MS Maonero: Yangu Yekuziva Nyaya

Zvemukati

• Matthew Walker, akawanikwa muna 2013
• Danielle Acierto, akaonekwa muna 2004
• Valerie Hailey, akawanikwa muna 1984

"Une MS." Kunyangwe zvataurwa nachiremba wako wekutanga wekuchengeta, chiremba wezveuropi, kana mumwe wako akakosha, aya matatu mazwi akareruka ane hupenyu hwese.

Kune vanhu vane multiple sclerosis (MS), "zuva rekuziva" harikanganwiki. Kune vamwe, zvinotyisa kunzwa ivo vava kurarama neyakagara mamiriro. Kune vamwe, chinhu chakasununguka kuziva zviri kukonzera zviratidzo zvavo. Asi zvisinei kuti sei kana zvasvika, zuva rega rega rekuongororwa kweMS rakasarudzika.

Verenga nyaya dzevanhu vatatu vanogara neMMS, uye ona kuti vakaita sei nekuongororwa kwavo uye kuti vari sei nhasi.

Matthew Walker, akawanikwa muna 2013

"Ndinoyeuka ndichinzwa 'ruzha ruchena' uye ndisingakwanise kuisa pfungwa pakukurukurirana nachiremba wangu," anodaro Matthew Walker. "Ndinoyeuka zvishoma zvatakataura nezvazvo, asi ndinofunga ndanga ndichingotarisa masendimita mashoma kubva kumeso kwake, uye ndichinzvenga kutarisana nemaziso naamai vanguwo vandaive navo. … Izvi zvakashandurwa mugore rangu rekutanga neMS, uye neni ndisiri kurikoshesa. ”

Kufanana nevakawanda, Walker akafunga kuti aive neMS, asi aisada kutarisana nezvakanaka. Zuva rakatevera mushure mekuonekwa zviri pamutemo, Walker akatenderera nenyika - kubva kuBoston, Massachusetts, kuenda kuSan Francisco, California. Iko kufamba kwepanyama kwakabvumidza Walker kuchengetedza kubatwa kwake pachivande.

"Ndakagara ndiri bhuku rakavhurika, saka ndinorangarira chakaomesesa kwandiri chishuwo chekuchengeta chakavanzika," anodaro. "Uye iyo pfungwa, 'Sei ndiri kunetseka kudaro kuudza chero munhu? Imhaka yekuti chirwere chakashata kudai here? ’”

Kwaive kunzwa kwekusuwa kwemwedzi yakati wandei zvakazomuendesa kutanga blog uye kutumira vhidhiyo yeYouTube nezve kuzivikanwa kwake. Akanga achiuya kubva kuhukama hwakareba uye akanzwa kuda kwekugovana nyaya yake, kuratidza kuti aive neMS.

"Ndinofunga kuti dambudziko rangu raive rekuramba," anodaro. "Dai ndaigona kudzokera kumashure munguva, ndingadai ndakatanga kuita zvinhu zvakasiyana zvakanyanya muhupenyu."

Nhasi, anowanzo kuudza vamwe nezve MS yake kutanga, kunyanya vasikana vaari kutsvaga kudanana navo.

"Ndicho chinhu chaunofanira kubata nacho uye ndechimwe chinhu chinozonetsa kubata nacho. Asi kwandiri pachangu, mumakore matatu, hupenyu hwangu hwakavandudzika zvakanyanya uye kubva pazuva randakaonekwa kusvika ikozvino.Haisi chimwe chinhu chinoita kuti hupenyu huwedzere. Zviri kwauri. "

Zvakadaro, anoda kuti vamwe vane MS vazive kuti kuudza vamwe ndicho chisarudzo chavo.

“Ndiwe wega munhu anofanirwa kusangana nechirwere ichi mazuva ese, uye ndiwe wega uchafanirwa kubata nepfungwa dzako nemanzwiro ako mukati. Saka, usanzwa uchimanikidzwa kuita chero chinhu chausingagutsikane nacho. "

Danielle Acierto, akaonekwa muna 2004

Semunhu mukuru kuchikoro chesekondari, Danielle Acierto anga atove nezvakawanda mupfungwa dzake paakaziva kuti aive neMS. Semunhu ane makore gumi nemanomwe, aive asati ambonzwa nezve chirwere ichi.

“Ndakanzwa ndarasika,” anodaro. “Asi ndakaibata mukati, nekuti ko dai yanga isiri chinhu chakakosha kuchema nezvayo? Ndakaedza kuitamba kunge yanga isiri chinhu kwandiri. Aingova mazwi maviri chete. "Ini ndanga ndisiri kuzoirega ichinditsanangura, kunyanya kana ini pachangu ndanga ndisati ndatoziva kududzirwa kwemazwi maviri aya."

Kurapwa kwake kwakatanga ipapo nemajekiseni, ayo akakonzera kurwadziwa kwakanyanya mumuviri wake wese, pamwe nekudikitira kweusiku uye kutonhora. Nekuda kwemhedzisiro iyi, mukuru wechikoro chake akati aigona kukurumidza kubva zuva rega rega, asi handizvo zvaida Acierto.

"Ini ndaisada kubatwa zvakasiyana kana nechero hanya," anodaro. "Ndaida kubatwa sevamwe vese."

Paaive achiri kuyedza kufunga kuti chii chaiitika nemuviri wake, mhuri yake neshamwari vaive, futi. Amai vake vakatarisa vakatarisa kumusoro "scoliosis,", apo dzimwe shamwari dzake dzakatanga kuzvienzanisa nekenza.

"Chikamu chakaomesesa chekuudza vanhu kwaive kutsanangura kuti MS yaive chii," anodaro. “Zvakangoitikawo, pane imwe nzvimbo yezvitoro padhuze neni, vakatanga kuendesa mabhandara eMS ekutsigira. Shamwari dzangu dzese dzakatenga zvishongo kuti vanditsigire, asi vaisanyatsoziva kuti chaive chii. "

Haana kuratidza chero zviratidzo zvekunze, asi akaramba achinzwa kuti hupenyu hwake hwaive hwaganhurirwa nekuda kwehutano hwake. Nhasi, iye anoziva izvo hazvisi zvechokwadi. Zano rake kuvarwere vachangobva kuongororwa harisi rekurega.

"Haufanire kurega zvichikubata nekuti unogona kuita chero chaunoda," anodaro. "Ingori pfungwa dzako dziri kukutadzisa."

Valerie Hailey, akawanikwa muna 1984

Kutaura kwakadzikama. Icho chaive chiratidzo chekutanga chaValerie Hailey cheMS. Vanachiremba vakatanga vataura kuti aive nechirwere chemukati chenzeve, ndokuzozvipomera pane rumwe rudzi rwehutachiona vasati vamuwana aine "fungidzira MS." Akanga ari makore matatu gare gare, apo iye aingova bedzi namakore 19 okukura.

"Pandakatanga kuongororwa, [MS] haina kutaurwa nezvayo uye yakanga isiri munhau," anodaro. "Usina ruzivo, iwe waingoziva chero makuhwa awakanzwa nezvazvo, uye zvaityisa."

Nekuda kweizvi, Hailey akatora nguva yake achiudza vamwe. Akazvichengeta chakavanzika kubva kuvabereki vake, uye akangomuudza chikomba nekuti aifunga kuti ane kodzero yekuziva.

"Ndanga ndichitya zvaaizofunga kana ndikaburuka munzira nemudonzvo muchena wakaputirwa neumambo hwebhuruu, kana wiricheya yakashongedzwa nemuchena nemaparera," anodaro. "Ndanga ndichimupa mukana wekutsigira kana asingade kubata nemukadzi anorwara."

Hailey aitya chirwere chake, uye aitya kuudza vamwe nekuda kwekunyadziswa kwakabatana nako.

“Unorasikirwa neshamwari nekuti vanofunga kuti,‘ Haagone kuita ichi kana icho. ’Foni inongomira kurira zvishoma nezvishoma. Hazvina kudaro izvozvi. Ini ndinobuda ndoita zvese izvozvi, asi iwo anga achifanirwa kuve makore anonakidza. ”

Mushure mekudzokororazve matambudziko ekuona, Hailey aifanira kusiya basa rake rekurota seakavhenekwa ophthalmic uye excimer laser tekinoroji kuStanford Hospital ndokuenda mukuremara zvachose. Akanga aora mwoyo uye akatsamwa, asi achitarisa kumashure, anonzwa rombo rakanaka.

"Ichi chinhu chinotyisa chakashanduka chikomborero chikurusa," anodaro. “Ndakakwanisa kunakidzwa nekuwanikwa nevana vangu pese pavaindida. Kuvatarisa vachikura ndicho chinhu chandingadai ndakarasikirwa nacho dai ndakavigwa pabasa rangu. ”

Anokoshesa hupenyu zvakanyanya nhasi kupfuura nakare kose, uye anoudza vamwe varwere vachangobva kuongororwa kuti panogara paine divi rakajeka - kunyangwe iwe usingazvitarisiri.