14 replies to this topic

[hopelesslydevoted]

Iv been married to my husband for 2 years (we've known each other for 4 years) and the hardest part is that we dont go anywhere. We met when I was travelling for my job as a nurse in San Diego and then moved to indiana a year later where his dad and brother live, but We've been here for 3 years now and things are at a stand still socially. Iv met 2 other women with paralyzed husbands who were very open to going out as couples but my husband refuses to be around other disabled people. (those women seemed to have no interest just being my friend). He's been hurt now for 6 years and I dont think this will ever change. I guess I can accept this, he says "i already have my own friends I dont need new ones". Im just complaining I guess b/c I have yet to find real friends I can spend time with. Besides feeling isolated there are other problems we have related to the disability that can be a challenge- some worse then others. Some days are wonderful and others are not so much. can anybody relate?

[Myssa]

 hopelesslydevoted, on Oct 23 2009, 06:35 PM, said:

Iv been married to my husband for 2 years (we've known each other for 4 years) and the hardest part is that we dont go anywhere. We met when I was travelling for my job as a nurse in San Diego and then moved to indiana a year later where his dad and brother live, but We've been here for 3 years now and things are at a stand still socially. Iv met 2 other women with paralyzed husbands who were very open to going out as couples but my husband refuses to be around other disabled people. (those women seemed to have no interest just being my friend). He's been hurt now for 6 years and I dont think this will ever change. I guess I can accept this, he says "i already have my own friends I dont need new ones". Im just complaining I guess b/c I have yet to find real friends I can spend time with. Besides feeling isolated there are other problems we have related to the disability that can be a challenge- some worse then others. Some days are wonderful and others are not so much. can anybody relate?

I can relate with you somewhat, somedays Brady will come out with me with no problems and some days I need to bribe him(just like our kids). You're husband sounds like Brady on not wanting new friends, when he was in rehab he bearly spoke to anyone and the few he did speak to he lost touch with as soon as he got home. He say's he has all the friends he needs. I more so feel isolated because most of my friends left me as soon as he was hurt.

[MaggieT]

hi
we never go out, we went out to a bar like 4 times in the last 7 years, i know no other woman in halifax N.S thats with a guy in a wheelchair, there us a high chance that there is i just never looked lol, all his friends are my friends, even though im not fond of half of them......don't tell anyone...lol, but yeah, i know what its like, at 1st i was upset about it but now i don't care, i love spending all my time with him, and the more alone time the better!!
there is a lot that we can do but we are so cheap with our money..
the best is the movies, i get in for free, he pays and i don't, love that!
i miss all my friends from home, but i have Facebook to keep up with them, i think i also don't mind so much now cause here in the city, going to the bars means there will be a fight, like to stay away from that myself..lol
you will find someone that will be your frined........for real
might find them on here!!

[hopelesslydevoted]

 MaggieT, on Oct 24 2009, 05:46 PM, said:

hi
we never go out, we went out to a bar like 4 times in the last 7 years, i know no other woman in halifax N.S thats with a guy in a wheelchair, there us a high chance that there is i just never looked lol, all his friends are my friends, even though im not fond of half of them......don't tell anyone...lol, but yeah, i know what its like, at 1st i was upset about it but now i don't care, i love spending all my time with him, and the more alone time the better!!
there is a lot that we can do but we are so cheap with our money.. :D
the best is the movies, i get in for free, he pays and i don't, love that!
i miss all my friends from home, but i have Facebook to keep up with them, i think i also don't mind so much now cause here in the city, going to the bars means there will be a fight, like to stay away from that myself..lol
you will find someone that will be your frined........for real
might find them on here!! :)

thanks for the optimism! It always helps to hear someone can relate with you especailly when so many cant- which is understandable. Its usually ok b/c I am a homebody as well -but when months go by and we have nothing but his friends or his brother over it gets pretty sad. When we lived in san Diego CA there was more to do and we went out alittle more but he gets angry when people look at him and also he has chronic pain so I feel for him, we are pretty cheap with our money as well. I am happy to say that we will be having a baby in a couple of weeks- thanks to IVF! But not having my close friends and family here is a sacrifice on my part. Sacrificing is fine in a marriage- I guess it comes with the deal. Things will get better- Im just in a rut. Where did u say you were from? I never heard of halifax N.S- i'll have to look it up. Im sure You'll see me again on here. Thanks again :)

[hopelesslydevoted]

 Myssa, on Oct 23 2009, 11:15 PM, said:

 hopelesslydevoted, on Oct 23 2009, 06:35 PM, said:

Iv been married to my husband for 2 years (we've known each other for 4 years) and the hardest part is that we dont go anywhere. We met when I was travelling for my job as a nurse in San Diego and then moved to indiana a year later where his dad and brother live, but We've been here for 3 years now and things are at a stand still socially. Iv met 2 other women with paralyzed husbands who were very open to going out as couples but my husband refuses to be around other disabled people. (those women seemed to have no interest just being my friend). He's been hurt now for 6 years and I dont think this will ever change. I guess I can accept this, he says "i already have my own friends I dont need new ones". Im just complaining I guess b/c I have yet to find real friends I can spend time with. Besides feeling isolated there are other problems we have related to the disability that can be a challenge- some worse then others. Some days are wonderful and others are not so much. can anybody relate?

I can relate with you somewhat, somedays Brady will come out with me with no problems and some days I need to bribe him(just like our kids). You're husband sounds like Brady on not wanting new friends, when he was in rehab he bearly spoke to anyone and the few he did speak to he lost touch with as soon as he got home. He say's he has all the friends he needs. I more so feel isolated because most of my friends left me as soon as he was hurt.

Thats pretty crappy that your friends actually left you because of what happened. people can be really shallow. The friends I do have from back home dont really understand but they are still there. Thank you for the reply. This site is great for support. Iv been needing some type of support group for some time and it seems like the people here are great. Thanks again.

[blue eyes]

tell him that you are lonely and that you don't want to go out with these other wives of parelyzed men to benefit him but to benefit yourself. tell him you need friends of your own to have girl talk with and you wish he would partake in couple activities. i would say that telling him this is for you and not him and telling him how you feel is the best thing to do. if still no budging then like you said, in marriage sometimes you have to comprimise. in my own experience though, i would go crazy over time with no girlfriends to talk to. perhaps you can just have girl time.

[newwife08]

Yes, I really do know what it's like. My husband likes to go out, but he only wants it to be the two of us. He has a few close friends, but he talks to them more on the phone than he sees them.

The issue that I have been having is that (especially lately) I keep getting compliments about what an angel I am for marrying someone like him. I never know what to say, so I just say thank you. However; it's like I'm not me. I'm just that quads wife.

Everything I do is for him. We've only been together for 3 years, and married for one of them. He has been through two major surgeries in the last two years, and in fact, just returned home from the rehab center yesterday. I feel like I'm loosing my identity as a person. I mean, I know I'm a great person and that there aren't many women who would mary someone like my husband, but I'm still a person. I am still myself. Or am I?

I hardly ever see my friends, because I feel like I have to be here for him. He makes me feel bad whenever I tell him that I want to go out. I just don't understand it! I know that I should just tell him how I feel, but I don't really know how. I don't want to make him feel bad.

[luvmyc5]

I can relate to what everyone on this thread has said.LOL.

My bf rarely wanted to go out of the neighborhood,BUT he knew that I got bored sitting in the house all the time. We get on the bus and go places or I will have someone put him in the car and we will go for a ride and usually end up at the beach.

He prefers to hang out at home with his associates. He doesnt hang out with other paralyzed ppl unless he is at the Dr ofc.

I love my booh so much but I have never felt pity for him because of his paralysis. I understand that its something very hard to deal with since its only been 2 yrs for him. But I will not stay locked in the house or tolerate any other form of abuse because of his paralysis. He was used to ppl feeling sorry for him and treating ppl like crap because he is paralyzed and he thought ppl had to deal with it.

We have a really good relationship because we communicate. We tell each other our dislikes and likes and the things we are looking for in a relationship. We are both very outspoken ppl so that helps too.

[RyansWife]

 hopelesslydevoted, on Oct 23 2009, 05:35 PM, said:

Iv been married to my husband for 2 years (we've known each other for 4 years) and the hardest part is that we dont go anywhere. We met when I was travelling for my job as a nurse in San Diego and then moved to indiana a year later where his dad and brother live, but We've been here for 3 years now and things are at a stand still socially. Iv met 2 other women with paralyzed husbands who were very open to going out as couples but my husband refuses to be around other disabled people. (those women seemed to have no interest just being my friend). He's been hurt now for 6 years and I dont think this will ever change. I guess I can accept this, he says "i already have my own friends I dont need new ones". Im just complaining I guess b/c I have yet to find real friends I can spend time with. Besides feeling isolated there are other problems we have related to the disability that can be a challenge- some worse then others. Some days are wonderful and others are not so much. can anybody relate?

I have been reading here for awhile and your post just prompted me to make an account. I live right near Floyds Knobs, IN. I'm not sure how to contact people through here but I made it so that people can email me, please feel free to do so. My husband is newly injured (August 7, 2009) and we have just recently left the hospital and rehab and are now adjusting to our new life at home.

I hope to hear from you!

[sciwife]

 hopelesslydevoted, on Oct 23 2009, 11:35 PM, said:

Iv been married to my husband for 2 years (we've known each other for 4 years) and the hardest part is that we dont go anywhere. We met when I was travelling for my job as a nurse in San Diego and then moved to indiana a year later where his dad and brother live, but We've been here for 3 years now and things are at a stand still socially. Iv met 2 other women with paralyzed husbands who were very open to going out as couples but my husband refuses to be around other disabled people. (those women seemed to have no interest just being my friend). He's been hurt now for 6 years and I dont think this will ever change. I guess I can accept this, he says "i already have my own friends I dont need new ones". Im just complaining I guess b/c I have yet to find real friends I can spend time with. Besides feeling isolated there are other problems we have related to the disability that can be a challenge- some worse then others. Some days are wonderful and others are not so much. can anybody relate?

I can TOTALLY relate! My husband has been in a chair for 22 yrs, and we have been married for 12. I almost had a breakdown last weekend because it seems like we don't go anywhere anymore! Although I DO understand where he is coming from, it's just a pain in the ass for him to get set up to go...but I am not disabled, and I am a total outdoor person. When I occasionally want to do something with a friend, he makes me feel guilty for leaving. I have no friends who are in the same position as us, so nobody really "gets it." What makes it even harder, is that his friends all live where he grew up, about 13 hours away from here. He doesn't work, so he is always home, and always has sex on his mind. I am SO GLAD that we can still have sex, but that isn't what I want to do ALL the time, especially when I work all day. He is truly an amazing man, I love him with all my heart, but I NEED to have some sort of life outside of sitting at home all day!
You are right about one thing...it won't ever change, and it will probably only get worse. I say that only because I have seen my husband go from being pretty active to hardly at all. Their body continues to break down over time, more aches and pains, and the mental stuff that goes with it all. And MY husband takes extremely good care of himself!
Having said that, no matter what, I am in it for the long haul. I promised him for better or worse and I meant it.
I wish you the best of luck. It is for sure a challenge and very depressing at times, but remember...it is probably double that for him too.

[Slowlegs]

Hi,
from the point of view of someone who has had a caregiver, the things a lot of caregivers up does make you all angels. The thing is, you need time out otherwise it becomes a full time job or a life sentence and eventually burn out.

So your partners don't want to feel awkward going out? Well I suppose we all have to get over those awkward moments and adjust to how we now are. I am sure the first time most caregivers changed a catheter bag or did a bowel program they probably felt a little awkward too. There are adjustments on both sides. Granted, a lot of SCI's don't and won't live a completely "normal" life because that's the nature of the beast. We just have to work on making what we have the new normal. If that means venturing out in public and facing a few stares - well that is what has to happen.

The awkwardness some feel usually comes from the one being stared at, not the one doing the staring. People are always going to do it so get used to it. Otherwise, seek some counselling and get over it.

[guido]

I always think it a terrible waste when one person restricts another in a relationship, and whilst there is compromise and sacrifice in a good relationship, there should also be generosity.

I'm a para, and my girlfriend is AB. There is stuff I loved doing but can't anymore, but I'd be mortified if I stopped her going out with friends to do something just because I can't.

Sometimes I think you girls can be just too good and self-sacrificing for your own good. If your fella is sulking because he can't do something, at some point (before you waste any more good years) he is gonna have to learn to deal with it or risk losing you. If it were me, I'd give him the option to come with and do my thing, or stay put while I do my thing.

Guilt is a an outrageous waste of energy and emotion, and about the most destructive force there is.

Tough love, girls... for everyone's sake, for your own deserved happiness: learn to do it, and seek the benefits.

[greybeard]

I don't mean this in an unkind way, but ladies are more likely to be found chatting to other ladies, whether they know them or not. It's a compulsive genetic thing. This is not something that many men feel the need to do.

So, ladies, leave the fellas at home and get out and get all that talking out of your systems away from the house. Your men will probably be mightily grateful - even if they do huff and puff a bit. (Got to keep up appearances )

Edited by greybeard, 19 November 2009 - 08:29 AM.

[Becca82]

why not use this site for your 'friends who understand' and just make friends with peope who you like because they are nice people, rather than only being buddes with them because they 'know what its like for you'?
its a strange thing, we dont have any disabled friends or friends who have disabled partners but i cant say that it bothers me in the slightest....its not like if you were a teacher all your friends have to be teachers so they understand what your life is like!
a friend should be someone that you enjoy spending time with...the better you get to know them, an the more they becoma a part of your life then the more they will understand about how things are for you!
some of the others are so right, if your hubby doesnt want to go out that shouldnt stop you!
my 'thing' is the gym...i go off to my classes and have people i know etc but its my thing, i get to have an hour out, and do something for myself, and meet people!
its good for both of us!
we have been together for 5 years, and spend pretty much 24 hours a day together...we both have friends who we were at school with etc, that still live close by, so we go out to the pub for lunch or meet them for a pub quiz etc, but neither of us have ever felt the need to seek out other disabled people, just because they are disabled.
find something your interested in and get out and meet people, even if its only an hour a week, it will make you feel better....dont search for something that might not even make your life better..just because you meet another carer of a disbaled person, doesnt necessarily mean they feel the same way about their life as you do about yours.....it might even make you feel worse if they seem to be coping better, or enjoy their life more or their husband does stuff yours ant etc!!!
the grass is not always greener!!!
good luck with finding your own happiness!
xx

[kjm465]

I laughed when I say this thread because this is something that comes up in our marriage over and over! :-) My husband is C6-7 and we have been married almost 2 years now. I work in theatre so my schedule is all over the place and I'll often have meetings outside of regular work hours. I love my job, but recognize that the schedule can be hard on him, because he really enjoys being at home: cooking, watching movies, etc. ...and I love to go out and DO stuff.

We started doing 2 things that really seem to help:

1) We schedule "dates" at least once a week, usually 2-3 times/week. These dates are usually informal...we might go grocery shopping together or watch TV or cook dinner or go to the gym...but with our hectic schedules (mostly mine to be fair!) it forces us to spend time together. We also have a rule that neither of us can schedule anything on a Sunday without talking to the other one first. Sometimes stuff comes up, and that's fine...but by and large that's the one day we know we'll spend time together. I know he appreciates me scheduling time for him, and it makes for WAY less arguments when I'm scheduling time for stuff with other people.

2) We keep a calendar on the fridge (ours is a dry-erase but it doesn't really matter) and we put all our activities (including work!) on there. It helps us to manage our time together, and makes it much more clear where we're spending our time. We're also less likely to forget to do the things we scheduled.

I hope this helps!
KJM