Re: I feel alone (((Kolleen)))

[Guest guest]

Kolleen ....Get a husband substitue! LOL! No seriously..you have

us. You are not alone.

My experience in the dh (dear hubby) department isn't much better,

I'm afraid. Actually it was worse. I am on my own these days.

However, it doesn't mean the same thing will happen for you. You

have to just change the way you look at it. I agree with the ohter

posters to give him the literature. However, some people will not

research or read no matter what you do. Try not to focus on his

reaction to your condition if it happens to be negative. I know

everywhere we went nurses and others would thank him for staying

with me which in turn made him feel he was doing me a favor and

caused more of a drift between us. I wished they woud just stop

trying to help me. In dh's case he just ran away whenever there was

a problem or blamed me or got depressed or compared me to healthy

people or all of these things at once, in turn I would become down

about our life together all while fighting for my freedom and life

from RA. In addition, I was basically raising our developmentally

delayed child alone. We lost her 3 years ago but for 11 years she

was being cared for by me most of the time plus I continued to work

and care for her. i had to be everything because dh could not

handle the stress of a disabled child (seizures, medications, appts,

etc.) and wife's illness. I still continue to work and provide a

living for myself and will do so always if God's willing just

looking now to train for something disabled people can do.

I think every situation is different so will yours be. We don't

know how " trainable " your dh is or not. He probably doesn't even

know himself. Things that make it easier are if he adore you and

bonded with you before he married you when you were healthy, then he

will most likely adore you now even though he may become depressed

about it. What was his plan B if you got sick and was no longer

able to wait on him or does he help out around the house. What if he

had to go without intimacy for a prolonged period of time could he

handle that or does he put his needs before yours. Maybe that is a

good focal point for him, the more he helps you research the

condition the more chances for intimacy.. A lot of men are not

nurturers or caregivers, society taught them that it was a woman's

job and they happily accepted. But coming from a single mom

household I can't afford to buy into that way of thinking (and too

bad they did) or we would have starved to death waiting on a man to

provide for us. Of course there are many men who are nurturers and

providers and I want to be fair to them, some of the male nurturers

belong to this support group, and I hope you have one I really do or

to avoid conflict come here for that nurturing you need or places

like here. or your best friend or family. I am not sure what

triggers fight or flight response but many of us here experienced

spouses, friends, family with the flight response activated when

things don't go as planned (like fair-weather friends) they run

under stress. I like to fight the problem, attack it, I assumed

whoever I would be attracted to as a mate would be the same way and

was in for a rude awakening when that didn't happen. I don't think

saying men are this or that is something that should be applied to

all men in general because some men have taken on the caregiver role

with no problem but others struggle with that-- it is all

personality type. And make no mistake this condition is chronic and

needs a caregiver personality. It isn't going anywhere any time

soon. I would take him to the visits and encourage him to ask

questions that he wants answered and I would give him literature, i

would do my part but at the same time don't get depressed if the

outcome isn't what you expect, but my dh didn't read any of the

literature until 10 years later when I asked him why he didn't take

an interest in what was happening to me and my health, and to save

face he read some of the literature I gave him and still put his own

twist on it. It is all personality type. Don't expect him to be as

passionate about finding a cure as you are or going into remission

as you are. Do that on your own. Don't expect anything. But be

grateful if you get lucky with someone who actually is as passionate

about fighting the condition as you are. Let him know when you

need help with something if he is waiting on you to get it done like

doing the dishes, laundry, groceries, or cooking -- typical female

duties. Come here for nurturing or places like this, join a support

group at your hospital or check arthritis foundation for a support

group, talk to your friends if they didn't disappear like mine did,

talk to family if they are understanding but some of them can be

just as bad, if all else fails, hire a counselor talk to them that's

what they are there for and they can maybe coordinate you to places

to act as a husband substitute or what we expect for our husbands to

be anyway.

I really dislike seeing others go thru this. It is already

isolating to have this condition and then to be isolated from your

husband is even worse. I understand the loneliness that brings more

than I care to and why I don't want others to experience it. I too

have a fix it personality like the guys however, in me it manifests

by doing something about it not retreating into a cave so I don't

excuse guys for retreating. You can retreat for a short time to

regroup or brainstorm but I would like to see them tackle the

problem for as long as it takes just as you are having to do …for

better or worse, in sickness and health -- we would do it for them

if it were the other way around.

Wishing you the best… (hugs),

Ebony

[Guest guest]

Ebony,

I work with adults with developmental disabilities, maybe you could find

something like this as well.

-------------- Original message --------------

From: " Ebony " <stillbreathing29@...>

Kolleen ....Get a husband substitue! LOL! No seriously..you have

us. You are not alone.

My experience in the dh (dear hubby) department isn't much better,

I'm afraid. Actually it was worse. I am on my own these days.

However, it doesn't mean the same thing will happen for you. You

have to just change the way you look at it. I agree with the ohter

posters to give him the literature. However, some people will not

research or read no matter what you do. Try not to focus on his

reaction to your condition if it happens to be negative. I know

everywhere we went nurses and others would thank him for staying

with me which in turn made him feel he was doing me a favor and

caused more of a drift between us. I wished they woud just stop

trying to help me. In dh's case he just ran away whenever there was

a problem or blamed me or got depressed or compared me to healthy

people or all of these things at once, in turn I would become down

about our life together all while fighting for my freedom and life

from RA. In addition, I was basically raising our developmentally

delayed child alone. We lost her 3 years ago but for 11 years she

was being cared for by me most of the time plus I continued to work

and care for her. i had to be everything because dh could not

handle the stress of a disabled child (seizures, medications, appts,

etc.) and wife's illness. I still continue to work and provide a

living for myself and will do so always if God's willing just

looking now to train for something disabled people can do.

I think every situation is different so will yours be. We don't

know how " trainable " your dh is or not. He probably doesn't even

know himself. Things that make it easier are if he adore you and

bonded with you before he married you when you were healthy, then he

will most likely adore you now even though he may become depressed

about it. What was his plan B if you got sick and was no longer

able to wait on him or does he help out around the house. What if he

had to go without intimacy for a prolonged period of time could he

handle that or does he put his needs before yours. Maybe that is a

good focal point for him, the more he helps you research the

condition the more chances for intimacy.. A lot of men are not

nurturers or caregivers, society taught them that it was a woman's

job and they happily accepted. But coming from a single mom

household I can't afford to buy into that way of thinking (and too

bad they did) or we would have starved to death waiting on a man to

provide for us. Of course there are many men who are nurturers and

providers and I want to be fair to them, some of the male nurturers

belong to this support group, and I hope you have one I really do or

to avoid conflict come here for that nurturing you need or places

like here. or your best friend or family. I am not sure what

triggers fight or flight response but many of us here experienced

spouses, friends, family with the flight response activated when

things don't go as planned (like fair-weather friends) they run

under stress. I like to fight the problem, attack it, I assumed

whoever I would be attracted to as a mate would be the same way and

was in for a rude awakening when that didn't happen. I don't think

saying men are this or that is something that should be applied to

all men in general because some men have taken on the caregiver role

with no problem but others struggle with that-- it is all

personality type. And make no mistake this condition is chronic and

needs a caregiver personality. It isn't going anywhere any time

soon. I would take him to the visits and encourage him to ask

questions that he wants answered and I would give him literature, i

would do my part but at the same time don't get depressed if the

outcome isn't what you expect, but my dh didn't read any of the

literature until 10 years later when I asked him why he didn't take

an interest in what was happening to me and my health, and to save

face he read some of the literature I gave him and still put his own

twist on it. It is all personality type. Don't expect him to be as

passionate about finding a cure as you are or going into remission

as you are. Do that on your own. Don't expect anything. But be

grateful if you get lucky with someone who actually is as passionate

about fighting the condition as you are. Let him know when you

need help with something if he is waiting on you to get it done like

doing the dishes, laundry, groceries, or cooking -- typical female

duties. Come here for nurturing or places like this, join a support

group at your hospital or check arthritis foundation for a support

group, talk to your friends if they didn't disappear like mine did,

talk to family if they are understanding but some of them can be

just as bad, if all else fails, hire a counselor talk to them that's

what they are there for and they can maybe coordinate you to places

to act as a husband substitute or what we expect for our husbands to

be anyway.

I really dislike seeing others go thru this. It is already

isolating to have this condition and then to be isolated from your

husband is even worse. I understand the loneliness that brings more

than I care to and why I don't want others to experience it. I too

have a fix it personality like the guys however, in me it manifests

by doing something about it not retreating into a cave so I don't

excuse guys for retreating. You can retreat for a short time to

regroup or brainstorm but I would like to see them tackle the

problem for as long as it takes just as you are having to do …for

better or worse, in sickness and health -- we would do it for them

if it were the other way around.

Wishing you the best… (hugs),

Ebony