe oqinisekisiwe we-ophthalmic kanye ne-excimer laser eStanford Hospital aqhubeke nokukhubazeka unomphela. Wayedumele futhi ethukuthele, kodwa uma ebheka emuva, uzizwa enenhlanhla.

Uthi: “Le nto embi yaphenduka isibusiso esikhulu kunazo zonke. “Ngangikujabulela ukutholakala nezingane zami noma nini lapho zingidinga. Ukubabuka bekhula bekuyinto ebengizophuthelwa yona impela uma ngingcwatshwa kulo msebenzi wami. ”

Uyazisa kakhulu impilo namuhla kunanini ngaphambili, futhi utshela ezinye iziguli ezisanda kutholakala ukuthi kuhlale kunecala eliqhakazile - noma ungalindelanga.