Usuku kubomi be-MS babuya kwakhona

Umxholo

• 5:00 kusasa
• Ngo-6: 15 kusasa.
• Ngo-6: 17 kusasa.
• Ngo-6: 20 kusasa.
• Ngo-6: 23 kusasa
• 11:30 kusasa
• 12:15 pm
• 2:30 pm
• Ngo-9: 30 ebusuku.
• Ngo-9: 40 emva kwemini.

Ndafunyaniswa ndinokuphinda ndibuyele esikhungweni se-multiple sclerosis (RRMS) ngo-2005, ndineminyaka engama-28 ubudala. Ukusukela ngoko, ndiye ndanamava okuba kukukhubazeka ukusuka esinqeni ukuya ezantsi ndingaboni emehlweni kwiliso lasekunene nokuba ndilahlekelwe yingqondo ngokungafaniyo nabokuqala. Ukuqala kwe-Alzheimer's. Ndikhe ndanomngxunya wesibeleko kwaye, kutsha nje, ukubuyela umva apho ndikhubazeke khona kwicala lasekunene lomzimba wam.

Ukubuyela kwam kwakhona kwi-MS konke kuye kwaba neziphumo ezahlukeneyo ezimfutshane kunye nezexesha elide ebomini bam. Ndibe nethamsanqa lokufumana ukuxolelwa emva kokuphinda ubuye, nangona kunjalo, kukho iziphumo ebezingalindelekanga ezihlala zihlala zihlala nam yonke imihla. Ukuphinda ndibuyele mva nje kundishiye ndiphindaphindeka ndindisholo kwaye ndibetheka kwicala lasekunene, kunye neminye imiba yokuqonda.

Yile nto usuku oluqhelekileyo olujongeka ngayo kum xa ndifumana ukuphinda ndibuyele kwi-MS.

5:00 kusasa

Ndilele ebhedini, andinakuphumla kwaye ndibanjwe phakathi kokuvuka kunye namaphupha. Khange ndilale ubusuku bonke ngaphezulu kwemizuzu engama-20 okanye engama-30 ngexesha. Intamo yam iqina kwaye ibuhlungu. Bathi i-MS ayinazintlungu. Xelela loo nto kwisilonda sam somqolo esidumbileyo, ndicinezela iplate ye-titanium entanyeni yam. Ngalo lonke ixesha ndicinga ukuba i-MS flare ups iphaya emva kwam, boom, zikhona kwakhona. Lo uyaqala ukubamba.

Kufuneka ndichame. Kuye kwafuneka ukuba umzuzwana. Ukuba kuphela iAAA ingathumela itrakhi yokutsala ukuba indikhuphe ebhedini, mhlawumbi ndingayinyamekela.

Ngo-6: 15 kusasa.

Isandi sesivusi sothusa umfazi wam oleleyo. Ndibuyile emqolo kuba leyo kuphela kwendawo endinokufumana intuthuzelo yomzuzwana kuyo. Ulusu lwam luyarhawuzelela ngokunganyamezelekiyo. Ndiyazi ukuba ziziphetho zemithambo-luvo ezingafakwanga kakuhle, kodwa andinakuyeka ukunwaya. Kusafuneka ndichame, kodwa khange ndikwazi ukuphakama okwangoku. Umfazi wam uyaphakama, eze ecaleni kwam ebhedini, aze aphakamise umlenze wam onzima, onzima wasekunene ebhedini awuse phantsi. Andikwazi kushukuma okanye ndive ingalo yam yasekunene, ke kuya kufuneka ndimjonge njengoko azama ukunditsalela endaweni yokuhlala, apho ndinokujikisa khona icala lam lasekhohlo eliqhelekileyo elisebenzayo. Kunzima ukuphulukana noluvo lokuchukumisa. Ndiyazibuza ukuba ndakuze ndiphinde ndiyive loo mvakalelo?

Ngo-6: 17 kusasa.

Umfazi wam utsala intsalela yam ukuya kwiinyawo zam kwindawo yokuhlala. Ukusuka apha, ndiyakwazi ukuhamba, kodwa ndinenyawo ngasekunene. Oko kuthetha ukuba ndiyakwazi ukuhamba, kodwa kujongeka ngathi zi-zombie limp. Andizithembi ukuba ndizokuchama ndime, ndiye ndahlala phantsi. Ndindindisholo kancinci kwisebe lemibhobho yamanzi, ngoko ke ndilinde ukuva iidrubbles zihlabe amanzi yangasese. Ndigqibezela, ndigungxule, kwaye ndisebenzise indawo yokuthambisa yangasese ngasekhohlo ukuze ndizikhuphe kwindlu yangasese.

Ngo-6: 20 kusasa.

Icebo lokulawula ukuphinda ubuye kwi-MS kukwandisa ixesha olichitha kwisithuba ngasinye. Ndiyazi ukuba xa ndiphuma kwigumbi lokuhlambela, kuya kuthatha ixesha elide ngaphambi kokuba ndibuye kwakhona. Ndiqala amanzi eshaweni, ndicinga ukuba mhlawumbi ishawa yomphunga iya kwenza iintlungu entanyeni yam zive ngcono. Ndithatha isigqibo sokuxubha amazinyo ngelixa amanzi eshushu. Ingxaki kukuba andikwazi ukuwuvala ngokupheleleyo umlomo wam kwicala lasekunene, ngoko ke kufuneka ndoyame phezu kwesinki njengoko intlama yamazinyo ikhupha emlonyeni wam ngesantya esinefeni.

Ngo-6: 23 kusasa

Ndigqibezela ukuxubha kunye nokusebenzisa isandla sam sasekhohlo ukuzama ukukha amanzi emlonyeni wam ngokusisigxina ukuze ndihlambe. Ndibiza umfazi wam ukuba andincede kwakhona kwisigaba esilandelayo senkqubo yam yasekuseni. Ufika kwigumbi lokuhlambela andincedise ukuphuma kweT-shirt ndingene nakwishower. Undithengele ilokhwe ngentonga kunye nokuvasa umzimba, kodwa ndisafuna uncedo lwakhe ukuze ndicoceke ngokupheleleyo. Emva kokuhlamba, uyandinceda ukuba ndomiswe, ndinxibe, kwaye ndiphume ndiye kwigumbi lokuhlala kwisithuba esaneleyo sokuvalelisa abantwana ngaphambi kokuba baye esikolweni.

11:30 kusasa

Bendihleli kule recliner ukusukela ekuseni. Ndiyasebenza ekhaya, kodwa ndithintelwe kakhulu ngokokusebenza endinokukwenza ngoku. Andikwazi ukusebenzisa isandla sam sasekunene ukuchwetheza konke konke. Ndizama ukuchwetheza ngesandla esinye, kodwa isandla sam sasekhohlo kubonakala ngathi ndilibale ukuba ndenzeni ngaphandle kwesandla sasekunene. Kuyaphazamisa ngobuhlanya.

12:15 pm

Ayisiyo kuphela ingxaki yomsebenzi wam. Umphathi wam uhlala enditsalela umnxeba endixelela ukuba ndiyayeka izinto ziwe ngeentanda. Ndizama ukuzikhusela, kodwa unyanisile. Inkumbulo yam yexesha elifutshane iyasilela kum. Iingxaki zememori zezona zimbi. Abantu banokubona ukusikelwa umda komzimba ngoku, kodwa hayi inkungu yengqondo ethatha umthwalo kum ngokuqonda.

Ndilambile, kodwa andinaso nesizathu sokutya okanye ukusela. Andikhumbuli nokuba bendinesidlo sakusasa namhlanje okanye.

2:30 pm

Abantwana bam bafika ekhaya bevela esikolweni. Ndisesegumbini lokuhlala, esitulweni sam, kanye apho ndandikhona xa bemka ngale ntsasa. Banenkxalabo ngam, kodwa - kwiminyaka yethenda yeminyaka emi-6 neli-8 ubudala-abazi ukuba mabathini. Kwiinyanga ezimbalwa ezidlulileyo, bendiqeqesha amaqela abo ebhola ekhatywayo. Ngoku, ndibambekile kwisimo semi-vegetative ubuninzi bemini. Umntwana wam oneminyaka emi-6 ubudala uyandanga kwaye uhlala ethangeni lam. Uhlala enento eninzi ayithethayo. Hayi namhlanje, nangona kunjalo. Sithe cwaka sibukele iikhathuni kunye.

Ngo-9: 30 ebusuku.

Umongikazi wezempilo wasekhaya ufika endlwini. Impilo yasekhaya lolona khetho lwam kuphela lokufumana unyango kuba andikho kwimeko yokuphuma endlwini ngoku. Kwangoko, bazamile ukundicwangcisela ingomso, kodwa ndabaxelela ukuba kubalulekile ukuba ndiqale unyango lwam ngokukhawuleza. Eyona nto iphambili ekufuneka ndiyenzile kukwenza nantoni na endinokuyenza ukuze ndibuyisele le MS kwi-cage yayo. Akukho ndlela ndiza kulinda ngayo ngenye imini.

Oku kuyakuba kukungeniswa kweentsuku ezintlanu. Umongikazi uza kuyimisa ngokuhlwanje, kodwa inkosikazi yam kuya kufuneka itshintshe iibhegi ze-IV kwiintsuku ezine ezizayo. Oku kuthetha ukuba kuyakufuneka ndilale ngenaliti ye-IV ebambeke nzulu emthanjeni wam.

Ngo-9: 40 emva kwemini.

Ndijonge inaliti ingena kwingalo yam yasekunene. Ndibona igazi liqala ukudada, kodwa andiva nto kwaphela. Kuyandikhathaza ngaphakathi ukuba ingalo yam ityhafile, kodwa ndiyazama ukubonisa uncumo. Umongikazi uthetha nomfazi wam aze aphendule imibuzo ngomzuzu wokugqibela ngaphambi kokuba athi ndlela-ntle aphume endlini. Incasa yesinyithi ithatha umlomo wam njengoko iyeza liqala ukubaleka ngemithambo yam. I-IV iyaqhubeka nokuthontsiza njengoko ndihleli esihlalweni sam kwaye ndivale amehlo.

Ngomso kuya kuba yinto ephindaphindayo yanamhlanje, kwaye kufuneka ndibambe onke amandla endinokuwafumana ukuze ndilwe nale MS iphinda ibuye kwakhona ngomso.

UMatt Cavallo ngamava esigulana inkokeli yokucinga ebesisithethi esiphambili kwimicimbi yezempilo eUnited States. Ukwangumbhali kwaye ebhala amava akhe ngemiceli mngeni yomzimba kunye neemvakalelo ze-MS ukusukela ngo-2008. iwebhusayithi, Facebook iphepha, okanye Twitter.