Zuva muHupenyu hweMS Kudzokazve

Zvemukati

• 5:00 a.m.
• 6:15 a.m.
• 6:17 a.m.
• 6:20 a.m.
• 6:23 a.m.
• 11:30 a.m.
• 12:15 pm
• 2:30 p.m.
• 9:30 p.m.
• 9:40 p.m.

Ndakaonekwa kuti ndaizodzokazve ndichiregedza multiple sclerosis (RRMS) muna 2005, pazera remakore makumi maviri nemasere. Kubva ipapo, ndakasangana nezvakadai kuve ndakaoma mitezo kubva muchiuno kudzika uye kupofomara muziso rangu rerudyi uye kuva nekuziva kurasikirwa kwete kusiyana nekutanga kutanga kweAlzheimer's. Ini zvakare ndave necervical fusion uye, nguva pfupi yadarika, kudzoka kwandakanga ndakaoma mutezo parutivi rwese rwerudyi rwemuviri wangu.

Yangu MS inodzokazve yakave iine akasiyana mapfupi- uye marefu-marefu mhedzisiro pahupenyu hwangu. Ndakave nerombo rakanaka rekuwana kuregererwa mushure mekudzokazve, zvisinei, kune mhedzisiro yemhedzisiro mhedzisiro yandinorarama nayo mazuva ese. Kudzoka kwandakaita nguva pfupi yapfuura kwakandisiya ndiine chiveve zvekare uye kurira kurudyi kwangu, pamwe nenyaya dzekuziva.

Izvi ndizvo zvinoita zuva repakati kwandiri kana ndiri kusangana neMS kudzokazve.

5:00 a.m.

Ndakarara pamubhedha, ndisina zororo uye ndakabatwa pakati pekumuka nehope. Handina kurara husiku hwese kweanopfuura makumi maviri kana makumi matatu maminitsi panguva. Mutsipa wangu wakaomarara uye unorwadza. Vanoti MS haina kurwadziwa. Udza izvo kune wangu unopisa musana lesion, uchimanikidza yakanangana netitanium ndiro mumutsipa wangu. Nguva dzese dzandinofunga kuti MS flare ups iri mumashure mangu, boom, ndipo pavari zvekare. Uyu ari kunyatso kutanga kubata.

Ndinofanira kutota. Ndakatoita kwekanguva. Dai chete AAA yaigona kutumira dhiragi yekundidhonza kubva pamubhedha, saka pamwe ndaigona kuzvitarisira izvozvo.

6:15 a.m.

Kurira kwe alarm kunovhundutsa mukadzi wangu akarara. Ndiri kumusana kwangu nekuti ndiyo chete nzvimbo yandinogona kuwana nyaradzo yechinguvana. Ganda rangu rinotsemuka zvisingaite. Ndoziva kuti itsinga dzinopera zvisirizvo, asi handigone kumira kukwenya. Ndichiri kufanira kutsemuka, asi handisati ndave kukwanisa kumuka zvakadaro. Mudzimai wangu anomuka, anouya kudivi rangu remubhedha, ndokusimudza gumbo rangu rakagwinha, rinorema rerudyi kubva pamubhedha ndokuradzika pasi. Ini handigone kufamba kana kunzwa ruoko rwangu rwerudyi, saka ndinofanira kumutarisa paanenge achiedza kundikwevera kuchinzvimbo chekugara, kubva kwandinogona kusimudza ruoko rwangu rwekuruboshwe rwakatenderedza. Zvakaoma kurasikirwa neiyo sensation yekubata. Ndinoshamisika kana ndichazomboziva kunzwa ikoko zvakare?

6:17 a.m.

Mudzimai wangu anodhonza zvasara zvangu kusvika kutsoka kubva pachigaro. Kubva pano, ndinogona kufamba, asi ndine tsoka-yekudonha kurudyi. Izvi zvinoreva kuti ndinogona kufamba, asi zvinoita kunge zombie inokamhina. Handizvitemba kuti ndodongorera ndakamira, saka ndinogara pasi. Iniwo ndakati rukutu padhipatimendi remapombi, saka ndinomirira kunzwa madonhwe achimwaya mvura yemuchimbuzi. Ini ndinopedzisa, ndosvina, uye ndinoshandisa yekushambidzira isina chinhu counter kuruboshwe kwangu kuti ndizvikwe kubva muchimbuzi.

6:20 a.m.

Hunyanzvi hwekugadzirisa kudzokazve kweMMS kuri kuwedzera nguva yaunoshandisa munzvimbo yega yega. Ndinoziva kuti pandinobva kuimba yekugezera, ichave yakareba nguva ndisati ndaizodzoka zvakare. Ini ndinotanga mvura yekugeza, ndichifunga kuti pamwe yekupisa yekugeza ichaita kuti marwadzo emutsipa wangu anzwe kuve nani. Iniwo ndafunga kukwesha mazino apo mvura ichidziya. Dambudziko nderekuti handikwanise kuvhara muromo wangu zvizere kurudyi, saka ndinofanira kuzendamira pasink sezvo mushonga wemazino unodonha kubva mumuromo mangu nekumhanya.

6:23 a.m.

Ini ndinopedzisa kukwesha ndoshandisa ruoko rwangu rweruboshwe kuyedza kutsveta mvura mumuromo mangu zvachose ajar kuti ndigeze. Ndinodaidzira mukadzi wangu kuti andibatsire zvakare nechikamu chinotevera cheangu maitiro emangwanani. Anouya kuimba yekugezera uye anondibatsira kubuda muT-shirt yangu nekupinda mushower. Akanditengera loofah padanda uye kugeza muviri, asi ndichiri kuda rubatsiro rwake kuti ndinyatsochena. Mushure mekugeza, anondibatsira kuti ndiome, ndipfeke, uye ndibude kuimba yekutandarira munguva yakaringana yekuonekana nevana vasati vaenda kuchikoro.

11:30 a.m.

Ndanga ndiri mune ino recliner kubva mangwanani. Ini ndinoshanda kubva kumba, asi ini ndakaganhurirwa zvakanyanya maererano nemabasa ebasa andinogona kubata izvozvi. Handikwanise kushandisa ruoko rwangu rwerudyi kutaipa zvachose. Ndinoedza kutaipa neruoko rumwe, asi ruoko rwangu rweruboshwe rwunoita kunge rwakanganwa zvekuita pasina ruoko rwekurudyi. Zvinopenga kupenga.

12:15 pm

Iri handiro dambudziko rangu chete rebasa. Mukuru wangu webasa anoramba achifona achindiudza kuti ndiri kurega zvinhu kuwira kuburikidza nekutsemuka. Ndinoedza kuzvidzivirira, asi ari kutaura chokwadi. Ndangariro yangu yenguva pfupi iri kunditadza. Zvinetso zvendangariro ndizvo zvakaipisisa. Vanhu vanogona kuona kushomeka kwangu panyama izvozvi, asi kwete hutsi hwehuropi huri kutora mutero pandiri nekuziva.

Ndine nzara, asi ini zvakare handina chinokurudzira chekudya kana kunwa. Handikwanise kana kurangarira kana ndadya mangwanani kana nhasi.

2:30 p.m.

Vana vangu vanosvika kumba vachibva kuchikoro. Ndichiri mumba yekutandarira, pachigaro changu, chaipo pandanga ndiri pavakabuda mangwanani ano. Ivo vane hanya neni, asi - pazera nyoro re6 uye 8 makore - havazive zvekutaura. Mwedzi mishoma yapfuura, ini ndaidzidzisa zvikwata zvavo zvebhora. Ikozvino, ndakanamatira mune semi-vegetative mamiriro kune mazhinji ezuva. Wangu ane makore matanhatu ekuberekwa anokwira uye anogara pamakumbo angu. Anowanzove nezvakawanda zvekutaura. Kwete nhasi, zvakadaro. Isu takangonyarara tichiona makatuni pamwechete.

9:30 p.m.

Mukoti wehutano hwepamba anosvika pamba. Hutano hwepamba ndiyo yega sarudzo yangu yekurapwa nekuti ini handina mamiriro ekubuda mumba izvozvi. Pakutanga, vakaedza kundirongera ramangwana, asi ndakavaudza kuti zvakakosha kuti nditange kurapwa kwangu nekukasira. Changu chandinonyanya kukoshesa kuita chero zvandinogona kuti ndidzorere iyi MS kudzokere muchizarira chayo. Iko hakuna nzira yandiri kuzomirira rimwe zuva.

Uku kuchave kuiswa kwemazuva mashanu. Mukoti achazvimisa manheru ano, asi mudzimai wangu achachinja mabhegi eIV kwemazuva mana anotevera. Izvi zvinoreva kuti ndichafanira kurara neine tsono IV yakanamirwa zvakadzika mutsinga dzangu.

9:40 p.m.

Ndinoona tsono ichipinda muchanza changu chekurudyi. Ndinoona ropa richitanga kudhibha, asi handigoni kunzwa chero chinhu zvachose. Zvinondishungurudza mukati kuti ruoko rwangu rwakafa, asi ini ndinoedza kunyepedzera kunyemwerera. Mukoti anotaura nemudzimai wangu uye anopindura mimwe miniti-yekupedzisira mibvunzo asati aonekana uye abuda mumba. Karavira kwesimbi kunotora pamuromo wangu apo mushonga unotanga kumhanya mutsinga dzangu. IV inoenderera ichidonha apo ini ndakagadzika chigaro changu nekuvhara maziso angu.

Mangwana ichava kudzokorora kwanhasi, uye ndinofanira kushandisa simba rese randinogona kurwisa iyi MS kudzokazve mangwana.

Matt Cavallo murwere ane ruzivo rwekufunga mutungamiri anga anga ari mukurukuri wezve zviitiko zvehutano muUnited States. Iye zvakare munyori uye anga achinyora zvaakasangana nazvo nematambudziko epanyama uye emanzwiro eMS kubvira 2008. Unogona kubatana naye pane ake webhusaiti, Facebook peji, kana Twitter.