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    #16
    The truth is hard.

    I have responded before in the past.

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      #17
      Happy?

      All in all I am still very happy with our relationship. I had the benefit, I guess, of knowing that my wife has MS before we ever started dating. I didn't care, I love her for her. I didn't really know what MS entailed. I've learned a lot and we have managed to adapt and continue on. Of course I wish more than anything she were healthy, but I'd rather have her as she is than not at all.

      For me it has opened my eyes to a lot. For example my mom's non-MS health issues. I've gained so much more understanding of what fatigue really is. Before I would have just told her to take a nap and get on with it. (By the way, I now know not to do that)

      Of course our relationship has had some bumps along the way, but none due to her illness. Blended family is the hard part. LOL I do get frustrated with my wife's illness sometimes or worn out from doing maybe more than my "share" of household responsibilities. But I also realize she is the one fighting a horrible disease. So I'll sometimes take some me time and get over it.

      We often say to each other that we are great team. She provides me with way more than I can offer her I feel.

      And I can't go without saying how much information and insight that I have gained from this website over the past few years. Many thanks to all who contribute.

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        #18
        Originally posted by LadyMS View Post
        Why shouldn't a caregiver be able to do the same without worrying about how a person with MS will feel?
        Caregivers absolutely should be able to vent! In fact I don't blame those who decide they can't continue. My plan is to hire professional assistance.

        This is not an easy disease to deal with on either side of the fence and I think although we have MS our caregivers are the ones really suffering from it. I believe it ruins their lives just as it ruins ours.
        He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
        Anonymous

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          #19
          For me I am still happy and still wouldn't want anyone else in my life, I deal with the struggles of having to deal with her MS and am not the easiest to live with but the part I hate most is trying to deal with my own demons of Depression and PTSD I have to be a cheary person while I am at work etc but while I am home I struggle with anger issues that are making her feel bad as she thinks I am mad at her. I have nowhere to let my guard down or show how I really feel I just don't know how to cope with it all and remain sane I just don't want to loose her.

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            #20
            MS totally sucks, and we don't love the way it is, has, and will continue to change our entire lives. Our plans, and dreams for out future. It seems unfair, to us, our children (half of whom will never really remember him without MS) and our grandson and future grandchildren.

            But, I am happy with my husband. He's the love of my life, my prince charming, my knight in shining armor. My life would be incomplete with out him. Nothing could change that.
            This:
            "Believe it ruins their lives just as it ruins ours"
            Totally true. But thanks be to God we don't have to do it alone. We are doing it together.

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              #21
              Originally posted by tx2step View Post
              MS totally sucks, and we don't love the way it is, has, and will continue to change our entire lives. Our plans, and dreams for out future. It seems unfair, to us, our children (half of whom will never really remember him without MS) and our grandson and future grandchildren.

              But, I am happy with my husband. He's the love of my life, my prince charming, my knight in shining armor. My life would be incomplete with out him. Nothing could change that.
              This:
              "Believe it ruins their lives just as it ruins ours"
              Totally true. But thanks be to God we don't have to do it alone. We are doing it together.
              You sound like a very kind and supportive wife. Thank you for posting.
              He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
              Anonymous

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                #22
                Any caregivers share to respond?

                I'm a caregiver.... to my spouse with SPMS. I'm not happy in the least and am not certain I want to stay in this marriage. Is it because of the MS? I don't know... but this is not how I want to spend my remaining 50-60 years. Maybe it's selfish, but I don't want our child to see this as what a "marriage" should be.

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                  #23
                  I care

                  Originally posted by Tawanda View Post
                  I honestly don't think many "carers" careenough to come to this site.
                  My husband (he has MS) can get very negative about life in general, the future and a host of other things. It can be a real challenge to stay posative when he gets in this rut. I cannot depend on him for emotional support which makes me sad. I have to find ways to make myself happy that don't depend on him. Its sad but I think its important that I find my own life. Neither one of us or our children will benefit from two parents who are depressed. Its about self care not selfishness. We made promises to each other 33 years ago...in sickness and in health. We all have weaknesses, infirmities and ongoing sins that we struggle with. It helps me to realize that I have my own share of handicaps, mine just don't affect the way I walk...

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                    #24
                    Originally posted by Lynn777 View Post
                    My husband (he has MS) can get very negative about life in general, the future and a host of other things. It can be a real challenge to stay posative when he gets in this rut. I cannot depend on him for emotional support which makes me sad. I have to find ways to make myself happy that don't depend on him. Its sad but I think its important that I find my own life. Neither one of us or our children will benefit from two parents who are depressed. Its about self care not selfishness. We made promises to each other 33 years ago...in sickness and in health. We all have weaknesses, infirmities and ongoing sins that we struggle with. It helps me to realize that I have my own share of handicaps, mine just don't affect the way I walk...
                    Beautifully said and I think all well rounded marriages benefit from independent activities and interests. My girlfriends are my best forms of emotional support. Not because my husband doesn't care but he's just not that interested in mulling over and commiserating like my female friends will do.
                    He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
                    Anonymous

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                      #25
                      Originally posted by Lynn777 View Post
                      We made promises to each other 33 years ago...in sickness and in health. We all have weaknesses, infirmities and ongoing sins that we struggle with. It helps me to realize that I have my own share of handicaps, mine just don't affect the way I walk...

                      This statement, with the years changed to 20, is what reminds me every day why I am able to do the things I do. I love him more today, than I did 20 years ago, and hope to keep growing in that love for years to come, the disease be damned. We try not to let the disease define our marriage, or relationships. Is it easy?? NO. On those days I have to do for myself. I have to find something to bring me back to my happy place. Thankfully, both of use a lot of gallows humor to get through. The types of things that shock my friends, we can usually laugh at after we get through the crisis at hand.

                      I'm looking forward to the day when a cure is found and we can truly just care for one another equally. Lean on one another without guilt, and make up for the time this horrible disease has robbed form us. Until then, one day at a time, sometimes one moment at a time.

                      I'm so glad another care giver posted here.
                      Jenn
                      Husband dx'd with RRMS 1995-2007 SPMS-2007
                      ~ Caregiver married 20yrs ❤️

                      "11 For I know the plans I have for you,” declares the Lord, “plans to prosperyou and not to harm you, plans to give you hope and a future."~Jeremiah 29:11

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                        #26
                        I've been married to my wife now for 17yrs and we share two beautiful daughters (12 and 15). My wife was newly-diagnosed a few months before we met, so I knew she had MS going into it. At that time, she had RRMS, and the only noticeable issue she had was a slight drop-foot sometimes.

                        Well, those days seem to be a lifetime ago, because now she has CPMS, and needs two canes just to stand-up. I won't go into all her maladies, as I'm sure everyone here has a good idea of what we're dealing with. I've decided to post to this thread (my last post was years ago) because I feel like I'll suffocate if I don't get this off my chest. I've never mentioned anything like this to anyone, especially my wife. But the truth is that I've been unhappy in my marriage the last few years, and it just keeps getting worse. As she's declined, the things we do together have been getting less and less. Pretty much all the activities that we mutually enjoyed together can no longer be done by her due to the MS. I feel guilty about doing these activities alone, because I know it makes her feel sad that she can't do them anymore.

                        Going into this, I thought that if her MS progressed, it would bring us closer. But, I'm finding that the opposite is true. I feel like there is a wall that's between us, and it's growing thicker. We don't talk about it, but I feel like it's there. I'm not sure she does, but I don't see how she can't feel it. I don't feel like we're a couple anymore. I feel like we're a three-some, with MS being the third person. I constantly feel like there's a heavy tarp covering us, that we can't get out from under. I used to look forward to seeing her and being around her, and now it's just the opposite.

                        When I'm away I relax and breathe easier, and when I'm with her, I'm all tensed-up. I just want to come home from work sometime and be greeted with a (non-forced) smile. I haven't experienced that in years. When I'm driving home, all I think about is what level of sorrow did she experience today (ie: fell down, dropped something, lost bladder control, fatigue, etc). Sex is non-existent, and even getting her to laugh is dangerous, as her diaphram starts to spasm and she almost passes-out! I mean....we can't even laugh now?...

                        The thing is, she's an awesome person and mother, and gives 120% of her being to maintain a household and be a mom and wife. I have absolutely no criticism of her. She does everything she possibly can. If you had to choose a spouse with MS, she's the one to get! That said, I'm not happy. I have no girl on the side (and am NOT looking); I have no plans to leave her. I just feel we're both on this airplane that's on fire and spiraling into the ground. I love her, but I'm not enjoying it.

                        ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

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                          #27
                          Originally posted by Bat21 View Post
                          I've been married to my wife now for 17yrs and we share two beautiful daughters (12 and 15).

                          ...I don't feel like we're a couple anymore. I feel like we're a three-some, with MS being the third person. I constantly feel like there's a heavy tarp covering us, that we can't get out from under. I used to look forward to seeing her and being around her, and now it's just the opposite.

                          When I'm away I relax and breathe easier, and when I'm with her, I'm all tensed-up. I just want to come home from work sometime and be greeted with a (non-forced) smile. I haven't experienced that in years. When I'm driving home, all I think about is what level of sorrow did she experience today (ie: fell down, dropped something, lost bladder control, fatigue, etc). Sex is non-existent, and even getting her to laugh is dangerous, as her diaphram starts to spasm and she almost passes-out! I mean....we can't even laugh now?...

                          The thing is, she's an awesome person and mother, and gives 120% of her being to maintain a household and be a mom and wife. I have absolutely no criticism of her. She does everything she possibly can. If you had to choose a spouse with MS, she's the one to get! That said, I'm not happy. I have no girl on the side (and am NOT looking); I have no plans to leave her. I just feel we're both on this airplane that's on fire and spiraling into the ground. I love her, but I'm not enjoying it.
                          [COLOR="#0000CD"]
                          It sounds like your relationship started with a sound base and used to be fun. But, it's changed.

                          I'm glad to hear that you have no one on the side, that you are not looking, that you do not plan to leave her, and, most of all, that you love her. Love is a decision, not a feeling. It sounds like you have made that decision and that committment.

                          It also sounds like you know how to relax and have fun -- when you are not together. Now, somehow, you need to work with each other on your relationship.

                          I've become a believer in resiliency strategies. Your relationship has become weighed down with stress. Being resilient does not mean being impervious to stress, but it does mean adapting to and coping with stressful situations. Resiliency can be acquired through learned behaviours, thoughts and actions.

                          Perhaps you and your spouse could build resiliency together. Google "resiliency strategies" and look for suggestions about natural ways to cultivate happiness.

                          Try sunshine and spending time outdoors, adding some social time to your day, writing in a gratitude journal, yoga, meditation, listening to calming instrumental music, sit next to each other on the couch and watch a family-type movie or a romance, etc.

                          Try going to your "happy place". Do you know where your "happy place" is? Do you know where hers is? Have a conversation about it.

                          Consider daily "power poses". You can Google those too. There is a TED Talk about them. Add positive affirmations to them.

                          Find ideas that appeal to you; some of these might not. We're all different.

                          Keep a list of the strategies you decide to try. Some might take 5 or 10 minutes. Others can be less. Movies together would be more. Throw a resiliency strategy into your day at occasional, but regular intervals. First time you see each other each day; after you return home from work. After supper. Before bed. If you have a list, it will be easier to squeeze one in.

                          Maybe you can even find strategies that your whole family can do together. Although your kids are at the age that they might not be interested. Unless you can all brainstorm together about what family strategies you might wish to employ.

                          Consider therapy or marriage counselling. You and your wife likely have many years together. If you are unhappy, she likely is too. Find a way to reverse this for both of you.
                          ~ Faith
                          MSWorld Volunteer -- Moderator since JUN2012
                          (now a Mimibug)

                          Symptoms began in JAN02
                          - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                          - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                          .

                          - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                          - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

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