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I will try and keep this short and sweet.

 

Wife has multiple sclerosis, a chronic / progressive (but non terminal) disease. She has been in remission for the past 10 years, knock on wood, though she does have some limitations (she has to wear leg braces, can't walk for long distance, has reduced eyesight, can't stand the heat, and has chronic pain). Well, I knew all that when I married her, so I'm not complaining. We're both fairly sedentary so it's not terribly incompatible.

 

Now for problem #1. Although I said we were fairly sedentary, I do enjoy some outdoor activities in the summer. She feels like I am abandoning her if, say, I take a day trip to go kayaking a couple times a year. I know the disease sucks and all but am I asking too much here? Id love to do everything together but it's just not possible with her disease. So what is your take, am I a jerk for leaving her behind.

 

Problem #2 is a bit hairier. Because, partly of the above, and mostly other communication issues, I have begun seriously considering divorce. However I don't feel it is morally right because she is not able to take care of herself (when we met she was receiving disability but it is quite an ordeal to get, especially considering the assets she would obtain from a divorce settlement). I took the vows to stick through sickness and health, etc, and I take those very seriously, what still makes me hesitate though is the fact that it's not the disease causing the problem, it's the rest of her attitude. I am taking a middle road right now but we are getting more and more disconnected and I don't think it's sustainable for much longer, at some point I fear it will be reduced to a caretaker to patient relationship (although there is very little "caretaking" inside of the house but she is unable to drive so that makes her very dependent). Well I am not sure what I am looking for here really. Have you gone through the same and found that divorce ended up being more satisfying for both ends? Or would you rather advocate sticking through at all cost.

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whichwayisup

I think you need to go talk to someone about this, a therapist, because this is what you signed up for knowing she has MS from the get-go.

 

I"m sure this isn't easy on you, being caregiver and looking after her..Your other choice is, hire someone to help, a trained nurse..

 

Your wife also has to understand that your life can't stop, you need to do activities and have time for yourself. Nothing wrong with a few day trips going hiking or kayaking..This is something that she needs to work through.. Maybe counselling for both of you would help.

 

I don't suggest walking away and divorcing, bailing on her as life is changing and getting harder.. As I said, you knew this by marrying her that this could happen, albeit, further down the road, but still.. 10 years in, to divorce when she needs you most? Unless you don't love her anymore and do not want to be there for her, then divorce quickly and get her family involved because she's going to need help and lots of support, obviously living alone is going to be hell for her.

 

Don't make any decisions until you talk to a professional..On here we can give you advice but I wouldn't make hasty decisions based on what others here can say.

 

Keep posting.

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Duckduckgoose

Get counselling or therapy, and maybe also a daytime companion for her. Part of her attitude maybe her lonliness or how she is coping with the disease. She probably needs counselling too.

 

You said you knew she had MS from the get-go so you still jumped on the train knowing what you had to deal with. Divorce isn't going to solve problems for you, it's just going to complicate them, magnify them, and force you to deal with them... when you run the problems don't stay there, they follow you and wait for you when you get wore out and can't run anymore.

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blueroses10
I will try and keep this short and sweet.

 

Wife has multiple sclerosis, a chronic / progressive (but non terminal) disease. She has been in remission for the past 10 years, knock on wood, though she does have some limitations (she has to wear leg braces, can't walk for long distance, has reduced eyesight, can't stand the heat, and has chronic pain). Well, I knew all that when I married her, so I'm not complaining. We're both fairly sedentary so it's not terribly incompatible.

 

Now for problem #1. Although I said we were fairly sedentary, I do enjoy some outdoor activities in the summer. She feels like I am abandoning her if, say, I take a day trip to go kayaking a couple times a year. I know the disease sucks and all but am I asking too much here? Id love to do everything together but it's just not possible with her disease. So what is your take, am I a jerk for leaving her behind.

 

Problem #2 is a bit hairier. Because, partly of the above, and mostly other communication issues, I have begun seriously considering divorce. However I don't feel it is morally right because she is not able to take care of herself (when we met she was receiving disability but it is quite an ordeal to get, especially considering the assets she would obtain from a divorce settlement). I took the vows to stick through sickness and health, etc, and I take those very seriously, what still makes me hesitate though is the fact that it's not the disease causing the problem, it's the rest of her attitude. I am taking a middle road right now but we are getting more and more disconnected and I don't think it's sustainable for much longer, at some point I fear it will be reduced to a caretaker to patient relationship (although there is very little "caretaking" inside of the house but she is unable to drive so that makes her very dependent). Well I am not sure what I am looking for here really. Have you gone through the same and found that divorce ended up being more satisfying for both ends? Or would you rather advocate sticking through at all cost.

 

I agree with the others, get some type of counseling. Also find other people/couples who are in your same situation and find out what coping mechanisms they use. Maybe while you and a husband go kayaking, the girls could stay at a cabin and get massages and spa type items.

 

Part of her attitude could be the disease itself affecting her from a biochemical/hormonal standpoint. Also it is hard to live with a chronic illness and often times people sit back and judge and say that their attitudes would be different or really positive.

 

I felt this way about a friend who had an illness that ended up taking her life. I thought that if I were sick that I would be nice to everyone and have the greatest attitude. I was young and rather dumb. Years later, I understand.

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Hey Luvbun,

 

I have MS and here's my take on it for what its worth.

 

First, luckily, my MS is no where near anything your wife is experiencing, so although I may not know what its really really like to live with the limitations of MS, I do know what its like to KNOW that I have this illness that could get so much worse and put an end to my life as I know it.

 

That thought scared me so much when I was first diagnosed ~9 years ago.

 

With regards to issue#1: No, I don't think you're asking too much if you want a day or 2 to yourself to go out and do whatever outdoorsy activity you want. Its your life and you and your W shouldn't be joined at the hip.

 

To make it so that you can go out with less guilt, maybe you can encourage her to take up a hobby - I understand she can't drive and she doesn't get around too much by herself, but maybe she can join a book club and host some of the meetings at your house, and for the others, maybe you can drive her before you head out and just arrange for her ride back.

 

Maybe she can take up, art or crafts or something of the sort, all she would need for that is ride arrangements.

 

You need to encourage her to talk to someone because she needs to understand that you're not abandoning her if you're going out and getting some Me time once in a while, she needs to know that its GOOD FOR YOU to have that time.

 

Issue #2: Knowing that I have MS and that somewhere down the line it could actually get bad, I still stand by my view that I would NEVER want anyone to be with me out of obligation - EVER!

That would be my biggest nightmare.

 

Don't stay with your wife because you feel obligated to. I know you said for better or worse, and that's real love, to stand by someone even through the bad times, but that doesn't mean that you should just stay there because you'd feel guilty if you left.

I don't think anyone really wants someone to be there because they have to.

 

I do think that if you resolve issue #1, you probably would feel better about staying - but that would involve a commitment from her as well.

 

Talk to her and be honest with her, tell her that you want to be there, but you also need to have your time and you need to do things you find important and pleasurable to you. You're willing to help her find a hobby or something to fill her time so she's not bored or lonely when you're doing your thing, but she needs to meet you half way with this.

 

Good luck to you :)

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luvbun, my wife also has m.s. hers is the rr m.s. just my opion, but she's being unreasonable, about you wanting to at least enjoy yourself "alittle" bit. on the second hand. have you every checked into the new surgery called ccsvi for m.s. patients? my wife had the surgery at albany new york medical center, on june 22nd 2011. it's a pretty simple surgery. and in just the short time since the surgery, you would not believe the difference in her, walking soooo much better that we are over at the high school 440 track, hands and feet are no longer cold and numb,vision in her right eye ie coming back. insurnace covers the surgery which lasted 45 minutes,but was there for 3 days total with follow ups. we drove 500 miles for this surgery.

As far as i know there are only 3 places in the u.s that do this surgery, one in n.y,calif, and now georgia. don't know how to post a link,so if you go to ccsvi community care, the website will come up. you can also go to youtube and type in ccsvi, and see the amazing results! good luck

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I think you need to go talk to someone about this, a therapist, because this is what you signed up for knowing she has MS from the get-go.

 

I"m sure this isn't easy on you, being caregiver and looking after her..Your other choice is, hire someone to help, a trained nurse..

 

Your wife also has to understand that your life can't stop, you need to do activities and have time for yourself. Nothing wrong with a few day trips going hiking or kayaking..This is something that she needs to work through.. Maybe counselling for both of you would help.

 

I don't suggest walking away and divorcing, bailing on her as life is changing and getting harder.. As I said, you knew this by marrying her that this could happen, albeit, further down the road, but still.. 10 years in, to divorce when she needs you most? Unless you don't love her anymore and do not want to be there for her, then divorce quickly and get her family involved because she's going to need help and lots of support, obviously living alone is going to be hell for her.

 

Don't make any decisions until you talk to a professional..On here we can give you advice but I wouldn't make hasty decisions based on what others here can say.

 

Keep posting.

 

Thanks, that really echoes my feelings and furthers my conviction that divorce is not a good option as long as there is some love left. I may have to seek individual or couple therapy as what I have been doing is not working too well! I do still love her but her attitude has become more and more distant, I think part of it is that she is frustrated with her disease and I am the only one around to lash out at. We recently moved to be closer to her family (used to be on the other side of the country) which I was hoping would be a good alternate support for her but didn't help as much as anticipated; in fact a lot of the times she soldiers on while we are visiting like nothing is wrong (she has a lot of pride) then when we get home she is twice as exhausted which makes her angry.

 

 

I have MS and here's my take on it for what its worth.

 

First, luckily, my MS is no where near anything your wife is experiencing, so although I may not know what its really really like to live with the limitations of MS, I do know what its like to KNOW that I have this illness that could get so much worse and put an end to my life as I know it.

 

Thanks for the post! It helps to see the reaction from someone else with the disease. It's a scary situation though like I said she has been in remission for a long time with very little change to her condition over the years.

 

The hobby suggestion is good. She used to do quite a bit of craft (before she discovered Farmville!) and she did have a nicer attitude at that time, though not sure if that is directly related or not. Her and her sister are also both pagan so maybe they could do their pagan thing together once in a while.

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luvbun, my wife also has m.s. hers is the rr m.s. just my opion, but she's being unreasonable, about you wanting to at least enjoy yourself "alittle" bit. on the second hand. have you every checked into the new surgery called ccsvi for m.s. patients? my wife had the surgery at albany new york medical center, on june 22nd 2011. it's a pretty simple surgery. and in just the short time since the surgery, you would not believe the difference in her, walking soooo much better that we are over at the high school 440 track, hands and feet are no longer cold and numb,vision in her right eye ie coming back. insurnace covers the surgery which lasted 45 minutes,but was there for 3 days total with follow ups. we drove 500 miles for this surgery.

As far as i know there are only 3 places in the u.s that do this surgery, one in n.y,calif, and now georgia. don't know how to post a link,so if you go to ccsvi community care, the website will come up. you can also go to youtube and type in ccsvi, and see the amazing results! good luck

 

Is that the vein widening surgery?

I've heard of that one, and I just read that its being approved in Canada (Ontario at least).

 

I'm glad to hear that there are some significant advancements in helping MS patients.

 

Glad to hear that your wife is doing much better :bunny::)

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Thanks, that really echoes my feelings and furthers my conviction that divorce is not a good option as long as there is some love left. I may have to seek individual or couple therapy as what I have been doing is not working too well! I do still love her but her attitude has become more and more distant, I think part of it is that she is frustrated with her disease and I am the only one around to lash out at. We recently moved to be closer to her family (used to be on the other side of the country) which I was hoping would be a good alternate support for her but didn't help as much as anticipated; in fact a lot of the times she soldiers on while we are visiting like nothing is wrong (she has a lot of pride) then when we get home she is twice as exhausted which makes her angry.

 

When your body doesn't function like you want it to, when it fails to do what it used to do, that is quite frustrating.

I think she acts brave, like you said because she has so much pride, but you are the only one she trusts enough to let go of that pride and show her real weaknesses to.

 

But at the same time, she really needs to become aware that you need your outlets too, you need to not have her lash out at you (depend on you - ok, fine), but not make you her personal punching bag.

 

I do believe that you need to talk to her about the things you need in order for you both to make the best of this situation.

 

I hope the hobby plan works.

 

Its tough and you are being really strong and loving and that's not for nothing.

 

Good luck :)

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the surgery involves,opening up the veins in the head. they go thru the groin like a heart cath. drs are finding out that "old" blood is laying in the brain and tuening to iron which eats at the nerves in your brain. this is just a amazing surgery. karens hands just used to be so cold, and had a rough time holding on to a pen. modern science is just getting better.

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frozensprouts
I will try and keep this short and sweet.

 

Wife has multiple sclerosis, a chronic / progressive (but non terminal) disease. She has been in remission for the past 10 years, knock on wood, though she does have some limitations (she has to wear leg braces, can't walk for long distance, has reduced eyesight, can't stand the heat, and has chronic pain). Well, I knew all that when I married her, so I'm not complaining. We're both fairly sedentary so it's not terribly incompatible.

 

Now for problem #1. Although I said we were fairly sedentary, I do enjoy some outdoor activities in the summer. She feels like I am abandoning her if, say, I take a day trip to go kayaking a couple times a year. I know the disease sucks and all but am I asking too much here? Id love to do everything together but it's just not possible with her disease. So what is your take, am I a jerk for leaving her behind.

 

Problem #2 is a bit hairier. Because, partly of the above, and mostly other communication issues, I have begun seriously considering divorce. However I don't feel it is morally right because she is not able to take care of herself (when we met she was receiving disability but it is quite an ordeal to get, especially considering the assets she would obtain from a divorce settlement). I took the vows to stick through sickness and health, etc, and I take those very seriously, what still makes me hesitate though is the fact that it's not the disease causing the problem, it's the rest of her attitude. I am taking a middle road right now but we are getting more and more disconnected and I don't think it's sustainable for much longer, at some point I fear it will be reduced to a caretaker to patient relationship (although there is very little "caretaking" inside of the house but she is unable to drive so that makes her very dependent). Well I am not sure what I am looking for here really. Have you gone through the same and found that divorce ended up being more satisfying for both ends? Or would you rather advocate sticking through at all cost.

 

luvbun80, please correct me if i am wrong, but aren't you the guy who wanted to know if divorce was a good option if your wife didn't want to perform oral sex?

 

from what you are saying here, you wife has a serious illness that has resulted in her having some debilitations. you are , in effect, her 'psuedo-caregiver", which can be an extremely difficult place to be in. Not trying to be 'nosy' or anything, but is it possible that this is where your real problem lies? if so, there is totally understandable.

 

It sounds like to provide a lot of support for your wife...do you have a source of support for yourself? A time that is 'just for you' when you can unwind and relax?Do you have any hobbies, etc. that you ca do on your own and people to talk to when you start to feel like things are getting really difficult?

 

i hope so...you need to protect yourself from being 'burned out, because , if you don't, you will be of no help to her or yourself.

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luvbun80, please correct me if i am wrong, but aren't you the guy who wanted to know if divorce was a good option if your wife didn't want to perform oral sex?

 

from what you are saying here, you wife has a serious illness that has resulted in her having some debilitations. you are , in effect, her 'psuedo-caregiver", which can be an extremely difficult place to be in. Not trying to be 'nosy' or anything, but is it possible that this is where your real problem lies? if so, there is totally understandable.

 

It sounds like to provide a lot of support for your wife...do you have a source of support for yourself? A time that is 'just for you' when you can unwind and relax?Do you have any hobbies, etc. that you ca do on your own and people to talk to when you start to feel like things are getting really difficult?

 

i hope so...you need to protect yourself from being 'burned out, because , if you don't, you will be of no help to her or yourself.

 

Good memory - that was me, I have moved past the sexual frustration stage, thankfully. I don't want to give the wrong impression about her or my role, she is totally able to take care of herself (other than she can't drive, anyway), she does not work but she does the cooking, laundry, most of the household chores. But yeah it's not always the easiest situation. She used to be my main support but now she tends to brush me off a lot more (as happened with the whole oral sex thing). I am not sure where that came from, still trying to figure that out!

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  • 2 weeks later...
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Well the hobby suggestions didn't quite work out, I am getting a lot of "I would not want to go out and do something without you, therefore you should not either".

 

I don't quite know how to make her understand that she is choking me. She did talk to a friend couple of ours (actually more her friend than mine, as I have not known them very long), when we went out to dinner with them last week-end. The way she put it to them was "Hey, listen to what a-hole did 2 weeks ago". They were a bit mystified that she was making a big deal (or any deal at all) out of it, but instead of changing her opinion she got a bit sore at them for "taking my side". I did not say anything or push the issue any further, beyond some lame validation like "Yes, it was tough for her to be left alone all day", and changing the subject - the last thing I want to see is a rift between her and her friends as she does not have many.

 

I keep trying to put my foot down on some of those issues but whenever I do I get a screaming match then the silent treatment for weeks on end. I am not even hoping for a really romantic relationship at this point, but just have some semblance of civility and respect for each other.

 

I have suggested MC but she is categorically opposed to it, having had bad experience with a counselor in the past. So, if I ever get to the point where I feel I've had too much, I'll put it to her as an ultimatum, but I already know what the result will be. I remember going to family counseling after my dad had a horrible accident years ago and thinking it was a load of bull too so can't say I totally disagree with her there.

 

I tried some self help books, and they definitely helped gain some understanding of the situation. I can look back at the stuff I did and said 6, 12 months ago, and see how foolish it was. So, maybe I am just being impatient here. I tried to get her to read some with me but of course with her vision problem that's not the easiest. I got the Kindle app to view them on the PC with the fonts blown up real big but it's not as pleasant to read (she chats with her farmville buddies at least 12h/day so it's not like she was totally blind, but I understand how that's quite different from focused reading). Beyond this is the fact that she is convinced she does not need to read them since we have a perfect relationship, if I could just stop trying to rock the boat, damn it (her words), and even if it wasn't, it would only be my fault as she is faultless (my interpretation here). So yeah, end of the story there is that she has not opened one.

 

Haven't hooked up with MS support groups yet but that's definitely on the todo list.

 

I will try IC once things lighten up a bit on the work side though, but I already know it's going to be construed as an attempt to spend time away from her.

 

Anyway, not much of an update I know. I'll keep trying, just wanted to vent a bit. Thanks for reading.

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