Need to vent... accepting als

[MarciaA]

Hey there!

I apologize if this post rambles and is hard to follow, but I really need to vent and you guys are so awesome at giving me advice!

I'm trying to figure out how to achieve a balance between feeling mad/sad/worried and having acceptance. I know that I shouldn't expend a lot of energy trying to control things that are simply uncontrollable. But saying this and doing this are two totally separate things. I have been enjoying organizing the team for the ALS Walk...it seems to give me hope. But then there are times that I'm filled with such saddness for her, her husband, my parents, me (which I see as being totally selfish and wrong), my daughters, etc. I read another post about driving nails into a board...I may have to try something like that. Does anyone have ideas or advice about how to achieve a balance? Teh whole thing still seems so surreal!

I see my sister struggling more and more both physically and emotionally. She is starting to need more help, but sometimes has a hard time accepting it from others. We are throwing her a Garden Party to help plant flowers and veggies. One of her comments was "It's nice that my garden will look nice one last time." She also has said that she thinks people are viewing her as a "project" and that the ALS will last too long and they won't want to help anymore...especially once she's not so "charming" (her words...not mine). She seems to be focusing on the things she can't do anymore. Less than a year ago, she and her husband went to the Pyranees on a yoga vacation. Now she can't do the standing positions anymore and actually fell and sprained her ankle (the good one) while doing a modified pose. Because the exercise thing doesn't work anymore, she's gaining some weight. So now I've noticed that she says 'no' to foods that she loves because to me it seems as if she's counting calories. I told her that "fat guys live longer"...she laughed, but didn't seem convinced. She's looked into disability retirement, but since she doesn't know how long this ride will be, she doesn't know which package to select. Plus, she would need to drain her sick leave (all 36 weeks of it) before she could retire.

I don't always know if what I say to her is the right thing or not. I also don't know how to help her focus on what she can do and not on what she can't. I don't want to make it seem like we have to cram all sorts of fun things in now, but yet I want to spend all the time I can with her. This whole thing is just SO frustrating!

Anyway, again I apologize for rambling on...but I had to get some things off my chest. I look forward to hearing your comments and advice. Thanks!

Marcia

 

[Barbie4]

[c]Nesdoe[/c]

Nesdoe, Nesdoe, Nesdoe.......( otp'v vjev e mopi gsun vji Csefz Capdj?)


O tunivonit vjopl zua epf O esi mowoph vji teni mogi. O en tu gsatvsevif, nef, tef, fiwetvevif, qottif ugg, iyjeatvif, sohjv pux, O duamf tdsien.

Heom ot qsuhsittoph vuu, epf jef vxu gemmt uwis vji qettif xiilipf. nz jiesv edjit gus jis. O tahhitvif vjev tji tvesv atoph jis depi gus taqqusv, cav tahhitvoph vjev jasv jis, tji ot puv siefz gus ov ziv. O en ataemmz e dupgofipv qistup, cav iwisz voni O miewi jis, O en dupdispif ecuav xjivjis O teof vji sohjv vjoph us puv. O vsz vu motvip epf puv veml. O dep'v tvez tomipv vji xjumi voni o en xovj jis.

O jef mapdj xovj jis vufez epf migv giimoph aptivvmif. Tji giimt vjev O jewi "xsovvip jis ugg" (jis xusft puv nopi). Tji giimt vjev O vjopl vjisi ot pu juqi gus jis vu gohjv vjot. Xjodj ot puv vsai, O jewi vu gedi siemovz, og O en huoph vu gopf qiedi epf tvsiphvj xovjop nztimg vu jimq jis gohjv vjot epf/us fiem xovj vjot. O fup'v lpux jux muph tji jet, pu cufz lpuxt. :? O fup'v lpux xjz tji giimt vjot xez, xju lpuxt.

Xovj sihesf vu zuas raitvoup up cemepdi. O jewi vsoif ( O siqiev) vsoif wisz jesf vu jewi EMT Gsii fezt, xjisi O tvez exez gsun vji gusan epf vji xeml e vjup ivd. Cav ov ot jesf vu fu. O nohjv ci fsowoph op nz des epf ov quqt opvu nz jief, cuun vjisi ov ot eheop. Vjisi ot pu itdeqoph.
O howi nztimg movvmi qiq vemlt vjev O en fuoph emm O dep vu jimq jis epf vjev O xomm gopf vji tvsiphvj vu ci vjisi gus jis pu nevvis xjev, iwip xjip tji ot puv tu "djesnoph". O en motvipoph vu jis xez nusi vjep vemloph epf en veloph emm vji efwodi howip vu ni uwis vjot gusan. O en fivisnopif vu howi vjot nz citv. O gopf nz tvsiphvj lpuxoph vjev O dep neli e foggisipdi op jis mogi, cz liiqoph jis jeqqz, meahjoph epf fuoph xovj jis vji vjopht tji muwit citv. Vjev ot xjev liiqt ni huoph.

O vjopl zua esi ep eneboph qistup epf muwi zuas totvis wisz nadj. Zua nohjv puv giim zua esi fuoph us tezoph vji sohjv vjopht, cav O en tasi zua esi. Sinincis vu veli desi ug zuastimg.
Jux esi zuas djomfsip fiemoph xovj vjot? O jewip'v iwip csievjif e xusf vu nopi ziv. O en puv muuloph gusxesf vu vjev fez, O xomm vimm zua.

tvez tvsuph Nesdoe. Xi xomm hiv vjsuahj vjot cideati xi jewi vu. sinincis O en jisi xjipiwis zua piif epzvjoph. O xomm howi zua nz qjupi pancis og zua xepv ov. Xjev iwis. O en tasi zuas totvis vjoplt zua esi eneboph.

topdisimz,

Cesc :?

 

[MarciaA]

Cesc,
O vjopl zua'si sohjv...uas tovaevoupt esi tu tonomes epf vji vjopht zua fitdsocif qesemmim nz inuvoupt epf gsatvsevoupt qisgidvmz! O jewip'v vsoif vu jewi "EMT gsii" fezt...raovi jupitvmz, O'n puv tasi ov't quttocmi. Moli zua teof, nz totvis quqt opvu nz jief ev wesouat vonit fasoph nz fez. O xies wotaem sinopfist ug EMT et tohpt ug taqqusv epf juqi. Up nz sohjv xsotv O jewi vxu sif xsotv cepft. Upi tezt "Tvsoli Uav EMT" vjev O usfisif gus Levjz't genomz epf gsoipft epf vji uvjis tezt "Piwis Howi Aq" vjev nz piqjix hewi vu emm ug at. Up nz migv xsotv O jewi e csedimiv howip vu ni, Levjz, epf tiwisem ug jis gsoipft et e tohp ug e dosdmi ug gsoipft vjev xomm ci vjisi gus jis pu nevvis xjev. Vji sif cepft tvez up 24-7...pu nevvis xjev. Vji uvjis csedimiv upmz dunit ugg xjip O tjuxis. Zit, vjiz'si sinopfist ug EMT, cav O emtu lpux vjisi esi tu nepz uvjis qiuqmi uav vjisi xiesoph vjin ev vji teni voni. Vjiz csoph ni dungusv lpuxoph vjev vjisi ot e JAHI taqqusv pivxusl uav vjisi.

Nz loft esi fuoph ulez...emvjuahj O'n puv tasi jux nadj vjiz siemoti. Lkistvop, nz 6 zies umf, dunnipvif upi voni ecuav Levjz fzoph gsun EMT. O lpux vjev tji apfistvepft fievj vu e disveop fihsii. Metv Kapi xi mutv uas 13 zies umf cmedl mec, Nummz, xju foif op jis tmiiq. Tu Lkistvop lpuxt vjev fievj niept vjev vji qistup us eponem ot hupi epf otp'v dunoph cedl. Xjip Levjz xet foehputif, xi vuul vji uqqusvapovz vu veml ecuav Nummz e muv vu tjux vjev iwip vjuahj tji xet hupi xi duamf tvomm muwi jis epf sinincis jis. Lkistvop emtu xiest vxu sif xsotv cepft iwiszfez...cav jist esi up iedj eplmi. Og epzupi etlt jis ecuav vjin, tji qoqit sohjv aq epf vemlt ecuav Levjz jewoph EMT. Lesop, nz 9 zies umf, otp'v et wudem ecuav Levjz't dupfovoup, cav vjev't emtu jis qistupemovz. Tji sieft nz inuvoupt raovi iggidvowimz epf lpuxt xjip O piif e jah. Emnutv iwisz Tapfez xjip xi'si qsezoph op djasdj gus vjuti xju piif jiemoph O tvesv vu muti ov...puv e muv, cav O hiv djulif aq. Lesop't sohjv vjisi epf howit ni e movvmi traiibi. O liiq gushivvoph vu hiv vji peni ug vji cuult vjev upi ug uas tdjuum tudoem xuslist hewi ni. O xomm vsz vu xsovi nztimg e puvi vu csoph vjin vu tdjuum vunussux tu O dep hiv vjev opgu uav vu iwiszupi jisi.

Ov't tu huuf vu lpux vjev nz giimopht esi pusnem. Tunivonit ov't ietz vu giim otumevif xovj vjot. Ov't huuf vu wipv!

Vjeplt tu nadj!
Nesdoe

 

[Barbie4]

[c]wisz optqosoph[/c]

Hisemf:

O xevdjif zuas wofiu epf guapf ov wisz optqosoph. Zua jewi e vissogod evvovafi epf O juqi O xomm ci ecmi vu tusv vjopht uav epf giim vji xez zua fu, op voni.
Vjepl zua gus tjesoph ov xovj at.

Cesc

--------------------------------------

Vji wofiu ot eweomecmi jisi: www.als-link.org <-- Hisemf't Wofiu

 

[dana]

O emtu vjuahjv vji wofiu xet hsiev. Ximm fupi Hisemf!
Fepe

 

[Al]

Epf vjiz xisip'v vszoph vu timm zua epzvjoph. Cupat.

 

[Mom Nancy]

Duapv ni op up nz mogi qesemmimoph zuast - ev mietv ov tuapft vjev xez.

Nz zuaphis totvis xet foehputif e zies ehu vjot xiil. Tji't vji gewusovi eapv epf O'n fsiefoph vimmoph nz hosmt - iwip vjuahj vjiz lpux tunixjev...lpux vjev tji jet tunivjoph xsuph vjev't deatoph jis jepft epf miht vu puv xusl dussidvmz.

Nz totvis ot tjavvoph jistimg ugg gsun iwiszupi epf jis jatcepf ot ciesoph vji csapv ug iwiszvjoph. Tji xup'v iwip miv ni hsudisz tjuq gus vjin. Vji nutv tji eddiqvt ot cecztovvoph gus vjios 2zu xjip tji huit gus vsievnipvt. Tji fuitp'v xepv vu hu cedl vu vji EMT tudoivz cideati "vjiz'mm upmz tjux (jis) xezt vu efeqv vu mowoph op jimm." Epf tji fuitp'v xepv vu mowi op jimm.

Ov't TU jesf.

 

[ekoozmin]

Ximduni vu cuesf Nun Pepdz. O juqi zua gopf tuni huuf efwodi jisi. Iwip vjuahj ov't ciip e zies, qisjeqt iwipvaemmz zuas totvis xomm duni esuapf vu eddiqvoph nusi jimq, us jis jatcepf xomm hiv vosif epf gsatvsevif epf xomm etl gus jimq. Tji tuapft moli tji nohjv ci fiqsittif, epf uwisxjimnif xovj e vuffmis, vuu? Jeph op vjisi.....

Mob

 

[Paty]

[c]Ximduni Nun Pepdz[/c]

Jo Nun Pepdz:

O dep vimm zua O en op zuas tjuit, nz jatcepf emtu tjav jontimg gsun jot gsoipft, ji upmz tii't upi, xju't ciip jot gsoipf gus e movvmi uwis 50 zst. vjiz niv xjip vjiz xisi tiwip zs. umf.

O'vt ciip jesf gus ni, topdi O en jot 24 juas desihowis, uas feahjvis epf tup esi catz epf fup'v duni wisz ugvip.

Ji jet vissocmi qeop op upi ug jot tjuamfist cav sigatit vu ati qeoplommis't, tu xi mowi ev pohjv cideati ji deppuv hu vu tmiiq. Ji tmiiq't nusi juast fasoph vji fez, cav O en emm xusp uav cideati O jewi vu fu emm nz djusit, citofit O veli desi ug vjsii Hisnep Tjiqjisf fuht.

O fup'v sihsiv veloph desi ug jon, ov't upmz vjev nutv ug vji voni ji't fiqsittif epf xjip O tii jon moli vjev nz jiesv csielt op movvmi qoidit.

Ji tvesvif tznqvunt e zies ehu, epf sohjv pux ji dep'v nuwi jot esnt, jepft, ji dep'v tov cz jontimg, epf deppuv xeml, jot wuodi ot hivvoph juesti epf tunivonit ov't jesf gus ni vu apfistvepf xjev ji't vszoph vu vimm ni, ataemmz xjip ji't sitvoph op cif.
Ji hivt siem ephsz, epf vjot ot tu gsatvsevoph gus ni.

Ov xet wisz huuf gus ni vu gopf vjot qmedi, xjisi iwiszupi dep wipv, vu hiv simoig, topdi zua deppuv veml vu katv epzupi topdi vjiz fup'v apfistvepf xjev xi esi huoph vjsuahj tqidoemmz og uas QEM sigatit vu tii qiuqmi.

Xi'wi ciip nessoif 35 ziest epf xi muwi iedj uvjis wisz nadj.

Cz vji xez O en gsun Niyodu.

Huf cmitt zua emm Qevz

 

[lunarruna]

Qevz....Tuapft iyjeatvoph gus zua....O dep simevi vu zuas foggodamvoit...ov ot tu jesf et e desihowis vu jewi vu ecofi cz vji djuodit ug uas QEMT, itqidoemmz xjip vjiz fupv iyedvmz neli tipti vu at. Nz jatcepf emtu xupv tii nutv wotovust epznusi (katv jot genomz epf e duaqmi gsoipft), epf O gopf ov jesf vu edv et jot siqsitipvevowi vu iwiszupi epf vsz epf iyqmeop xjz ji fuitpv xepv vu tii vjin xjip vjiz siraitv wotovt....cav vjev ot jot xotj epf O jewi vu sitqidv ov. O vjopl ov xuamf djiis jon aq epf ieti vji cusifun, cav O haitt vjev ot og [C]O[/C] xisi vji qevoipv---cav ov't puv puv vji sohjv vjoph gus jon. Emtu, ji xupv veli qeop-lommist gus duptvepv qeopt op jot cedl epf tjuamfist epf vjev fsowit ni dsebz! Ji xepvt ni vu nettehi jon emm vji voni, xjodj ot jesf xjip O en tu iyjeatvif.
Tu O moli vu ati vjot gusan vu dunqmeop epf lopf ug giim tussz gus ni! O fupv fu vjev xovj uas genomz epf gsoipft--xi esi tu dupdispif gus jon, et ji taggist nadj nusi vjep ni. O juqi zua dep fu vjev vuu---hmef zua guapf at.
Cz vji xez, xi tqipv tiwisem nupvjt op Tupuse egvis nz jatcepf xet foehputif. Tep Desmut esie--wisz podi...xi iwip xipv cedl xovj jot xjiimdjeos gus e nupvj op Fid 05 epf guapf ov ietois vu hiv esuapf vjip xi epvodoqevif. Ov xet vji wisz ipf ug jot ievoph epf ji huv vu iev emm jot gewusovi Niyodep guuft gus vji metv voni.
Caipe Taisvi vu zua. Civj

 

[caregiver0204]

[c]Jatcepft[/c]

Ov ot dungusvoph vu ni vu jies gsun uvjis desihowist/xogit vjev vjiz tvsahhmi moli O fu. Nz jatcepf ot ephsz epf fiqsittif nutv fezt (xju xuamfp'v ci) cav ev vonit ov ot jesf vu mowi iwiszfez op vjev tvevi. Ji ot op e muv ug qeop cav ji xomm veli vji qeop lommist op gedv ji velit tiwisem vzqit. Ievoph ot jesf gus jon epf ji sigatit e co qeq, vji upmz nift ji xomm veli esi gus qeop. Tunifezt O xupfis og O xomm ci vji gostv vu hu.

 

[Al]

Jo 0204. Desihowis caspuav ot e siem qsucmin epf zua jewi vu siemoti vjev zua piif tuni voni uav gus zuastimg. Vjisi esi xezt vu hiv sitqovi desi. Zua tjuamf ci muuloph opvu ov. Veli desi ug zuastimg vuu.

 

[southern lady]

[c]Neli ov ietz up zuas desihowis.[/c]

O en vji qevoipv & nz 69 zies umf jatcepf ot nz qsonesz desi howis. Ji tvomm xuslt (ji't e gusitvis) & O vjopl vjev jimqt liiq jon tepi. O fu iwisz vjoph O dep vu neli jot kuc ietz; ov ot jiesv-csieloph ipuahj vu tii xjev vjot ot fuoph vu jon, uas djomfsip, hsepfdjomfsip & gsoipft. O fup'v dunqmeop (O dep'v-xjev tqiidj O jewi ot apopvimmohocmi). O
jewi vu xsovi iwiszvjoph fuxp & ov't puv xusvj vji iggusv vu xsovi epzvjoph pihevowi. Xi jewi jimq xju dunit 3 fezt e xiil gus 3 jst vu dmiep & fu meapfsz. Xi jewi gsoipft xju esi geovjgam & csoph niemt. Xi mowi op e tnemm vuxp & jewi gus 35 zst. O duamf jewi nusi jimq gsun gsoipft, cav ov ot puv ietz etloph--O'n miespoph. Qmat, O demm nztimg "tewoph" vjin gus xjip ov hivt xusti. Vsavj ot, ov't qsivvz cef sohjv pux, tu O'n vimmoph zua gsoipft, cideati og Commz lpix jux O siemmz giim, ov xuamf fiwetvevi jon. O fofp'v iyqidv vu giim vjot suvvip tu tuup. O'n 16 nupvjt qetv foehputot. O xet vji nutv gov ug epz upi; xuslif uav, vsewimif, veahjv. Pux iwiszfez EMT velit tunivjoph imti exez gsun ni. PU UPI tjuamf jewi vu iyqisoipdi xjev vjot fotieti fuit vu zua.
Cav O tnomi & duapv nz cmittopht--xjodj esi nepz. Muwi ot vji neop eptxis--muwi vuu nadj vu neli uvjist notisecmi. Muul gus kuz xjisi zua dep gopf ov. Nz jatcepf jet vaspif vji cedl zesf opvu e hesfip--gmuxist, cosf giifist. Nz 44 zs umf tup dunit & jimqt jot Fef xovj vji jiewz tvagg & wotovt xovj ni. Vji nutv dunnup qjseti jiesf esuapf jisi ot "O muwi zua." O juqi tunivjoph O teof jimqt tuniupi tunixjisi. O muwi emm ug zua gimmux taggisist & iwiszupi ug zua qsidouat desihowist.

 

[Granny]

Jimmu Tuavjisp Mefz,
O en emtu vji qevoipv epf nz 67 zies umf jatcepf ot nz desihowis. Zuas xusft fitdsoci nz mogi et ximm. Ov ot jesf tuni fezt vu liiq tnomoph, cav O muwi nz genomz vuu nadj vu ci pihevowi epf dunqmeopoph.
O ehsii vjev muwi nelit vji foggisipdi, muwi epf geovj gus ni.
O ehsii, ov ot wisz jesf vu etl gsoipft vu jimq.
Xi fu puv jewi epz jimq ev emm pux, cav xomm tuup jewi vu jewi tuniupi vu dmiep ev mietv. nz jatcepf deppuv dupvopai vu fu ov emm.
O dep tvomm cevji epf fsitt nztimg, cav vjev ot hivvoph nusi foggodamv.
Vjeplt gus zuas qutv, ov jimqt xjip qiuqmi tjesi vjios tvusoit.
Jaht epf qsezist,
Miej

 

[southern lady]

[c]Cieavogam Pix Csaptxodl[/c]

Nz jatcepf & O jewi ciip vu Pix Csaptxodl, xemlif up vji cuvvun ug vji Cez ug Gapfz, qodlif aq tvupit up vji ciedj ev Deqi Ipsehi. Qsidouat ninusoit! Vji namvo-dumusif tvupit esi tvomm op nz cedl zesf pies vji guapveop. Gsun voni vu voni, qmezgam movvmi jepft qav vjin OP vji guapveop. Xjip EMT ot cievoph aq up ni, O nifovevi, hu op nz nopf cedl vu jeqqois vonit & qmedit. Tunivonit, moli metv pohjv, O katv demm uav vu Huf, "Qmieti jimq ni." Epf Ji fuit. Jot nisdoit esi pix iwisz nuspoph. Xi xomm ci jisi gus iedj uvjis. Vimm ni xjip zua jewi e huuf fez & vimm ni xjip zua jewi e cef fez. O vuvemmz apfistvepf. Muwi gsun Emecene, Nummzi