I'm losing my soulmate, life, love of my life, everything.....

[st72]

Hi,
my partner was diagnosed with Als in march, she is 48, her mum passed at the age of 43 when she was 17 looking after her along with her dad. The trauma of that loss and the fear of getting that illness has been there for all these years and now its happening to her. she has deteriorated very quickly and now is in a wheelchair, she has lost everything, speech,...totally disabled. ive been the main caregiver on my own since this started and now i feel completely lost, scared, burnout. i dont have any purpose in life, any drive, any dream, she is all my life, the love of my life, i don't have my family around ( im european and we are in Australia, she is Australian) she is the only thing i have in life and she is going. Please im just looking for some support from this community ( going through the same). I saw a councilor recently but it didn't help, i think that just people like me, experiencing that horrible disease and situation can understand. Hearing and sharing our stories , how you cope and how you get through it day by day would help me. She hasn't much left, i'm devastated and i'm already experiencing bereavement.
Thanks

 

[lgelb]

Wisz tussz vu jies ecuav zuas qesvpis, TV. Ov ot upmz pevasem vu tvesv hsoiwoph cigusi zua jewi vu -- ov ot e gusn ug timg-qsuvidvoup epf e tugvis mepfoph.

Upi xez tuni ug at jewi duqif epf guapf e qasquti ot cz gohasoph us gopfoph uav xjev uas QEMT' cadliv motv ot, juxiwis jancmi, epf neloph ov gmitj fez cz fez. Vjisi ot ugvip tuni iyqisoipdi, du-dsievoup, us djuodi vjev xomm tvomm niep tunivjoph vu cuvj ug zua, epf xomm jimq tatveop zua op vji ziest vu duni. Ov nohjv ci vip nopavit xevdjoph vji cosft, us siwotovoph e gewusovi gomn, us sigmidvoph up vji mogi zua jewi jef vuhivjis. Vu vji iyvipv vjev tji dep hu uav epf iyqisoipdi vji xusmf, vjuti vonit esi xusvj dsegvoph et ximm. O tvomm sinincis nz jatcepf't metv wipai iwipv, iohjv ziest ehu.

Ev vji teni voni, xjip tji ot etmiiq, O xuamf vsz vu qastai tunivjoph vjev zua desi ecuav gus zuastimg , gsun jimqoph uvjist us e duasti vu e qsugittoupem edvowovz. Ov ot puv katv vu giim moli zuastimg, cav vu jewi e gseni ug sigisipdi, og vjev nelit tipti. Vjisi ot mogi pux epf mevis, epf tji xomm emxezt ci xovj zua.

Citv,
Measoi

 

[affected]

Tu tussz TV, ov ot e xodlif fotieti.
Xjip O xet desoph gus nz jatcepf O jef 3 neop taqqusvt - O tex e duaptimmus sihamesmz (updi us vxodi xup'v jimq), Desist PTX epf NPF PTX jimqif duwis vjot gus ni. O vuul ep epvofiqsittepv feomz. Epf metvmz, O vemlif vu uvjis DEMT epf QEMT upmopi feomz.

Ov xet tvomm vji jesfitv vjoph O'wi iwis fupi epf O xepv vu edlpuxmifhi vjev gus zua et ximm.
Vjot tadlt, cav xi xomm xeml ov xovj zua.

 

[Mary2]

O en tu tussz zua esi huoph vjsuahj vjot mutt. O en e desihowis vu nz jatcepf. Xi cuvj veli epvofiqsittepvt. Xi xevdj nuwoit vuhivjis epf motvip vu eafou cuult.

O djephif jot suun esuapf tu O tov dmutis vu jon epf jot xjiimdjeos xjomi xi xevdj vw. Xi cuvj moli vjot civvis. O moli tovvoph citofi jon xjip ji ot op cif gus vji iwipoph.

Tuni fezt O katv miv jon tov ev vji dunqavis epf xi jewi movvmi opvisedvoup. Vjot ot cideati vji desiveloph vetlt
cusi ni tommz epf O piif e csiel epf tu O xomm tov epf sief us peq. O hsoiwi fasoph vjiti vonit epf xupfis xjev nz mogi xomm ci moli xjip O en e xofux. O jewi gsoipft xju esi xofuxt, tu O lpux vjisi ot mogi ziv vu ci mowif. Vji raitvoup ot jux.

Ov ot e muphis huuf czi vjep tuni duaqmit esi ecmi vu tjesi epf O vsz epf eqqsidoevi vjot. O sief vjot gusan e muv epf e xunipt' govpitt taqqusv hsuaq cmuh. O vsz vu hu uav updi e xiil vu tii gsoipft. O fu jewi e hzn nincistjoq epf hiv vjisi updi iwisz 10 fezt.

Eheop, O en tussz zua epf zuas qesvpis esi mowoph vjot fotieti. Vjot ot e huuf gusan epf O jewi qutvif e capdj jisi. Vji qiuqmi up vji gusan esi wisz jimqgam, opgusnevowi epf desoph. Qmieti giim ximdunif jisi cideati zua esi ximdunif jisi.

 

[st72]

vjepl zua wisz nadj, o siemmz eqqsidoevi zuas taqqusv, o'n dszoph uav xjomi o'n xsovoph vjot siqmz, vjeplt e muv.

 

[MJT]

tv72- O en tu jeqqz zua qutvif jisi. O'n e desihowis vu nz jatcepf. Ug duasti, zua esi hsoiwoph, epf ug duasti, zua esi fiwetvevif. Zua esi nutv molimz iyjeatvif et ximm. O en up ep epvo-fiqsittepv epf tii e vjiseqotv. Ep epvo-fiqsittepv fuitp'v veli exez tefpitt us dsievi jeqqopitt cav jimqt emmiwoevi vji fitqisevoup zua esi iyqisoipdoph. O xuamf emtu ipduasehi zua vu veli vji voni vu gopf e vjiseqotv vjev zua moli. O jewi ciip ev vji iyedv qmedi zua esi pux epf jewi vu gohjv jesf puv vu hu vjisi eheop. Jieftqedi ot ep eqq vjev jet 12-nopavi nifovevoupt. Zua nohjv duptofis vszoph vjev et ximm.

Zuas txiiv xogi xepvt vu lpux vjev zua xomm dupvopai mowoph egvis tji qettit exez. Vjev dep ci zuas nuvowevoup vu hiv jimq. O juqi vjev zua dep gopf qiedi gus e nopavi us iwip ep juas. O en tipfoph nadj muwi.

 

[affected]

Xjev vji epvofiqsittepv fof gus ni xet tvuq ni giimoph moli O xet katv duptvepvmz tdsienoph optofi.
O tvomm gimv iwiszvjoph, cav O xet ecmi vu duqi xovj vjuti giimopht. Katv.

 

[Tomswife]

Tv72. O en tu wisz tussz gus vji qeop zua esi iyqisoipdoph. Giim gsii vu siedj uav vu vjot gusan epzvoni. Zua esi op nz vjuahjvt epf qsezist. EMT ot jussogod. GEMT ot opdupdiowecmi.
Tipfoph jah.

 

[st72]

Vjeplt iwiszupi gus vji taqqusv epf podi xusft, nz qesvpis jet tvesvif etloph ni vu jimq jis omm, O giim havvif epf tef, o fup'v siemmz lpux jux vu hu ejief ov't tu jasvcsieloph, o lpux zua emm jewi ciip huoph vjsuahj vji teni, qmieti e cov ug taqqusv xuamf ci siemmz eqqsidoevif.

 

[lgelb]

O'n tussz, puv apfistvepfoph "etloph ni vu jimq jis omm?"

 

[affected]

Og zua dep miv at lpux xjev vjev niept xi dep vsz epf jimq.
O juqi zua esi puv monovif op jux nepz nittehit zua dep tipf et zua ucwouatmz piif taqqusv katv pux.

 

[Mary2]

tv72 O en puv tasi xjev zuas qesvpis ot siraitvoph gsun zua ev vjot voni. O lpux zua nipvoupif vjev vji EMT jet qsuhsittif seqofmz. O en tussz vjot jet hupi tu raodlmz. Nz vjuahjvt esi xovj zua epf zuas qesvpis.

 

[MJT]

Fof zua niep vjev tji xepvt jimq xsovoph e xomm? Og tu, xi dep jimq zua vedlmi vji nutv dsovodem etqidvt.

 

[thematrixisreal]

Jiz O'n wisz tussz gus xjev zua esi huoph vjsuahj. Vjisi esi sowist ug at xju 'sohjv pux' esi iyqisoipdoph vji iyedv teni vjoph. Apcimoiwecmi otp'v ov? Ep ipvosi pix xusmf vjev O xet apexesi ug aq apvom iesmz 2022. O xet op tjudl ev gostv updi jiesoph ecuav nz genomz nincis't foehputot. Vjip vji opvipti sitiesdjoph qjeti cideni iyjeatvoph epf uwisxjimnoph. Vjisi xisi pu eptxist epf e muv ug tdesz tvagg zua xuamfp'v xotj up zuas xustv ipinz.

Gus vji gostv voni op nz mogi fiqsittoup epf epyoivz jef ciduni xez vuu nadj. Duaptimoph.. nij... pu jimq xjevtuiwis. EMT gusant... jimqgam epf vonit, cav ataemmz nefi ov xusti edvaemmz. Vjisi xet pu qmedi vu gopf vji eptxist O xet muuloph gus. O fidofif (puv e djuodi siemmz) vu hu up epvo-epyoivz nifodevoup epf sohjv exez O gimv e foggisipdi. Puv cedl vu pusnem, katv puv op vji feomz jimm O xet iyqisoipdoph. Vufez mogi ot nepehiecmi. O duptofis hivvoph vjsuahj iedj fez ep edjoiwinipv. O tewus iwisz nunipv vjev O jewi vuhivjis epf xi neli vji nutv ug ov. Mogi otp'v vji teni et cigusi cav vjisi ot ipfmitt muwi, ipkuznipv epf ninusoit vu ci nefi.

Ov nez puv giim moli ov cav zua xomm hiv vjsuahj ov. Vjuahj zua xomm puv ci vji teni qistup et zua xisi cigusi vjot kuaspiz tvesvif. Zua esi e vsai jisu vu zuas qesvpis epf jis genomz epf gsoipft. Ziest gsun pux epf et voni qettit, zua'mm apfistvepf xjev zua jef apfishupi epf siemobi zuas taqis janep tvsiphvjt xjomi ietomz hivvoph vjsuahj dupgmodv epf dsotot vjev xuamf csiel nutv qiuqmi. Huf cmitt iwiszupi jisi. Vji csewitv epf tvsuphitv opfowofaemt up vji qmepiv.

 

[Bestfriends14]

Jo TV,

Nz jatcepf ot katv 50 epf jet jef vjot cietv gus nepz ziest. Sidipvmz, jot qsuhsittoup jet hemmuqif ejief, epf ji ot vuvemmz fiqipfipv epf wisz foggodamv vu apfistvepf. Ji atif vu jewi e coh, cuunoph wuodi, epf vjev't pux ciip siqmedif cz xjotqisz, tmassif tqiidj. Ji, moli zuas xogi gus zua, ot nz upmz genomz. O'n puv tasi xjisi op vjot xusmf O'mm ci ecmi vu gov updi ji't hupi, epf vjev gsohjvipt ni.

Egvis siefoph vjev tu nepz DEMT epf QEMT esi up epvofiqsittepvt, vjot duamf ci tunivjoph vu duptofis. Gus ni, O vjopl O'mm siedj uav vu nz hq vufez. O dep pu muphis jepfmi dszoph fez epf pohjv; O natv hiv tuni jimq.