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    #31
    Sam and I were married for nearly 46 years. In that time we were both caregivers to each other at one time or another. In the last 2 years I was a full time caregiver to Sam, watching him suffer, picking him up when he fell, giving him meds and sending him to the E/R more times than I can count. In the end I was with him when he took his last breath.

    I am going thru an awful grieving period that will never end. But I am so happy that I was with him thru it all. I would never abandon him in his darkest hour. Our family did everything he wanted... honored all his wishes. It wasn't easy letting him go. But we are comforted in knowing we did what he wanted and kept him at home till the end.

    Life and death are going to happen one way or another. You will find out how much he means to you or how much you mean to you.
    Marti




    The only cure for insomnia is to get more sleep.

    Comment


      #32
      Daisycat, I am sure that all of us in relationships have felt at times like you are feeling now. I know I sure have! But if your relationship is solid (disregarding the MS) then why end it? As much as you have fears about your health and mobility in the future, there is no guaranty for tomorrow for you or your partner....and the cause may not even be MS.

      Early in my diagnosis I used to visit the “what if” place quite often...which I think is normal and part of the process to get closer to acceptance. (Which sometimes I am there and other times it is like starting all over again.) Anyhow, during these times I would remind myself that I could easily be in a motor vehicle accident and have significant injuries or death...or have a greater health issue come up, even worse than what MS might ever or not even offer.

      Even today, almost 10 years from dx, I still have tough times when I remind myself of this.

      What if tomorrow your partner suddenly became seriously ill or injured....would you want him to ask you to walk away? And would you want to? Part of the gift of life is the growth we experience through both the good things along with the bad/difficult and even heart reaching. Marti’s story above, with her dear husband Sam, is the perfect example I am trying to convey...as much as she and her husband grieved through the various trials of life, in the end the love is what was felt and is remembered, not the pain.

      Daisycat, Perhaps I am really writing this right now for me, as well as you, as I have been having a difficult time and put this into words for you has ended up actually becoming a personal gift actually for me....as I needed to hear this today. You will figure out what is best for you...and you have a lot of friends here at MS World offering you support...you are very blessed 💕💕

      Comment


        #33
        Myoak –


        I will look at that new oral tablet. I am wondering if it will be a pain to get approval through insurance for it. I have been stable with what I am on so far though, and starting something with bad/noticeable side effects scares me.

        Cat mom


        I do want to be with him. I just hate the thought of hime resenting me and hating me 5-10-20 years from now. I would give anything to go back to how it was 14 months ago. I still don’t understand how or why this had to happen.

        Pennstater


        I really like my new neuro. We do disagree on medications, but that is my only thing I did not like about her. She thinks it is best to use the strongest one asap to prevent anything new. I get that, but I also can’t exactly wear a mask to work every day and not have people ask questions. Also out of curiosity I looked up some of the newer medications and there are 2 my insurance doesn’t cover. (Actually looked up all of the different meds)

        No idea why it doesn’t cover it. I was just looking in case I ever wanted to switch.

        Mamabug


        The neuro I saw today recommended discussing it with him, but she did say in the end it was my choice. She said I should 100% have a talk with him first. I think if he can be OK with Switzerland I can see how things go. If he is against that if it is ever needed though I am not sure if that is something we can get passed. And I hope you and your hubby have many more years of happiness together.


        isamadjul

        This disease to me does feel like a death sentence. Part of me died 14 months ago and I will never be the person I was again. And yeah technically we are common law married, neither one of us have ever seen the point in marriage though since we don’t want kids. One of the neuros I saw said it made sense that I was considering breaking up with my bf. I am one of those stubborn people who doesn’t like to ask for help and I know that could be bad at some point. I will do everything I can to make sure I don’t seem helpless.


        Marti


        I am sorry you had to go through that. I hope things start to get better for you. I am glad you were able to be there and give Sam comfort.

        MyMomsGirl

        I live in the what if place. I am pretty sure they have a street named after me there. If my partner became injured I wouldn’t want to leave him and I wouldn’t want him to leave me. I still feel that this thing is my fault and if it progresses to where I am disabled it is my fault because I didn’t fight hard enough, or work out enough , or take the right medicine/vitamins.




        Thank to everyone who is offering advice. It means a lot.

        Comment


          #34
          Originally posted by Daisycat View Post

          Mamabug

          The neuro I saw today recommended discussing it with him, but she did say in the end it was my choice. She said I should 100% have a talk with him first. I think if he can be OK with Switzerland I can see how things go. If he is against that if it is ever needed though I am not sure if that is something we can get passed.
          Yes; talk to him. About everything, including Switzerland. Give him a choice -- after he knows about Switzerland.

          There are so many possible outcomes.

          - He could agree, or disagree, with your Switzerland plan. He could stay or leave. But it is worth a conversation -- so that he can decide. He needs to know.

          Either of you could change your mind, years later.
          - If he decides to stay, he could accept Switzerland later, even if he doesn't now.
          - He could continue to disagree about Switzerland, but support your right to make your own decision.
          - You could change your mind about Switzerland, even if your health declines. And it might not decline significantly.

          Originally posted by Daisycat View Post
          And I hope you and your hubby have many more years of happiness together.
          Thanks so much, Daisycat.

          Originally posted by Daisycat View Post
          Thank to everyone who is offering advice. It means a lot.
          You seem to have really mellowed in recent weeks. Instead if arguing with our advice, you seem grateful, and you are able to find pieces that are helpful, even if you don't agree 100%.
          ~ 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.

          Comment


            #35
            I think what I’m going to do is discuss Switzerland with him. If he can’t accept it then I think it’s fair we part ways. And by not accept I don’t just mean disagree. I mean he’s 100% against even the thought of it.

            If he agrees we will have to discuss what I see as my limit and if he finds that reasonable or if he thinks it would be to early. (He wil- I already know the answer to that)


            Ive been sleeping on the couch since I got my new ear piercings and tattoo because it’s more comfortable and I don’t roll over on it.


            I think the extra sleep (not even really extra) just sleeping through the night without the snoring is helping me a lot. (Some days)

            Comment


              #36
              You just tell him that you are breaking up with him. Stringing him along is unfair and a waste of his time and energy. Since you are both adults, waiting for a "good" time is silly. Adults puck up and move on, and they don't like being lied to to save their feelings over a holiday or game. I wouldn't break up with someone during his mother's funeral or on the day he loses a job. But short of something like that, the sooner the better for both involved.

              This has clearly been causing you stress for more than a year, so let it go.

              Comment


                #37
                I responded before I read the whole thread. I won't do that again. 😳 It sounds as if you aren't as firm about breaking up as your initial post sounded. If you do decide to break up, though, then I stand by my opinion below. Short and sweet, and as soon as you know to be fair to him and you.

                I'm betting that he is on board with your Switzerland plan, since if that ever happens it will be decades from today.

                Originally posted by MMMMS View Post
                You just tell him that you are breaking up with him. Stringing him along is unfair and a waste of his time and energy. Since you are both adults, waiting for a "good" time is silly. Adults puck up and move on, and they don't like being lied to to save their feelings over a holiday or game. I wouldn't break up with someone during his mother's funeral or on the day he loses a job. But short of something like that, the sooner the better for both involved.

                This has clearly been causing you stress for more than a year, so let it go.

                Comment


                  #38
                  We discussed Switzerland and he seems ok with it. We do have different ideas of when I should use it.

                  He also seems ok with the fact that he might have to be my caretaker one day.

                  I’m not ok with that though so I need to decide what I should do.

                  Comment


                    #39
                    I'm glad you talked to him. I'm not at all surprised that you and he are not at as different places as you expected. You really have spent a lot of months worrying about something that didn't come to fruition. Seems like a lot of wasted time and anxiety.

                    Originally posted by Daisycat View Post
                    ... so I need to decide what I should do.
                    Ummm. It should still be a "we" decision, not an "I" decision. You're in a relationship where decisions should be made together, not dictated by 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.

                    Comment


                      #40
                      I get this should be a decision we make together, and if he can accept how little I am willing to sacrifice before Switzerland I will be happy to stay with him.

                      Its just not fair for me to keep him knowing that it’s likely I’ll be doing that trip long before he’d be ready.

                      But That part of this is a me decision. He won’t be the one unable to drive around or walk or have a job.

                      Hopefully it never happens. I am already saving money to for a 2021 trip to New Zealand so this disease better leave me alone.

                      Also have 2019 summer plans that I’m really looking forward too...

                      i have a 50 thing bucket list to finish and I’d really like to do that before having to even consider Switzerland, but it’s always on my mind.

                      I think because of how quickly I went from a happy person planning for a future to someone just trying to experience everything I’ve ever wanted too.

                      Not meaning to sound depressing but honestly I’m sick of missing out on things because of this crud.

                      Comment


                        #41
                        Originally posted by Daisycat View Post
                        Hopefully it never happens. I am already saving money to for a 2021 trip to New Zealand so this disease better leave me alone.

                        Also have 2019 summer plans that I’m really looking forward too...

                        i have a 50 thing bucket list to finish and I’d really like to do that before having to even consider Switzerland, but it’s always on my mind.

                        I think because of how quickly I went from a happy person planning for a future to someone just trying to experience everything I’ve ever wanted too.

                        Not meaning to sound depressing but honestly I’m sick of missing out on things because of this crud.
                        I hear ya and have been bucket listing it for a while now. Hopefully you will be lucky like I have been and get 10+ perfectly good years to enjoy life with your full faculties.
                        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

                        Comment


                          #42
                          Originally posted by Jules A View Post
                          I hear ya and have been bucket listing it for a while now. Hopefully you will be lucky like I have been and get 10+ perfectly good years to enjoy life with your full faculties.

                          I hope we both have 20 plus years. The only good thing that came from this is I’ve stopped dumping all my extra money into student loans and am making just the minimum payments.

                          I might as well enjoy whatever time I have left since my original plan is over and done with.

                          Comment


                            #43
                            Originally posted by Daisycat View Post
                            I get this should be a decision we make together, and if he can accept how little I am willing to sacrifice before Switzerland I will be happy to stay with him.

                            Its just not fair for me to keep him knowing that it’s likely I’ll be doing that trip long before he’d be ready.

                            But That part of this is a me decision. He won’t be the one unable to drive around or walk or have a job.
                            Yes; when you decide to go to Switzerland is your decision.

                            What to do with your relationship is a decision you should make together.

                            That's what I've been trying to tell you for months.
                            ~ 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.

                            Comment


                              #44
                              Originally posted by Mamabug View Post
                              Yes; when you decide to go to Switzerland is your decision.

                              What to do with your relationship is a decision you should make together.

                              That's what I've been trying to tell you for months.

                              but if we disagree on Switzerland is it fair to him to keep him knowing the pain I’ll cause?

                              Comment


                                #45
                                Originally posted by Daisycat View Post
                                but if we disagree on Switzerland is it fair to him to keep him knowing the pain I’ll cause?
                                "Keep him?". He's not your pet. And beaking up would cause pain too. And probably hurt and anger.

                                Switzerland is your decision.

                                Being willing, or unwilling, to live with the pain, is his decision.

                                You've given him the option to leave. It's not your job to make the choice for him.

                                Just love him, and allow him to love you. If he decides to go, you can part friends, as you hoped. If he decides to stay, you'll still be together and will likely grow old together.
                                ~ 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.

                                Comment

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