Ukuba awuyi kuphuma ebhedeni egcwele amandla, awuyedwa ...
Ngentsasa yabantu abane- multiple sclerosis (MS) ingaba ngumngeni okhethekileyo. Ngelixa abantu abaninzi abangaphezu kweminyaka eyi-9 bebengayi kuzihlukanisa nje ngokuba "ngabantu basasa," abo abane-MS bavame ukuvuswa nge-cornucopia yeempawu ze-MS ezibaphungula kakhulu kunabantu abafuna nje indebe yekofi ukuze baxhamle imini yabo .
Xa uvuka ekuseni, yenza intlupheko encinci yendlela ozivakalelwa ngayo.
Qalisa ifom ephezulu uze usebenze ngendlela yakho. Gcina izandla zakho phezulu ukuze ubone ukuba kukho nayiphi na inyikima . Gxininisa kwiinyawo zakho kunye nemilenze ukuze ubone ukuba i- paresthesia - numbness and tingling - iqalile. Ngeli xesha, unokuphinda uhlalutye umgangatho wakho wokutya okanye " uhlohlo olubi " ukuze ubone ukuba kusasa kusasa. Kakade ke, nawaphi na amawele adibeneyo kufuneka angene ngemvume, ngokunjalo.
Mhlawumbi kusasa kulungile kuwe. Mhlawumbi uqala ngeentloko ezinomzimba kunye nokunyamezela okunye kwe- MS okwangoku , kodwa zonke iimpawu ze-MS zilinde iiyure ezimbalwa ngaphambi kokuba zivele. Ngokuqinisekileyo kusasa lixesha elidla ngokuxinzeleleka , njengezicathulo ezilahlekileyo, ukuphikisana nezingane kunye nokukhawuleza ngenxa yesizathu esithile, esiye siphuthuma inkqubo. Uxinzelelo lwekusasa lunokukwenza ukuba ube neenyawo ezinyaweni , inyaba ukuya kwinqanaba leentlungu zengxaki okanye iingxaki zokungaziqondi kakuhle ezinokubangela ukuba ukhangele into efanayo kwindawo ezili-10 kwiimitha ezi-5, okanye ukulibala into oyenzayo ngaphezulu kwakhona.
Mhlawumbi kusasa kwakho kusetyenziswe ukuzaliswa kwamandla kunye nezicwangciso zomhla. Kaloku ukuba awusekho umntu osasa kudala, unokuziva unesihlungu kakhulu. Ekuseni kunokukwenza ube nomuzwa obuthakathaka okanye ulungelelanise, njengoko unokukhathazeka ngento enokubangela ukuba uphazamise ukulinganisela okuthe tye kwaye uphakamise iimpawu zakho.
Ngaba kulula ukusa kunomhla wakho? Ngaba uziva unqwenela ukuphuma ebhedeni ubuso ngobusuku? Okanye ngaba ungathanda ukutsala iifowuni phezulu kwentloko yakho? La mava ahluke kumntu kumntu. Nazi ezinye izicatshulwa kwizigulane ezifana nawe:
" Emva kokulala embhedeni, kuthatha ixesha elithile, kude kube yinto endiyinyamezelayo imisipha yomlenze. Ngentsasa kunye nobusuku zizinto ezizolileyo. Ndiye ndazisebenzisela kwisigqi kwaye kulungile. Isiqingatha sokuqala sosuku siqinisekisile inxalenye yam engcono. "
"Ngentsasa yam i-HORRIBLE. Ndineemveki ezingama-32 ezikhulelweyo kwaye ndingalali kakuhle ngenxa yokunyanzelana okukhulu kwemilenze yomibini. Ngethuba ndiphuma embhedeni - andinako ukulinganisela, ndinxiba ngamadolo. kwaye ngoko ndidiniwe kakhulu ukuba ndibe nexhala! "
Inja yam inyusela ukuba idle isidlo sakusasa malunga no-5: 30 ekuseni kwaye ndiyathanda - uyandinceda ukuba ndihambe ekuseni.Uqala usuku ngokulula. Ngaphambi kwexesha lixesha lam elona lihle. "
" Ngentsasa ihlala ilungile kum, ndiyicinga ukuba ngumntu osasa, ngelixa umfazi wam engabikho, uThixo uyibusise! Ndivuka kwaye ndenze zonke iisistim zokuhlola. , iipilisi zam sele zinamathuba okukhaba kwaye ndiza ndambatha kwaye ndihamba ngeenja zethu ezimbini. Okwangoku, umfazi wam uyavusa ukuba agule kwaye ahlambe. ukuhamba kunye nomoya omtsha yinto endiyidingayo ukukhahlela ngokusa kwam, emva koko siya kusebenza. Amandla ami kinda ahamba emini, kodwa emva kokuba ndibone umfazi emva komsebenzi ndiziva ndibhetele kwaye ndiyakonwabela ukuhlwa kwam kunye naye bantwana bethu. Ndiyathandaza ukuba ngomso ndiza kuziva kakuhle njengoko ndenze namhlanje! "
"Ekuseni - ndicinga ukuba inxalenye engcono kakhulu yosuku (oko akuthethi nto.) Ndivuka kwaye ndiqale ikhofi yam, thabatha iipilisi zam kwaye ulinde ukubethelwa kwetyala, ezithatha ixesha elide kwaye lide. Umgangatho wam amandla unamandla ngakumbi kusasa. Ngaphakathi kwemini-ntambama ndilala ndihleli kunye neyeza zam. Andiyi kuvumela ukuba ezi zinto zingandinqande ukuba ndiphile.
"Ndiyathuthuzela ukuba ndive ukuba abanye baziva ngendlela endenza ngayo. Ngamanye amaxesha ndiyazibuza ukuba iimpawu zam ukukhathala kunye nenkohlakalo zingqondweni yam kwaye kufuneka ndibenze nzima ukuba ndiphume kuyo, de ndize ndizame ukuhlambuluka kwaye ndinxibe Ngoko ndiba buthathaka kangangokuba andinako ukuma. Ndiyazi ukuba ngaphantsi ndihambisa amaninzi endilahlekileyo. "
"Kwiintsuku ezimbini ezedlulileyo ndandiziva ndivukile xa ndivusiwe." Ndineenkompo zam eziqhelekileyo zekhofi kwaye ndaqala ukufumana 'intloko yam inzima kakhulu ukuba ingabambeli.' Ndadla isidlo sakusasa, ndicinga ukuba kunokunceda uncedo, kodwa Akunjalo, ndahlala phantsi ebhedeni, ndawela phezu kwayo, mhlawumbi ndandingalali. + Ngamanye amaxesha ndize ndingene endlini yokuhlambela ndize ndibe phezu kwetereyiti nje ukuba ndibeke ubuso bam ebusweni obubandayo. imizuzu embalwa emva koko ndivakale ngakumbi. Kungathi kunqabile, kodwa kusebenza. "
"Ndijamelene nobunzima bokulala phakathi kobusuku, ngoko ke ndilala embhedeni emva kokuba indoda yam ishiya ekuseni kwaye ifumane iiyure ezimbalwa zokulala. Kuthatha ixesha elide ukuba ndihambe ngenxa yokuba umva wam uya kuphazamiseka. Ukulinganisela akulungile kwaye kusembi kakhulu xa ndivuka. Emva kwemizuzu engama-30, ukuhamba kwam kuphuculwe, nangona ndisasebenzisa umhambi. "
"Kwafuneka ndivuke kusasa iintsuku ezintathu emva komqolo kwaye ndifumanise ukuba ndibonakala ndisebenza kangcono xa ndivuka ekuseni. Ndiya kuzama oko iintsuku ezimbalwa. Ndihlala umhlalaphantsi ngoko ngokuqhelekileyo akukho ndawo kufuneka ndihambe nayo kusasa. Ezinye izinto endizenzayo ekuseni, ndivavanye ukukwazi kwam ukuqhuba . Ndilahlekelwe ngumsebenzi kumlenze wam kunene, ngoko ngaphambi kokuba ndibuye egalaji Ndiya kuhlola ukuba ndikwazi ukunyathela ngonyawo lwam inqanawa yegesi ukuya kwi Umva wokulahlekelwa ukukwazi ukuqhuba ukuqhuba ngenye yezinto zam ezinkwantya. "
"Ngaba kuyinto evamile ukuvusa phantse yonke intsasa ngeentloko ?"
"Ukuba ndiza kuba neyona nto ndiyibita 'usuku lwebhasi' yesikolo (apho ndivakalelwa kukuba ibhasi yesikolo liqhutyelwe kum kwaye inani lamandla eliza kuthatha ukuze likhange ikhanda lam livumelekile), Ndiya kukwazi ngokukhawuleza ukuba ndivuke. Kule meko andiyi kuvuswa ngokwenene kwelizwi. Ngombulelo, le mihla iphela ngenyanga ngaphandle kokuba ndiphantsi koxinzelelo oluninzi, kukho utshintsho olubalulekileyo Imozulu ngexesha elifutshane, okanye ndinentsholongwane ethile emzimbeni wam owenza ukuba i-MS iqhube phezulu. Ngokuqhelekileyo, andiyena umntu osasa, kodwa ndicinga ukuba ukuqonda ngento engcono kumnandi. Ndiyakwazi ukuzityhumela ngaphandle kombhede ukuze ndiqhubeke nomhla, kwaye ndingayi kuhlala apho, ndixinezelekile kwaye ndididekile, kusasa kusasa.
"Ndiye ndajamelana ne- fibromyalgia , isifo esingapheliyo sokugula kunye ne-epstein Barr Virus engapheliyo, kwaye emva koko, ukuwa kweNtsholongwane kwafunyanwa ukuba ndine-MS.Unyaka ophelileyo ndandijamelana nokukhathala okubi apho ndingakwazi ukuhamba khona. Emva kweentsuku ezi-3 zokuzithatha, ukukhathala kwam kuphuculwe kakhulu, andisayi kuphantsi kokuxhalaka imihla ngemihla, ndisaba lukhuni kodwa mna ndisoloko ndingenako ukukhathala okunjalo , andinako ukuhamba. Ndincoma kakhulu i-Ribose yeVitamin Shoppe kuba ayinayo iswekile. Nabani na ojongene nokukhathala okukhulu kufuneka azame. "
"Ndiyakwazi ukuxelela into yokuqala ekuseni ukuba njani umhla wam uya kuhamba." Ukuba ndivuka 'ngengqondo ebomvu' ndiyazi ukuba kuya kuba ngumhla omde. kufumaneka iiCD zokucamngca ziza kunceda ngokukhathala. Kubonakala kunika umzimba wam ikhefu elincinci ukuze ndifumane lonke ixesha. "
"Ndandisoloko ndingumntu wasentsimini kwaye ndilahlekile! Ngoku ndilele kwaye ndithekile kwaye ndinezikhwebu." Ngamanye amaxesha kuhlala kude kube semini. 4 emini aze athole amandla ekupheleni kosuku! "
"Andizange ndibe ngumntu osasa kusasa." I-MS yam yenza ukuba kusasa kakhulu kunokuba babenjalo. Emva kokuba bebenzela urhulumente wesigqeba iminyaka engama-27, ndandisetyenziselwa ukuvuka nge-5 ntsimbi ekuseni ukusebenza ngoku ngokulala esiya kulala ngethuba elifanayo ndivusa malunga ne-7 ekuseni. Ndiyifumle i-injection yami ekuseni kwaye ndibuyele ndize ndilale kuze kube malunga ne-9 ntsimbi, ndize ndivuke mhlawumbi ngidle isidlo sakusasa okanye ndisele. Iiphunga elincinci.Ndifumana iiyure ezimbalwa ezilungileyo apho ndihlala kakuhle emva kokuhlwa kwasemini. Ngexesha elide ndigqiba umzuzu wam umboniso uqala ukuhamba kwaye ukukhathala kwam kukukhula ngokukhawuleza kwaye ndive nje ndingathandi ukwenza nantoni na. Ndiza kuphumla kude kube ngumzuzu wokutya emva kokutya, ndiza kulungelelanisa ezinye iiyure ezimbalwa zezinto ezikhanyayo. Ndandisoloko ndikwazi ukuhamba yonke imihla, ndivuke ezintlanu ukuya emsebenzini, ndikhwele ibhayisiki, ndenze konke okuzonwabisa izinto ezenziwa ngumntu wonke, kodwa ngelishwa ukuba i-MS ithathe uvuyo lwale mi sebenzi kude nam. Kodwa ubuncinci ndavuka namhlanje - abaninzi abantu abazange bafumane ithuba. "
"Ekuseni kudibana nokuphuma embhedeni kwaye ukhulule umsila wam emlenzeni endleleni eya ezantsi ukufumana indebe yam itiye. Emva kwemizuzu engama-10 ndilungele ukuqala imini yam. Umsebenzi undihamba ndihamba kakhulu kwaye ndifunde ukuhamba, ndiyenza imisebenzi elula kakhulu. Ixesha lokuphumla kunye nokuphindaphinda. Andifane ndiyenze nantoni na ngobusuku ngeliveki yomsebenzi. umzimba kwaye xa undixelela kufuneka uphumle. "
"Ngentsasa xa ndivakalelwa kukuba ngandlela-thile xa ndivuka ndiziva ndidiniwe kwaye nditsho ukuba into enhle njengoko uya kuziva namhlanje.Kodwa imihla yonke ndiyilwela. kusasa kunceda kakhulu emzimbeni nasengqondweni.Iminyaka eyi-25 yokulwa ne-MS ngoku kwaye ngokuqinisekileyo ndiyithatha izilwanyana zam kungekudala. "Mhlawumbi ndiza kuhla, kodwa ndihlahla."
"Eyona nto iminyango ilungile - kukho ukusa kwantoni na ukuba ndivuke ndingakwazi ukuhamba ngenxa yemibandela yokulinganisela. Kodwa iintsuku ezininzi andinakuyenza loo mini nge- Provigil ezimbini . Ndizama ukulwa nomzimba wam kwaye ndinganiki Ngamanye amaxesha andinakukhetha kodwa ukuvumela ukuba umbhede ungithathele kwaye ndilala ngeeyure ezili-10 okanye ezili-12, okanye uthathe i-nap yeeyure ezingama-2 ngosuku. "
"Ukusetyenziswa ukuthanda ubulili kusasa, ngoku ukulala ngesondo kuya kuba mnandi. Ukusebenza nomqeqeshi kwi-gym 2 iiyure ngosuku iintsuku ezi-3 ngeveki zibonakala ziphuculwe kakhulu kwi-elliptical yam imihla yonke ekhaya. Ukuqeqesha imilenze yam kunceda kakhulu.
"Ngokuqhelekileyo ndenza okuhle kakhulu ekuseni kwaye ndingaqhubeka ndiqhube umva." Ngokuhlwa, gcina umfoloko kum, ndiphelile! Ndikhupha ekhaya kwaye ndiwa phantsi kwinqanaba lam phambi kweTV. uyifumene kunye kwaye ndiyakwazi ukuba ndiyicinezela kakhulu ukuba ndiqhubeke. Ngokuqinisekileyo, emva koko umlenze wesigxina ungagqithanga kwaye andinako ukuhlala ndize ndiphumle ngaphandle kokuhambisa imilenze. ndidiniwe yonke imini.Angazi ukuba kutheni.
"Yintoni endikwazi ukuyifumana kukuba ndiyakunikisa kwi- MS okanye ndiyilwe? Xa intombi yam ibuncinane, ndilwa nayo, kodwa ixesha lonke ndivukile, ndandivakala gqitha. U-11: 00 (nangona kunjalo ndivuke ngokucinga kwam okungafaniyo!) Ndibona inkqubo yentshontsho njengendawo 'yongxoworha' kunye nayo yonke imiqondiso yeelomane kunye nemicu emnyama! I-MS yam yenza iintsholongwane zam zenze umsebenzi ogqithiseleyo ukuze ukususela kwinqanaba A ukuya kutsho B, akumangalisi ukuba ndidiniwe! "
"Ukuba ndifumana ubusuku obuhle bokulala, ngokuqhelekileyo ndingaba ngcono.Ukuba ubusuku obunzima bokulala bulibale, kuya kuthatha amahora ama-3 ukuba ndikhuthazeke. kunceda, kodwa ngubani na owaziyo? Ndicinga ukuba ndiyaphanga. "
"Ngethuba lokusa ekuseni ndiyona nto ibhetele kum, nangona ndivuka ndikhathele, yimizuzu kuphela yosuku endikwazi ukwenza ngayo. Ngokuqhelekileyo, phakathi 'kweeyure ezimbalwa' iiyure ezimbalwa ndizenzile lonke usuku Andizange ndifumane ukuphumla ebusuku ngokuzeleyo kwaye ndivuke ngokuphindaphindiweyo ukuba ndilale. + Imilenze yam kunye ne-back back ngenxa yokwelula ngokukhawuleza kunzima ngokwaneleyo. + Andiyi kulala kodwa ndibeka phantsi ukuze ndifunde ndibukele iTV. imini 'ilungile,' kodwa ndiqhubeka ndifunda ukumodareyitha yintloko kunye nisoloko nizama ukugcina amandla amancinci ngokungalindelekanga. "
"Ukusa kwam kusasa ukuqala, i-7:30 ikhofi kunye neengcamango kwaye ukuba ndikwazi ukuthenga i-Provigil, ngeyure ndihamba. Ndiza kufezekisa izinto ezimbalwa ngaphambi kokuba ndifune ukuphumla nokuphinda ndiphinde, emva kwemini emva kokuba ndiphumle. Emva kokuphumla iiyure ezimbalwa (kungekhona ukulala, izihlunu zam zifuna nje ukulala) enye idolose ye caffeine kunye neengxaki zentlungu kwaye ndiqhele Ndineeyure enye okanye loo mveliso. I-Pacing yona yinto engundoqo, ihamba ngokukhawuleza kwaye iphumelele. "
Ndandithiyile ngokusa, ndithi, "Ndiyayithiya iminyango." Ndiyifumene ukuba iinyawo zam ziba nzima kakhulu ebusuku, xa ndiphuma ebhedeni ndibeka iinyawo zam emanzini ukuba zime intlungu enamazinyo. Ndihamba ngeenxa zonke ukuze ndifike kwiindawo ezinjengokuhlambela, zivule iimfama kwaye uhambe ubeke i-kettle. Ndivakalelwa kukuba inyawo zam zizinambuzane kwaye zihamba ngekhonkrithi. "
"Emva koko ndifumene intloko ephuma kwintlanzi ukuya kwinqanaba lokuba ndigula. Uninzi lwentsasa yam isetyenziswa ngamandla amaninzi kwaye izicwangciso zam imini zibonakala ziphela. Umhla apho ndiyisela khona ikhofi.Ndikhangele ngefasitela ukuze ndikhangele imozulu, ndibuze ukuba kulungile ukuba uhambe ngaphandle. Emva koko ndihleli esihlalweni sokutya esidlweni sakusasa kwaye ingcamango yokuya ngaphandle iphela. silungele enye ubuthongo ngo-11: 00. "
Kuyamangalisa ukuva bonke abantu abaye baziva oko ndivakalelwa kukuba ndihlala ndixelelwa ukuba andisayi kusebenziseka ngokwaneleyo okanye kufuneka ndilahle umthamo kwaye i-neurologist isoloko iqhube i-apnea yokulala ngenxa yenkcazo yokukhathala kwam. Ngomso zixesha lam elona lihle - ngokuqhelekileyo ngoMvulo kwaye mhlawumbi ngoLwesibili.Yonke imihla ihla, kwaye ubusuku ndiyinto engabalulekanga. Ngalo lonke iveki yintlekele - i-headaches rhoqo, i-nausea ukuya kwindawo yokuphosa kwaye ndivakalelwa nje Andikwazi ukugcina amehlo amvulekileyo . I- Provigil ayenzanga nto. Iofisi endisebenza kuyo ifuna ukugcina ukushisa okungenani ama-degrees angama-72 kwaye ndinokubandezeleka okukhulu kokushisa. Ndixhalabile kuba akukho mntu ubonakala efumana kwaye Ndaphinda ndibe neentsuku ezintle. Ndiyinto ekhethekileyo ehlobo. "
"Ngomso kum, ndona nto iyona nto ibhetele. Into yokuqala: Ukulinganisela kwam kukubonakalisa okokuqala kwaye ukukhathala okukhulu. Ndizame ukuzondla ngokwam, ukwenzela ukuba iinyanga zangekho ezimbi kodwa ndiphelile nje ukuba ndifezeke ngenxa yokuba emva kweentsuku ezingama-4 okanye ii-5 ndenza. "U
"Awufuni ukuphazamisa abafana, kodwa ukusa kwam kusasa kufana nobusuku obusongelayo. Emva kokulala ubusuku obuphazamisayo, ndivuka xa ndivakalelwa, oko kuthatha iiyure ukuphakamisa. kunye nokusela ezininzi iikomityi zekhofi, ndizulazula kwaye ndisele, ndisahlala kuma-70 ekhulwini. Ndiyadinga i-nap yamandla emva kwemini, ngoko ke ndiziva ndikhululekile.
"Ndiyathanda iminyango kuba ndiyaphinda ndivuke, kodwa ukuphuma ebhedeni kuqala 'idwala lami elikhuphukayo.' Ndicinga ukuba enye yezona zinto zinzima kakhulu kumhla. Ndandidla ukuhamba ndize ndizele amandla, kodwa ngoku kuvuka kufana nomvavanyo endikulungeleyo kodwa ndibe ndikhusele. "
"Ngomso kudla ixesha elihle xa ndivuka ndize ndibe nemithwalo yam, ndijongana ne-vertigo kwakhona. Iindonga zingumhlobo wam kusasa kuba mna, njengamaninzi kuni, nibhekana nemiba yeemisipha kunye nemibandela ye-balance / gait ' Ngentsimi enkulu kakhulu, ukuba ndiyakwazi ukuphuma kuloo 'fog,' kusasa kwam ekuseni. Umhla ulungile kakhulu, ndiyinqabe ukuthetha, kodwa inene yinto enokuthi ithathe ngamanye amaxesha kuthathe iiyure ukuphuma, kwaye andinakuyisela iminyaka engaphezu kwe-20! kunye ne-massage feature - iye yanceda abanye, kodwa ukulala kuhlale kuyinkxalabo.Izihlandlo ezininzi xa ndiza kulala ndixesha lokuvuka. Uncedo olunjalo lokubona nokuqonda ukuba amanye ama-MSers ahamba kwiimeko ezifanayo. endikufumene ngayo izandla zam ziphantse zivalelwe kwiindawo ezivela ebusuku kwaye zithatha ixesha elide ukuba zikhulule. "
Ngaphantsi
Kubonakala ngathi baninzi bethu baneengxaki ezinokuhamba ekuseni, kwaye xa senza njalo, sihlala sinamagunya amancinci emini. Kubalulekile ukugcina amanqanaba akho wamandla, ukwenzela ukuba unako xa kunokwenzeka isicwangciso ngokufanelekileyo, xa kunokwenzeka.
Ukuba ulawulwa kwishedyuli yakho kunye nomthwalo wokusebenza, yenza izinto ezifuna amandla amaninzi kunye namandla obuchopho ngexesha lakho lokusebenza eliphezulu kwaye wenze izinto ezingaphezulu kwexesha xa ubuchopho bakho buphezu kwe-autopilot. Nangona ungenalo mda wokulawula, zama ukunyamezela kunye nawe ngexesha lamaxesha aphantsi kwamandla.