from uk-build

[Me ansome]

Hi all,

i'm new Here i Hope you don't mind me posting on your forum some on Here know me already from build-uk.

my name is wayne i'm 42yrs old i live in cornwall,united kingdom in a small village called st.merryn.
i was diagnosed in 1998 but Had symptoms at least 2-3 before tHat, i'm in a wHeelcHair Have been for 2.5yrs because of one to many falls tHe last resulted in me being impailed by my Head on tHe edge of our central Heating radiator witH 6 paramedics in attendance because of suspected broken neck (xrays remain undecided) but i escaped witH just a 5 incH gasH wHicH was glued waffle waffle.....

any way tHe words i wrote about guilt seem to Have been mis-interpreted!.

i do not feel guilty for Having mnd/als and no one sHould at all never.

wHat i do feel guilty for is my selfisHness and demands i put upon my wife and How Her life Has totally cHanged and not for tHe better.

yes guilt is tHe rigHt word for my feelings towards Her life not my life, for i can not say 100% tHat if tHe boot was on tHe otHer foot i would be Here supporting caring for Her as sHe does for me.

 

[Timshelper]

With all the compassion and the conviction you put in your note i cant believe that you would feel the the same and do the things for wife should she be ill. you are obviously and totally in love With your wife or you wouldnt feel this way either ie (guilt). i dont think youd be selfish especially With als as it brings cals closer to their loved ones from the beginning.time is such a factor you get drawn into it so fast before it just becomes second nature.sure everyones life who is involved does have transition but you have enough to worry about every day then to have to put guilt on your plate too. a lot will say gee i dont know what i do if i was in that position and some people will never have to figure this out. you dont know until it happens to you then Without a thought you begin the journey and you except it, you learn from it and you grow.this forum has showed me through strength and love is what als brings out in people. ironic isnt it?
kim
als about loving someone

 

[TBear]

Hi wayne:
welcome to our little group. wHat you wrote is good because it came from tHe Heart... and good literature!
i tHink tHat most of us caregivers feel our own guilt about a partner Having to deal witH mnd/als and all tHat goes witH it. i know tHat i felt guilty simply because i was rationalizing my involvement by tHinking " better you tHan me!". if tHe sHoe was on tHe otHer foot, you would likely be able to muster up tHe ability to do everytHig tHat your wife is doing for you now. i know tHat i never tHougHt tHat i'd be able to do it... but i did.
stick around... i just returned from merry olde england and Had a great time... wHo would Have tHougHt tHat i could be tHere for 10 days and only Have one day of rain!
t.

 

[mannco74]

the poem

Was written by a friend on uk build. i though it capured my feelings at the time and wished to share the poem. i wud like to share your point of view however it is not possible at times. has nothing to do with religious guilt. has to do with my being able to do nothing, she does everything. she gives me my morphine at night, dress my in morning, hoist me into my chair and brings me to the computer. sometime we suction my lungs 5 times a day. i type with one finger but not before she lifts them up and puts them on a pillow..here is what i give..i can get very cross with her, we are quickly using our retirement savings. she needed to take an 80 k mortgage so i would have a better quaity of life. now my pension has been allowed to be reduced by the gov. so she gets to go look for a job after.. i know it is not my fault but show me a pals that has not felt guilt and i will show you someone with some mental challenges. all over one poem written by a person that Wanted to express himself
http://ranger03.com
go to my journal

 

[PALS Mike]

To be clear...

my feelings of guilT are fleeTing and few and far beTween.
buT They do surface from Time To Time.

i always focus on The posiTive and Try To help oThers see The benefiTs of Thinking The same way.
if someone can undersTand whaT (and why) i'm feeling in a parTicular momenT...
iT makes coping ThaT much easier.
as dr. phil says...
"you can'T change whaT you don'T acknowledge."

we all have someThing To give and share wiTh oThers.
for me, iT's my creaTiviTy and humour...
for oThers, iT's Their emoTions, Their wisdom, Their personal sTories.

i believe iT's why we all acTively parTicipaTe in These forums.

 

[Al]

Well i think we have flogged this horse to death. show us your humor mike. make us laugh.

 

[me]

You're right al, this horse has had it's day! i'm glad it was brought up though. after reading everything, i'm wondering if "regret" is a better word than "guilt", at least for some of the things.

carol, so glad you were able to join in on this discussion. that sounds wonderful to get to your trailer! i plan to get out gardening too. well, gotta go for now. i'm at work and they are needing me for stuff.

melissa

 

[Me ansome]

From a "dead horse" to the world i have no regrets not one.

my life has been wonderfull and i have no qualms about how i have lived it.

i'm glad mannco74 posted this thread, i'm also glad you have read and debated my words but saddened about the way it's been read and disected to the extent it has now become totally meaningless even to those who have a common bond in which the words meant so much and find it hard to express theirselves in this way.

if my posting on this "dead horse" again offends i apologise but when i have received emails From all around the globe thanking me for expressing my thoughts in this way and how it shows their true feelings towards their husbands, wives etc etc then i do feel justified posting this re-buttle.

remember it's not how much you breath in life but how much you breath life into it.

 

[Timshelper]

Dear me ansome,
i am sorry if your offended by what was said on this forum but they are just opinions on how others feel. this is the place to let all your feelings out and sometimes there will be others who do not agree. you are entitled to your feelings and if this is the way you feel no one is trying to take that away from you and it proably shouldnt of become such a debate but their are people on this forum that are going through the same things you are and have been where your wife is. as far as what is life who really knows the answer but to some its what you make of it and i've seen more happy people with terminal diseases because they realize how precious it is while others who never have to experience it, take it for granted. this isnt a Dead horse because it came from your heart and none of us want to take away something from someone if it means that much to them. your wife is a lucky woman because you love her that much to think you have to feel guilty because you were stricken with this terrible disease. i think one day god will change your mind and you will have new feelings so you can be released from this.
kim
als about loving someone

 

[Al]

Ok maybe a dead hOrse is nOt the prOper terminOlOgy i was lOOking fOr. sOme gOOd pOints were raised and sOme different pOints Of view were expressed. that is the wOnderful thing abOut this disease. it is as different between peOple as peOple are. we are all different but similar. we all have emOtiOns and they are strained by this als thing. what i was trying tO dO was tO get everyOne back intO the sand bOx and thinking happy thOughts again. try tO stay pOsitive gang. it's a lOng tOugh rOad. well maybe nOt lOng but tOugh. keep smiling.

 

[Al]

What the heck is with my o's. i never have trouble with my o's. this is outrageous. i'm complaining to the manager.

 

[Timshelper]

Hi al,
i'm going to cHeck and see if my o's come out like yours and if tHey are we will botH go tHe manager. oH ,oH Here we go,
kim

 

[Timshelper]

Well no problem wit the o's just the h's weird like the twilight zone or something. maybe its because you lost and hour in the time change.
kim

 

[Al]

We lost an hour ? Where? What you talkin bout? Who took it?

 

[Timshelper]

Well i sure didnt ,we stay the same all the time. i think you used to be 2 hours a head of us here in good ol saskatchewan now with the time change i think you lost an hour i know theresa did or have i got it wrong and you gained one either way you still have screwed up o's or you did. i told you its the twilight zone.its like that old saying who stole the cookie from the cookie jar was you number one? who me couldnt be then who stole the cookie from the cookie jar?al ask a freind?
kim