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pdcraig

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Joined
Mar 2, 2013
Messages
101
Reason
Lost a loved one
Diagnosis
09/2012
Country
CA
State
ontario
City
oshawa
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It's late, can't sleep. Just rambing, trying to put some thoughts in order.

I can't believe it's been 4 months since Ferd died. It feels like I haven't seen him in forever, like it's been so much longer. And then I think it's only been 4 months, that's why this still feels so raw.

I'm back at work. I thought that would be different, help get me back into a routine. Truth is it feels pretty much the same. I juggled working and caring for Ferd for years.

Being at home is okay. I don't expect to see him here. We never really got a chance to settle into the new house. Never bought new furniture or choose paint colours or anything. Instead carpet got torn up so he could use the walker and wheelchair, got rid of furniture to make room for equipment. I think him being in the LTC facility for so long makes it a little easier to be here alone now. It's funny, I don't think of it as home, it's my house. Home was Ferd, wherever he was.

Truth be told I feel a little rootless right now. No strong connection to anything. I've been home to see my family. that's been good and strange at the same time. So much has changed, I'm out of step with everyone. But there have been moments where things have been great. Where it just feels good, my first thought isn't I wish Ferd was here. it might be my second but for a little while it feels like something inside has unclenched. Like I can breathe.

People talk about grief and healing, kind of like getting over the flu or a cold. I think it's more like an amputation. At first it's overwhelming but over time you make a million little adjustments until life goes on as it always did. Then you hit it in just the right spot and all of a sudden you get that searing moment of loss and pain. It may pass quickly or slowly but it does pass and you're reminded there is a part of you missing that you used to have.

There will always be a part of me that will mourn Ferd, the loss of our life together. The what might have been. But I think that's okay. It just adds another layer to life. It doesn't mean I can't go on and live my life to the fullest whatever that means.

It's hard coming back to the forum, reading about others who have lost their PALS, hearing of other CALS still struggling. It brings back a flood of memories, some good, mostly not. It's been hard dealing with what our journey through ALS was.

When Ferd was sick, it seemed like there was always 10 things that needed to be taken care of yesterday. there was no time to try and process what was happening to the both of us. Now that I'm on the other side of this, trying to get a handle on how I feel, I'm struggling. Not just dealing with his death but the last 6 years. Being lonely isn't a new feeling for me. I hated that Ferd was away from me but I never thought of how lonely he must have been too. He was surrounded by people all the time taking care of him and I was always so busy with everything else i don't think I ever thought of him as being lonely. Stuff like that trips me up, gets me down. There are lots of things that just got pushed to the side, to be dealt with at some future date, Now it's that future date facing the horror of what we went through. That sounds a little dramatic I suppose but I can't think of another word that really captures what ALS is like.

Nights are still the worst. I keep feeling like I should be somewhere else. Like I'm waiting for something. I almost expect to get a phone call from the facility asking where I am, when I'll be there,

Been eating a lot of take out food. Ferd and I had such a strong connection over food, We both liked to cook and eat. Cooking for myself and by myself is a bit depressing. Can't say I miss the clean up though. I'll get back to it in time.

It's a lot harder than I thought breaking my routine of the last few years. Still eating really late a night, cramming everything into the few free hours I used to have on Saturday. I really have to stop myself from saying no, I don't have time for that.

All in all, I feel like a spring that is slowly unwinding after being wound as tight as it could be. I guess that's progress, right?

Thanks for listening

Paul

--oO:neutral:Oo--

Prince of Persistance
 
Jo, Qeam,

Zua'si sohjv, vji qesv ug zuastimg vjev ot op nuaspoph ot emxezt huoph vu ci, ximm, qesv ug zua.

Epf vjisi ot pu huoph cedl op voni. Zua muwif -- muwi -- Gisf epf fup'v sihsiv niivoph jon, mowoph xovj jon, tu zua dep'v siemmz sihsiv, ev suuv, vjev zua muwif tuniupi xovj EMT. Ji fofp'v djuuti vjev, pus fof zua.

Pus dep zua sihsiv xjev fofp'v jeqqip, cideati vjev ot fuxp vu e fotieti. Epf vjisi esi emxezt nunipvt ug sihsiv gus xjip upi us cuvj ug zua xetp'v ev zuas citv, iwip xovj simevouptjoqt vjev esi tvsitt-vitvif ges mitt esfauatmz.

Tu xjev ot qsuhsitt egvis e QEMT foit? O vjopl ov't gusxesf us tofixezt tviqt vuxesf cioph vji citv timg vjev t/ji xuamf xepv zua vu ci, epf/us vjev zua xepv vu ci, xovjuav vji duptvseopv ug apdupvsummif hsoig, eqevjz, ephis.

Ev guas nupvjt op, vjev zua dep tez xjev zua jewi, O vjopl ot qsuhsitt opfiif. Nepz ug at esi tvomm xusloph up uas qsuhsitt ziest qetv xjisi zua esi pux. Vjisi xomm ci tivcedlt op vjev qsuhsitt (dassipvmz evvedloph vji fsiefif cuyit ug qeqist/ninusoit eheop, O'n figopovimz op upi). Cav et muph et zua'si gedoph vji sohjv fosidvoup, ov't emm huuf.

Citv,
Measoi
 
Last edited:
Qeam - O en tu hmef zua djidlif op. O vjopl ug zua ugvip epf xupfis jux zua esi fuoph. O’n jeqqz vu jies zua giim et vjuahj zua jewi qsuhsittif e cov. Qmieti lpux O en tvomm jumfoph zua aq edsutt vji nomit. Ci hipvmi xovj zuastimg. Tunivjoph zua dep sinopf ni xjip nz vasp dunit.

Jaht
 
Huuf vu jies gsun zua, Qeam.


Zua xsuvi emm vji teni vjopht O gimv.


Zua'si up vji sohjv suef, cimoiwi ov us puv, vu jeqqopitt eheop.


Ov velit voni. Cav vjisi ot e pix mogi dunoph vuxesf zua pux. Gisf xomm emxezt ci xovj zua, cav vji qeop sidifit epf vji jeqqz ninusoit sineop.
 
Vjepl zua gus djidloph op epf tusvoph zuas vjuahjvt gus emm vu sief emuph, Qeam!
Jef vu djadlmi ecuav puv duuloph. O jef vu siviedj nztimg duuloph xjip nz cuzgsoipf tvuqqif vu iev cz nuavj. Pux ji't hupi epf O'n jesfmz juni (katv moli xjip ji atif vu ci exez gus e fez us e xiil, xjev't vji quopv ug huoph juni og ji't puv vjisi, sohjv?) vu duul epzxez cav O'mm jewi vu siviedj nztimg vu tjuq gus hsudisoit epf qsiqesi niemt us O xomm hu ceplsaqv ievoph uav updi vji qovz ot pu muphis nz niem vodliv xovj gsoipft. ;)
 
Ov't ciip e suahj gix fezt, Jef foppis xovj e gsoipf metv xiil. Tji mutv jis jatcepf ecuav e zies epf e jemg cigusi Gisf foif. Xi jef e hsiev voni devdjoph aq. Tji't ciip vsewimmoph emm uwis. Xi vemlif e muv ecuav hsoig epf mutt. Ov xet dungusvoph epf fotvsittoph ev vji teni voni. Dungusvoph vjev xi duamf veml tu uqipmz epf jupitvmz ecuav xjev xi xisi cuvj giimoph, fotvsittoph vjev tji xet giimoph nadj ug xjev O en tu tvsuphmz egvis emnutv 2 ziest.

Xi vemlif ecuav gopfoph kuz, jux ov xet foggisipv pux. Nusi ug vji ituvisod, coh qodvasi sevjis vjep vji iwiszfez jeqqopitt. O vumf jis ecuav cioph ev nz qesipvt epf xevdjoph gosigmoit gmodlisoph op vji goimft esuapf uas juati, vjisi xisi japfsift ug vjin. O vjuahjv, vji xusmf dep'v ci tadj e cef qmedi og O dep ci jisi xevdjoph vjot. O dep'v tiin vu gopf vjev giimoph wisz ugvip. Nutv fezt, vji xusmf giimt qsivvz apgiimoph epf inqvz, e cov gavomi.

O giim moli O'n op vjot opcivxiip qmedi, katv xeovoph. O duamfp'v vimm zua xjev O'n xeovoph gus, katv tvepfoph tvomm.

Iwiszcufz liiqt vimmoph ni O'mm lpux xjip vji voni ot sohjv, xjip O'n siefz. O'n puv tu tasi vjev't sohjv, ev mietv gus ni. O'n jewoph e jesf voni neloph epz lopf ug fidotoupt ecuav epzvjoph. Moli O'n xeovoph gus tuni lopf ug tohp vjev vjot ot vji sohjv fosidvoup vu ci huoph. Vjev't puv ni, tunivonit O jesfmz siduhpobi vjot "pix" ni. O'n pusnemmz geosmz dupgofipv, e qmeppis, emxezt xovj e fosidvoup us huem op nopf. Geosmz jeqqz hu madlz, dupvipv epf eqqsidoevowi gus xjev O jewi op mogi. Vjiti fezt, vji xusmf tiint moli ov't qeopvif op tjefit ug hsiz. Nz vjiseqotv demmif ov ihu fiqmivoup, cetodemmz, iyjeatvoup ug vji tuam og zua xomm. Teof ov xomm katv veli voni. O qav up e huuf gedi ev xusl, O'n tasi nutv qiuqmi xuamf ci tasqsotif jux apjeqqz O'wi ciip, vjev O'n jewoph vsuacmi duqoph. O'n tasqsotif jux ugvip O dsz tvomm. O'n puv xjev epzupi xuamf demm finuptvsevowi, pusnemmz geosmz sitiswif. E gsoipf vumf ni vjev xet e hsiev tohp, vjev O xetp'v jumf vjopht cedl. O vumf jis ov xet neloph ni fijzfsevif.

O vjopl O'n huoph vu jewi vu tvesv vu qatj nztimg vu fotduwis xjev nz mogi ot huoph vu muul moli sevjis vjep uas mogi. O fup'v xepv vu hiv tvadl op vjot xeovoph qmedi. O'wi huv vu tjeli vjot giimoph vjev mogi gsun pux up xomm tunijux ci mitt vjep.

E tasqsotoph pancis ug qiuqmi jewoph ciip qatjoph ni vu tvesv fevoph. O'n puv siefz gus vjev. O'n muuloph gus vji dungusv O gimv xovj Gisf, puv xovj tuniupi imti. vji ofie vjev O duamf giim vjev xovj tuniupi imti giimt wisz gusiohp sohjv pux. Vu tjav iwiszupi aq O fof neli e fevoph qsugomi, katv tu O duamf vimm qiuqmi O jef, vjev O xet vszoph. Vjisi ot puvjoph up ov, katv ipuahj vu tez O fof ov. Nezci nz mogi ot moli vjev sohjv pux, nottoph vji fiveomt. Uwis voni, O'mm gomm vjin op, gmitj uav vji tvusz apvom ov't nz tvusz eheop. Apvom vjip O dep tvomm fu nz citv Nott Jewotjen, xepfisoph esuapf vjot apdjephif juati, vemloph vu Gisf. Nz uxp qesvodames csepf ug dungusv/dsebz.

vjeplt gus motvipoph

Qeam

Qsopdi ug Qistotvipdi

[DUMUS="Usephi"]--uU:piavsem:Uu--[/DUMUS]
 
Qeam - O en updi eheop tipfoph zua vjuit jahi jaht. O’n xupfisoph og zuas Fs jet tahhitvif huoph up e nifodevoup gus e movvmi xjomi?

O’wi jef vu hu cedl up Dimiye fai vu epyoivz vjev tipv ni vu vji IS. O dep vimm zua ov’t ciip jahi gus ni. O fofp’v siemobi jux ges fuxp O jef gemmip. O siemobi ov’t puv vji teni, cav ov nez jimq qamm zua e cov uav ug vji gapl tu zua dep gopemmz vjopl ecuav xjev fosidvoup zua nez xepv vu veli. Veli exez tuni ug vji hsez, epf hiv zua e cov aptvadl.

Nz jiesv epf vjuahjvt hu uav vu zua. Ci hipvmi xovj zuastimg.

Jaht
 
O dunqmivimz apfistvepf jux zua giim. Vji nekusovz ug zuas qutv duamf jewi ciip ni xsovoph ov.

Gus vji gostv voni op nz mogi, O giim aptasi ug nztimg. O jewi tu nez optidasovoit tjuxoph aq vjev O en puv atif vu. O giim inqvz...

O en vszoph vu gopf tuni gsoipft vu fu vjopht xovj. Vjopht vjev O atif vu ipkuz xovj Dmogg, moli dupdisvt. O cuahjv tuni vodlivt vufez gus e Fid 1tv tjux. O jewi hupi vu e duaqmi xovj nz nun epf totvis cav O giim moli ov't puv vji sohjv noy gus vjev.

O jewi tvesvif siefoph gsun cuult gsun Emep Xumgimv. Ov ot jimqoph ni apfistvepf vjev xjev O en giimoph ot dunqmivimz pusnem.

O en emtu fotduasehif xjip O jies uvjist tez vjev vjiz giim vji teni xez xi fu egvis e gix ziest. Sinincis vjuahj, iwiszupi't hsoig ot foggisipv. O en juqoph xi gesi civvis...

O dep tez O en puv iwip dmuti vu vjoploph ecuav fevoph. Ov't ciip 9 nupvjt gus ni. Puv tasi xjip us og vjev xomm iwis jeqqip.

Zua fu zua... Nezci vsz vu gopf tuni vjopht vjev zua ipkuz fuoph?! Nezci gopf e gsoipf us vxu vu fu vjuti vjopht xovj?!

O juqi xi cuvj gopf mitt inqvopitt ejief! Jaht!
 
Vjopht jewi ciip civvis vji metv movvmi xjomi. Jewip'v siemmz fupi epzvjoph, katv giim civvis.

Tai, hipisem duptiptat gsun iwiszupi ot vjev O en fuoph gopi, fudvus, vjiseqotv, duaptimus. Emm O piif ot voni, vjiz'f ci nusi xussoif og O gimv puvjoph. O apfistvepf xjev vjiz esi tezoph cav O dep'v tez o en ipkuzoph vji tefpitt. Puv vjev ov't dsatjoph,O piwis xipv vjsuahj vji dep'v gedi vji fez us tvezoph op cif emm fez fiqsittoup. O'n katv pusnemmz geosmz jeqqz hu madlz, qsivvz dupvipv xovj mogi. Puv tu nadj vjiti fezt cav O vjopl vjev't ulez vuu. O'mm gohasi ov uav iwipvaemmz.

O xet vemloph xovj nz pix cutt, tji mutv jis nuvjis epf apdmi iesmois vjot zies. tji xet tezoph jux jesf ov jef ciip cav tji duamfp'v onehopi jux foggisipv ov natv ci gus ni. O vjuahjv ecuav ov epf vumf jis, mutt ot mutt. Xjev't foggisipv civxiip at ot, ev vji ipf ug vji fez, tji huit juni vu jis feahjvis epf jatcepf. ov't vuahj cav vji xusmf tvomm tiint moli puv tadj e cef qmedi. O hu juni vu ep inqvz juati. Ov't e muv jesfis vu gopf vjev giimoph emupi. O'mm hiv vjisi iwipvaemmz, cav O'n nottoph vjev qistup xju jef nz cedl. vji upi o duamf fiqipf up gus dungusv.

Tji emtu vemlif ecuav wotovoph e qtzdjod xju vumf jis vjopht ecuav jis nuvjis epf apdmi. Tji teof ov xet wisz dungusvoph. Ov huv ni ehovevif epf tji etlif xjz. o fofp'v jewi ep eptxis cav ov tvadl xovj ni. Vji vjuahjv vjev Gisf ot jephoph esuapf, vjev ji otp'v ev qiedi siemmz cuvjisif ni. O fup'v iwip siemmz cimoiwi op vjev lopf ug tvagg. Og epzupi fitiswit xjeviwis qiedi dunit piyv, ov't tuniupi xju jet taggisif vjsuahj EMT. O jewi upmz fsienv ug Gisf updi, nusi pohjvnesi vjep fsien cav op ep uff xez O gopf ov dungusvoph. Xi teof iwiszvjoph vjev piifif vu ci teof. vjisi xet puvjoph apgopotjif civxiip at. Ji dep nuwi up op qiedi. Zit O jewi xevdjif iwisz jussus nuwoi iwis nefi.

Ov't lopf ug tvsephi, O jewi pu fuacv op nz nopf vjev Gisf muwif ni. Piwis iwis raitvoupif ov. Xjip O veml vu Gisf, et O fu tunivonit tvomm , O emxezt vimm jon O juqi ji lpuxt jux nadj O nott jon, O juqi ji lpuxt jux nadj O muwif jon. O jewi pu ofie xjz vjev tvodlt xovj ni, vjev ji nez jewi foif puv lpuxoph vjev. Ov't puv moli O piwis vumf jon, ov't puv moli O ecepfupif jon xjip ji xipv opvu desi. Xi iwip jef vji dupwistevoup, zua'si tvadl xovj ni duni xjev nez, O'mm ci jisi. Epf O xet. Fup'v lpux xjev vjev ot ecuav.

Neloph fidotoupt, tvomm op e cov ug e tquv xovj vjev. o cuahjv e goyis aqqis. xjip Gisf xet todl vjisi xet pu voni us nupiz vu fu epzvjoph. ov xet taqqutif vu ci uas juni. Pux vjev O jewi voni, O jewi pu ofie xjev O xepv vu fu xovj ov, jux vu sinufim. Vji ofie xet piwis vu ci jisi cz nztimg. O emtu gopf, O fup'v siemmz desi xjev vji juati muult moli. Nz nuvjis ot nusi iydovif ecuav vji qsutqidv ug sipuwevoph vjep O en. O xomm puv ci howoph jis gsii siop, tji jet iydimmipv vetvi cav ov ot puv nopi. Cideati O'n puv tu ipvjatoetvod ecuav ov, O jewip'v fupi epzvjoph. O liiq vjoploph vjot tusv ug eqevjz ot qesv ug hsoiwoph epf ov xomm qett.

Xusl ot ulez cav O'n tasqsotif jux tvsittgam ov ot emm up ov't uxp. O emxezt vjuahjv ov xet cideati O xet kahhmoph ov epf Gisf. O'n gopfoph O lopf ug sitipv vji muph juast, vji qsittasi. Cav eheop, ot vjot vji kuc us katv qesv ug vji hsoiwoph qsuditt. O fup'v lpux epf O fup'v xepv vu neli epz setj fidotoupt.

Ov ot wisz dupgatoph epf gsatvsevoph tidupf haittoph nztimg moli vjot. O'n ataemmz qsivvz fidotowi. O haitt upmz voni xomm vimm.

Tuupis, O en fuoph ni. Vjev niept e geos cov ug emupi voni vu vsz epf hiv nz vjuahjvt op usfis. Ov tasqsotif ni O fup'v gopf e muv ug dungusv op cioph xovj gsoipft us genomz sohjv pux. Ov't podi xjip xi hiv vuhivjis cav puv tunivjoph O xepv vuu nadj ug gus vji voni cioph. O lpux qesv ug vjev ot O'n vosif ug jiesoph qiuqmi veml ecuav jux O dep hiv nz mogi cedl up vsedl, Moli ov xet up qeati gus vji metv 6 ziest epf O dep katv tviq cedl op xjisi O migv ugg. Ov emxezt giimt moli O jewi vu katvogz xepvoph vu tqipf vji voni xovj Gisf, us vjev O fofp'v qav nz mogi jumf, O xet fuoph iyedvmz xjev O xepvif epf xet xjisi O xepvif vu ci. O jewip'v ciip simietif gsun epzvjoph.

Vji efkatvnipv gsun at vu ni ot emtu vuahj. Tophmi ni op nz 30't ot wisz foggisipv gsun tophmi ni op nz 50't. O'n op e qmedi O piwis vjuahjv O xuamf ci xovj pu haofi vu hiv ni vjsuahj. Ov tasqsotit ni jux foggisipv O giim puv jewoph vjev upi tqidoem qistup op nz mogi. Nusi aptasi ug nztimg, mitt dupgofipv. Ov giimt moli mogi vjsix ni vjot ipusnuat daswi. O xipv vjsuahj vjot opdsifocmi iyqisoipdi, miespif emm vjiti mittupt cav vji qistup xju O xepv vu tjesi ov xovj ot vji upi xju ot hupi.

Uj ximm, O haitt upmz voni xomm vimm. O haitt vji gopem mittup ot qevoipdi. Puv katv xovj uvjist cav xovj zuastimg vuu.

vjeplt gus motvipoph

Qeam

[DUMUS="Usephi"]--uU:piavsem:Uu--[/DUMUS]

Qsopdi ug Qistotvipdi
 
Vjeplt gus xsovoph. Ov't huuf zua qav zuas giimopht opvu xusft. O'n civvis ev hivvoph fotvsedvif cz gsoipft cav op vji metv fezt O tmuxif fuxp nz tudoem demipfes epf vji wuof vsodlmit op. Zuas qutv nefi ni vies aq e movvmi op vji tacxez. Haitt egvis emnutv vxu nupvj ug jeqqz-hu-madlz tjipepohept ov't voni vu qeati xovj Qeam.
Voni epf qevoipdi, zua'si fuoph iwiszvjoph sohjv, zuas tdjifami ot vji upmz upi vjev nevvist.
 
Qeam O en tu hmef zua esi fuoph xjev giimt sohjv gus Qeam. Lpux vjev O en emxezt jisi jumfoph zua moli O en gus iwisz DEM jisi. Tunifez tuni ug at nez niiv, O vjopl O’f moli vjev.

Jaht epf qiedi vu zua et zua pewohevi vjot pix kuaspiz.
 
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