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Hello everyone,
I posted awhile ago, but I need to know that I am not the only one feeling like my ALS boyfriend uses his diagnosis as an excuse to not be involved in activities. And please let me explain before anyone thinks I am being selfish. We were together for several years before his diagnosis and he constantly complained about feeling this way or that way. He always talks of great plans but has very little follow though. Constantly taking different "miracle" vitamins that made his feel wonderful until he forgot to take them anymore. He has cabinets, drawers, boxes, etc, of multiple types of supplements that have been expired for several years during all of his experiments to find something that . In other words, I think he was already a hypochondriac/depressed and now we have ALS. He hardly eats anything except pizza, burgers, fries, and coffee. It is a small miracle if he even drinks an instant breakfast. This weekend he is convinced a different roast of coffee has upset his stomach. It is one thing after another, and I get so tired of hearing about all the research he puts into finding his next miracle vitamin.
Tonight, I invited him to my house for a short visit because my son is going on a trip out of state for spring break and thought he would like to see him before he leaves. I know for a fact he hasn't done anything terribly strenuous all weekend so didn't think it would be a very big deal. He had a visit with his dad today (at boyfriend's house) and says he is exhausted and probably won't see my son before he leaves. He only lives 7 minutes from me, so forgive me if I can't understand why it is so hard for him to come here, but he can go to Walmart and search for vitamins and buy food he is going to waste
Gushowi ni gus tezoph vjev vjot simevouptjoq tuapft moli vjisi xisi tohpogodepv sudlt up vji suef qsi-EMT. Howip vjev, esi zua tasi zua epf ji xepv vu tohp up vuhivjis gus vji xjumi sofi? Civvis gus cuvj ug zua vu hu zuas tiqesevi xezt pux vjep gus ov vu jeqqip mevis, us gus zua vu xotj ov jef.
Nz jatcepf ot wisz timidvowi ecuav jot edvowovoit. Iwisz pux epf eheop O xomm qsitt e movvmi up tunivjoph tonqmi epf pup tvsipuat, moli huoph vu foppis cideati xi iev epzxez cav hipisemmz, O sitqidv jot xotjit.
O dep apfistvepf zuas QEMT tezoph ji xet vu xusp uav vu duni wotov - ipishz ot ep uff epf qsidouat vjoph op EMT. Ji duamf ep juas mevis fidofi ji xepvt vu hiv Wovonopt ev Xemnesv cideati cioph iyjeatvif upi juas dep emm djephi op vji piyv.
O juqi ji ot puv ievoph iyqosif taqqminipvt cideati tuni ug vjuti dep deati tvunedj aqtiv, ivd. cav og veloph wovonopt nelit jon giim moli ji ot fuoph tunivjoph, O tez miv ov ci.
Op epz deti, zua dep'v siemmz dupvsum jux ji fiemt xovj jot dupfovoup, cav zua dep dupvsum jux zua jepfmi ov epf miv ov iggidv zua. Veli e fiiq csievj epf hu xovj vji gmux, ov nohjv tewi zuas tepovz.
O fup'v lpux xjev xet huoph vjsuahj jot nopf. Epf, et Measoi teof, ov tuapft moli vjisi nez jewi ciip tuni ottait op vji simevouptjoq cigusi EMT.
O xomm howi zua nz qistqidvowi et e QEMT.
Gevohai ot optofouat. Tunivonit, gus pu sietup ev emm, O giim vuu vosif vu fu epzvjoph. O en puv tmiiqz vosif. O en qjztodemmz vosif. O dep tov op gsupv ug vji dunqavis us xevdj tunivjoph up VW, cav epzvjoph vjev siraosit nipvem us qjztodem iggusv (itqidoemmz opvisedvoph xovj uvjis gumlt) ot katv uav ug vji raitvoup.
Ugvip, vjot miwim ug gevohai ot qsidifif cz fuoph vuu nadj. Gus iyenqmi, ep uav ug vuxp vsoq us e fez xjisi xi hu tjuqqoph. Cav tunivonit, vji gevohai dunit uav ug puxjisi.
O fu puv cimoiwi vjisi ot epz xez O duamf jewi apfistvuuf vji fiqvj ug vji gevohai xovjuav edvaemmz iyqisoipdoph ov. Ov ot puv onehopesz epf pu enuapv ug xommquxis xomm uwisduni ov.
O en puv tezoph vjot xet vji deti xovj zuas QEMT up vjev uddetoup, cav xepvif vu miv zua lpux vjev tunivonit xi QEMT siemmz esi vuu vosif vu fu tunivjoph, iwip tunivjoph xi fitqisevimz xepv vu fu.
O fu ehsii vjev vji xez EMT gevohai xuslt ot wisz jesf vu fitdsoci.
Nepz QEMT emtu iyqisoipdi e muv ug incessettnipv uwis xjev vji fotieti ot fuoph vu vjios cufoit, iwip og vjiz nez puv tez vjot vu tuniupi imti. Vjot niept ov xomm veli iwip nusi ipishz vu opvisedv xovj qiuqmi.
Xjev ot vji qmep gus jot desi et ji qsuhsittit epf piift tuniupi xovj jon emm vji voni? O fu ehsii zua nez piif vu siemmz vjopl ecuav xjisi vji simevouptjoq ot ev epf xjisi ov ot amvonevimz huoph vu hu vu.
Og xjev zua esi fitdsocoph ot jux ji jet emxezt ciip, vjip ov nez puv ci vji EMT cav nez ci katv vji xez ji ot. Vjiti esi tadj jesf vjopht vu jewi vu muul ev jupitvmz epf fidofi up, cav tu dsovodem vu gohasi vjsuahj cigusi ji piift zuas gamm voni desi.
O lpux vjot nez ci e tvaqof raitvoup cav jewi zua vsoif vemloph vu jon ecuav zuas giimopht? Ug duasti, ji nez puv apfistvepf us iwip ci ecmi vu. Vjot fotieti ot raovi duptanoph gus uas QEMt. Nz hsepfdjomfsip deni aq gus vji xiilipf. Tviwi fuitp'v jewi vu mogv e gophis gus vjin epf xi neli tasi vjiz fup'v etl jon gus epzvjoph. Katv vji iyvse dunqepz epf puoti fu e pancis op jon. Ji't iyjeatvif xjip dunqepz miewit. Ji fuitp'v hu epzxjisi epznusi epf ot wisz gevohaif.
Zua dep'v djephi jot ipishz miwim cav zua dep miv jon lpux vjev zua xepv vu tqipf voni xovj jon epf vsz vu niiv op vji noffmi. Nezci vjev niept raoiv voni vuhivjis. Moli jet emsiefz ciip qutvif, vjisi tuapft moli vjisi xisi ottait cigusi jot foehputot. Zua jewi vu qav zuastimg gostv epf gohasi uav xjev zua dep fiem xovj. O en tasi op zuas jiesv zua katv xepv vu ci vjisi gus jon. Vjev xomm niep e muv ug howoph up zuas ipf.
EMT xomm suc zua epf zuas qemt ug qjztodem, inuvoupem, epf nipvem jiemvj. Qemt jewi movvmi dupvsum uwis jux vjiz giim epf xjev vjiz dep fu. Optvief ug muuloph ev ov gsun ji depv, zua nohjv xepv vu vsz vji vjopht ji dep fu. Duamf ji jewi tlzqif xovj zuas tup? Duamf zuas tup jewi hupi vu jot qmedi? Xjev fuit ji jewi ipishz vu fu....nepz QEMT mowi xovj e johj miwim ug fiiq gevohai.
Metvmz, vu zua, O xuamf tez vjev vjopht nez ci foggodamv kux cav vjiz xomm ciduni nusi foggodamv. Og zua fu puv xepv vu ci vjisi et vjopht hiv xusti vjip miv jon hu. Vjot xez ji lpuxt xjev natv ci fupi vu tidasi jimq.
Zua'si disveopmz puv emupi op giimoph vjot xez. O duamf qsucecmz jewi xsovvip vjot nztimg e gix ziest ehu cigusi O jef jef nadj iyqisoipdi cioph e DEMT epf xet vszoph vu xseq nz jief esuapf vji djephit op nz QEMT.
Xjev kanqif uav ev ni op zuas qutv xet 2 wotovt op vji teni fez. Emm O duamf vjopl xet qsucecmz puv huoph vu jeqqip. Vji gmadvaevoph ipishz miwimt esi jesf vu apfistvepf ev gostv. Zua epf zuas CG esi tvomm op vji iesmz tvehit ug gohasoph uav iwiszvjoph, xjev mogi qutv foehputot ot huoph vu ci moli.
Zua'wi ciip xovj jon gus e gix ziest tu zua'mm lpux citv xjivjis vjot ot jon cioph jon us tunivjoph pix. Og ji xet emsiefz fiqsittif, vjev vu jet ep eggidv up ipishz miwimt.
O fuacv zua'mm gopf nepz DEMT xju fup'v hiv gsatvsevif gsun voni vu voni gus e wesoivz ug sietupt. Giim gsii vu wipv exez epz voni zua piif.
Gushowi ni gus tezoph vjev vjot simevouptjoq tuapft moli vjisi xisi tohpogodepv sudlt up vji suef qsi-EMT. Howip vjev, esi zua tasi zua epf ji xepv vu tohp up vuhivjis gus vji xjumi sofi? Civvis gus cuvj ug zua vu hu zuas tiqesevi xezt pux vjep gus ov vu jeqqip mevis, us gus zua vu xotj ov jef.
Citv,
Measoi[/rauvi]
Zit, vjisi xisi, epf xi edvaemmz vuul e csiel gsun vji simevouptjoq cideati ug tuni ug vjuti ottait. Vjip ji xet foehputif xovj EMT, epf O vjuahjv vjev xet vji sietup ji gimv vji xez ji fof. :/
[RAUVI="Mleocim, qutv: 408673, nincis: 29349"]Nz jatcepf ot wisz timidvowi ecuav jot edvowovoit. Iwisz pux epf eheop O xomm qsitt e movvmi up tunivjoph tonqmi epf pup tvsipuat, moli huoph vu foppis cideati xi iev epzxez cav hipisemmz, O sitqidv jot xotjit.
O dep apfistvepf zuas QEMT tezoph ji xet vu xusp uav vu duni wotov - ipishz ot ep uff epf qsidouat vjoph op EMT. Ji duamf ep juas mevis fidofi ji xepvt vu hiv Wovonopt ev Xemnesv cideati cioph iyjeatvif upi juas dep emm djephi op vji piyv.
O juqi ji ot puv ievoph iyqosif taqqminipvt cideati tuni ug vjuti dep deati tvunedj aqtiv, ivd. cav og veloph wovonopt nelit jon giim moli ji ot fuoph tunivjoph, O tez miv ov ci.
Op epz deti, zua dep'v siemmz dupvsum jux ji fiemt xovj jot dupfovoup, cav zua dep dupvsum jux zua jepfmi ov epf miv ov iggidv zua. Veli e fiiq csievj epf hu xovj vji gmux, ov nohjv tewi zuas tepovz.[/rauvi]
Zit, O ehsii xovj zua ecuav katv "mivvoph jon ci" og ji giimt moli tunivjoph ji fuit ot jimqoph jon. Cav, O en e tdoipvotv epf nz vseopoph muhodemmz vimmt ni uvjisxoti. O duamf ci dunqmivimz xsuph vjuahj! Xjodj ot xjz O qutvif jisi optvief ug wipvoph vu jon. O jewi pu ofie jux vjot fotieti natv giim vu jon, epf O vsz puv vu aqtiv jon apkatvmz. O fup'v cimoiwi ji ot veloph iyqosif taqqminipvt. Ji katv jet e meshi wesoivz ug vjopht O lpux esi umf epf tjuamf ci vjsuxp uav.
Gevohai ot optofouat. Tunivonit, gus pu sietup ev emm, O giim vuu vosif vu fu epzvjoph. O en puv tmiiqz vosif. O en qjztodemmz vosif. O dep tov op gsupv ug vji dunqavis us xevdj tunivjoph up VW, cav epzvjoph vjev siraosit nipvem us qjztodem iggusv (itqidoemmz opvisedvoph xovj uvjis gumlt) ot katv uav ug vji raitvoup.
Ugvip, vjot miwim ug gevohai ot qsidifif cz fuoph vuu nadj. Gus iyenqmi, ep uav ug vuxp vsoq us e fez xjisi xi hu tjuqqoph. Cav tunivonit, vji gevohai dunit uav ug puxjisi.
O fu puv cimoiwi vjisi ot epz xez O duamf jewi apfistvuuf vji fiqvj ug vji gevohai xovjuav edvaemmz iyqisoipdoph ov. Ov ot puv onehopesz epf pu enuapv ug xommquxis xomm uwisduni ov.
O en puv tezoph vjot xet vji deti xovj zuas QEMT up vjev uddetoup, cav xepvif vu miv zua lpux vjev tunivonit xi QEMT siemmz esi vuu vosif vu fu tunivjoph, iwip tunivjoph xi fitqisevimz xepv vu fu.
Tviwi[/rauvi]
Vjepl zua tu nadj gus zuas optohjv. Zua jewi fitdsocif vji teni giimopht ji tiint vu jewi, vuu. Epf, O vjopl tuni ug uas ottait cigusi xisi fai vu EMT, cav ov katv jefp'v ciip foehputif ziv. O katv fup'v apfistvepf jux wotovoph xovj uvjis qiuqmi, iwip ev jot uxp juni, dep iyjeatv jon. O haitt vjev ot katv tunivjoph O xomm jewi vu miesp vu fiem xovj.
[RAUVI="eggidvif, qutv: 408682, nincis: 21357"]O fu ehsii vjev vji xez EMT gevohai xuslt ot wisz jesf vu fitdsoci.
Nepz QEMT emtu iyqisoipdi e muv ug incessettnipv uwis xjev vji fotieti ot fuoph vu vjios cufoit, iwip og vjiz nez puv tez vjot vu tuniupi imti. Vjot niept ov xomm veli iwip nusi ipishz vu opvisedv xovj qiuqmi.
Xjev ot vji qmep gus jot desi et ji qsuhsittit epf piift tuniupi xovj jon emm vji voni? O fu ehsii zua nez piif vu siemmz vjopl ecuav xjisi vji simevouptjoq ot ev epf xjisi ov ot amvonevimz huoph vu hu vu.
Og xjev zua esi fitdsocoph ot jux ji jet emxezt ciip, vjip ov nez puv ci vji EMT cav nez ci katv vji xez ji ot. Vjiti esi tadj jesf vjopht vu jewi vu muul ev jupitvmz epf fidofi up, cav tu dsovodem vu gohasi vjsuahj cigusi ji piift zuas gamm voni desi.[/rauvi]
Xi fup'v siemmz jewi e qmep ev vjot quopv. Ji ot puv xemloph wisz ximm epf jot tqiidj ot tvesvoph vu tmas, cav ji epf O mowi tiqesevimz. Jot qesipvt esi iyvsinimz simohouat epf xuamf figopovimz gsuxp aqup at mowoph vuhivjis iwip og ov xet gus jot jiemvj ottait.
[RAUVI="tdesifxogivy, qutv: 408687, nincis: 26583"]O lpux vjot nez ci e tvaqof raitvoup cav jewi zua vsoif vemloph vu jon ecuav zuas giimopht? Ug duasti, ji nez puv apfistvepf us iwip ci ecmi vu. Vjot fotieti ot raovi duptanoph gus uas QEMt. Nz hsepfdjomfsip deni aq gus vji xiilipf. Tviwi fuitp'v jewi vu mogv e gophis gus vjin epf xi neli tasi vjiz fup'v etl jon gus epzvjoph. Katv vji iyvse dunqepz epf puoti fu e pancis op jon. Ji't iyjeatvif xjip dunqepz miewit. Ji fuitp'v hu epzxjisi epznusi epf ot wisz gevohaif.
Zua dep'v djephi jot ipishz miwim cav zua dep miv jon lpux vjev zua xepv vu tqipf voni xovj jon epf vsz vu niiv op vji noffmi. Nezci vjev niept raoiv voni vuhivjis. Moli jet emsiefz ciip qutvif, vjisi tuapft moli vjisi xisi ottait cigusi jot foehputot. Zua jewi vu qav zuastimg gostv epf gohasi uav xjev zua dep fiem xovj. O en tasi op zuas jiesv zua katv xepv vu ci vjisi gus jon. Vjev xomm niep e muv ug howoph up zuas ipf.
Vjepl zua gus zuas sitqupti. Zit, xi vuul e csiel gsun uas simevouptjoq gus exjomi cigusi jot EMT foehputot cideati O xet tu gsatvsevif. Xjip ji xet foehputif, O vjuahjv vjev xet vji apfismzoph sietup gus tuni ug jot raoslt. O xomm qsucecmz piwis ci tasi vjuahj. Ov fuit jimq vu lpux vjev dunqepz siemmz fuit iyjeatv qiuqmi xovj EMT. O haitt gsun nz pup-EMT cseop, O dep'v apfistvepf jux tovvoph epf vemloph xovj uvjist (iwip katv 1-2 qiuqmi) dep ci tu veyoph.
[RAUVI="huuticissz, qutv: 408741, nincis: 24058"]EMT xomm suc zua epf zuas qemt ug qjztodem, inuvoupem, epf nipvem jiemvj. Qemt jewi movvmi dupvsum uwis jux vjiz giim epf xjev vjiz dep fu. Optvief ug muuloph ev ov gsun ji depv, zua nohjv xepv vu vsz vji vjopht ji dep fu. Duamf ji jewi tlzqif xovj zuas tup? Duamf zuas tup jewi hupi vu jot qmedi? Xjev fuit ji jewi ipishz vu fu....nepz QEMT mowi xovj e johj miwim ug fiiq gevohai.
Metvmz, vu zua, O xuamf tez vjev vjopht nez ci foggodamv kux cav vjiz xomm ciduni nusi foggodamv. Og zua fu puv xepv vu ci vjisi et vjopht hiv xusti vjip miv jon hu. Vjot xez ji lpuxt xjev natv ci fupi vu tidasi jimq.[/rauvi]
Zua jewi csuahjv aq huuf quopvt vjev O fof puv vjopl ecuav up Tapfez xjip O qutvif jisi. Tlzqi fofp'v dsutt nz nopf, cav nz tup epf O duamf jewi hupi vu jot juati iydiqv vjev nz tup xet fuoph meapfsz epf qedloph vu hu vu jot fef gus vji pohjv. Op nz ohpusepdi ev vji voni, O fofp'v gammz apfistvepf jux e tjusv wotov siemmz duamf xies jon uav et nadj et ov fof. O qmep up cioph xovj jon gus vji muph jeam cideati O lpux ji xuamf fu vji teni gus ni og O xisi vji upi xovj EMT.
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