Tsiku Mmoyo wa MS Kubwereranso

Zamkati

• 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 madzulo
• 2:30 p.m.
• 9:30 madzulo
• 9:40 madzulo

Anandipeza ndikubwezeretsanso matenda a sclerosis (RRMS) mu 2005, ndili ndi zaka 28. Kuyambira pamenepo, ndakhala ndikumva momwe zimakhalira kukhala wolumala kuyambira mchiuno mpaka kumaso kwakumaso ndikumva kuzindikirika mosiyana ndi koyambirira kuyamba Alzheimer's. Ndakhalanso ndi chiberekero cha khomo lachiberekero ndipo, posachedwa, ndinabwereranso komwe ndinapuwala mbali yonse yakumanja ya thupi langa.

Kubwereranso kwanga kwa MS kwakhala ndi zotsatirapo zazifupi komanso zazitali pamoyo wanga. Ndakhala ndi mwayi wokhala ndi chikhululukiro ndikayambiranso, komabe, pali zovuta zina zomwe ndimakhala nazo tsiku lililonse. Kubwereranso kwanga kwaposachedwa kwambiri kwandisiyira dzanzi lobwerezabwereza ndikumenyetsa kumanja kwanga, komanso zovuta zina.

Izi ndi zomwe tsiku lililonse limayang'ana ngati ndikukumana ndi MS.

5:00 a.m.

Ndagona pabedi, ndikupumula ndikugwidwa pakati pa kudzuka ndi maloto. Sindinagone usiku wonse kwa mphindi zoposa 20 kapena 30 nthawi imodzi. Khosi langa ndi lolimba komanso lowawa. Amati MS alibe zopweteka. Ndiuzeni zotupa zanga zotupa zamtsempha, ndikukanikiza mbale ya titaniyamu m'khosi mwanga. Nthawi iliyonse ndikaganiza kuti ma MS flare ups ali kumbuyo kwanga, boom, kumeneko amakhalanso. Uyu akuyamba kugwira.

Ndiyenera kutema. Ndatero kwa kanthawi. Ndikadakhala kuti AAA itha kutumiza galimoto kuti andikokere pabedi, ndiye kuti mwina nditha kuzisamalira.

6:15 a.m.

Kulira kwa alamu kudabwitsa mkazi wanga akugona. Ndili kumbuyo kwanga chifukwa ndi malo okhawo omwe ndingapeze chitonthozo kwakanthawi. Khungu langa lachita kuyabwa kwambiri. Ndikudziwa ndikumapeto kwa misempha, koma sindingathe kukanda. Ndiyenerabe kutchipa, koma sindinathe kuyimabe. Mkazi wanga amadzuka, nadza mbali ya bedi langa, ndikukweza mwendo wanga wamanja wofooka, wolemera kuchoka pabedi nkulowa pansi. Sindingathe kusuntha kapena kumva dzanja langa lamanja, chifukwa chake ndiyenera kumuyang'ana pamene akuyesera kundikoka kuti ndikhale pansi, pomwe ndimatha kugwedeza mbali yanga yakumanzere yomwe ndimagwira bwino. Ndizovuta kutaya kumva kwakukhudzidwa. Ndikuganiza ngati ndidzadziwitsenso kumverako?

6:17 a.m.

Mkazi wanga amakoka zotsalira za ine mpaka kumapazi anga kuchokera pomwe ndakhala. Kuchokera pano, ndikutha kusuntha, koma ndatsika phazi kumanja. Izi zikutanthauza kuti ndimatha kuyenda, koma zikuwoneka ngati zombie limp. Sindikudzidalira kuti ndizikoka ndikuyimirira, choncho ndimakhala pansi. Inenso ndachita dzanzi pang'ono mu dipatimenti yoyikira mapaipi, choncho ndikudikirira kuti ndimve zopukutira zikumwaza madzi achimbudzi. Ndimatsiriza, kusamba, ndikugwiritsa ntchito kauntala yopanda pake yakumanzere kuti ndizinyamulire kuchimbudzi.

6:20 a.m.

Chinyengo chothandizira kuyambiranso kwa MS ndikuchulukitsa nthawi yomwe mumagwiritsa ntchito danga lililonse. Ndikudziwa kuti ndikachoka kubafa, ndidzatenga nthawi kuti ndibwererenso. Ndimayambitsa madzi osamba, ndikuganiza kuti mwina kusamba kotentha kumapangitsa kupweteka kwa khosi kwanga kumveke bwino. Ndasankhanso kutsuka mano pamene madzi akutentha. Vuto ndiloti sindingathe kutseka pakamwa panga kumbali yakumanja, kotero ndiyenera kutsamira pasinki pamene mankhwala otsukira mano akutuluka mkamwa mwanga mothamanga.

6:23 a.m.

Ndikumaliza kutsuka ndikugwiritsa ntchito dzanja langa lamanzere kuyesa kutunga madzi mkamwa mwanga kuti nditsuke. Ndikuyitanitsa mkazi wanga kuti andithandizenso gawo lotsatira la machitidwe anga m'mawa. Amabwera kubafa ndikundithandiza kutuluka mu T-sheti yanga ndikukasamba. Adandigulira loofah pamtengo ndikutsuka thupi, komabe ndimafunikira thandizo lake kuti ndikhale waukhondo. Nditatha kusamba, amandithandiza kuti ndiumitse, kuvala, ndikupita kuchipinda chochezera munthawi yokwanira kutsanzikana ndi ana asanapite kusukulu.

11:30 a.m.

Ndakhala mchipindachi kuyambira m'mawa. Ndimagwira ntchito kunyumba, koma ndili ndi malire ochepa pantchito zantchito zomwe ndingagwire panopo. Sindingagwiritse ntchito dzanja langa lamanja kutayipa konse. Ndimayesera kutayipa ndi dzanja limodzi, koma dzanja langa lamanzere likuwoneka kuti laiwala choti ndichite popanda dzanja lamanja limodzi. Ndizokhumudwitsa mopenga.

12:15 madzulo

Limenelo si vuto langa lokhalo pantchito. Abwana anga amangokhalira kundiimbira foni kundiuza kuti ndikulola zinthu kugwa ming'alu. Ndimayesetsa kudziteteza, koma akunena zoona. Kukumbukira kwanga kwakanthawi kukulephera. Mavuto okumbukira ndiwovuta kwambiri. Anthu amatha kuwona zofooka zanga pompano, koma osati utsi wamaubongo womwe umandivuta mozindikira.

Ndili ndi njala, komanso ndilibe chilimbikitso chodya kapena kumwa. Sindingathe ngakhale kukumbukira ngati ndadya chakudya cham'mawa lero kapena ayi.

2:30 p.m.

Ana anga amafika kunyumba kuchokera kusukulu. Ndikadali pabalaza, pampando wanga, pomwe ndidali pomwe adanyamuka m'mawa uno. Amakhudzidwa ndi ine, koma - azaka zapakati pa 6 ndi 8 - sakudziwa choti anene. Miyezi ingapo yapitayo, ndinali kuphunzitsa matimu awo ampira. Tsopano, ndakhala m'malo osadya masamba nthawi yayitali. Mwana wanga wazaka 6 amakumbatira ndikukhala pamiyendo yanga. Nthawi zambiri amakhala ndi zambiri zoti anene. Osati lero, komabe. Timangoyang'ana mwakachetechete zojambula pamodzi.

9:30 madzulo

Namwino wathanzi kunyumba amabwera kunyumba. Thanzi lakunyumba ndiye njira yanga yokhayo yothandizira kulandira chithandizo chifukwa sindingathe kutuluka pompano. M'mbuyomu, adayesanso kundisinthiratu mawa, koma ndidawauza kuti ndikofunikira kuti ndiyambe chithandizo changa mwachangu. Cholinga changa chokha ndikuchita chilichonse chomwe ndingathe kuti ndibwezeretse MS mu khola lake. Palibe njira yoti ndidikire tsiku lina.

Uwu ukhala kulowetsedwa kwamasiku asanu. Namwino azikhazikitsa usikuuno, koma mkazi wanga ayenera kusintha matumba a IV masiku anayi otsatira. Izi zikutanthauza kuti ndiyenera kugona ndi singano ya IV yomata mkati mwanga.

9:40 madzulo

Ndimayang'ana singano ikulowa m'manja mwanga. Ndikuwona magazi akuyamba kuphulika, koma sindimamva kalikonse. Zimandipweteka mkati mwanga kuti mkono wanga ndi wonenepa, koma ndimayesa kudzionetsera ngati ndikumwetulira. Namwino amalankhula ndi mkazi wanga ndikuyankha mafunso omaliza asanatsanzikane ndikutuluka mnyumbamo. Chakudya chachitsulo chimatenga pakamwa panga pamene mankhwala amayamba kuthamanga kupyola mitsempha yanga. IV imapitirizabe kudontha pamene ndikukhala pampando wanga ndikutseka maso anga.

Mawa ndibwereza lero, ndipo ndiyenera kugwiritsa ntchito mphamvu zonse zomwe ndingathe kulimbana ndi MS ndikubwereranso mawa.

Matt Cavallo ndi mtsogoleri wazidziwitso wodwala yemwe wakhala wokamba nkhani pachipatala ku United States. Ndiwonso wolemba ndipo wakhala akulemba zokumana nazo zawo ndi zovuta zamthupi komanso zamaganizidwe a MS kuyambira 2008. Mutha kulumikizana naye pa tsamba la webusayiti, Facebook tsamba, kapena Twitter.