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    #16
    a big hug to you, bps25631

    Hi bps25631, it’s Maggie.

    Thank you for your post and for your honesty. First and foremost, I am sending you a huge hug.

    I, too, have been “sad, tired, and alone” with MS, in a ten-year marriage, outside of it and single, and in my new relationship now.

    I understand where jreagan70 is coming from in that it’s important to consider our own responsibility for our own happiness.

    But in any give-and-take, reciprocal relationship with loved ones, it seems to me that we are obligated to help take care of each other’s happiness to the extent that we can. And in a marriage, we take on a partnership that is about love and also about shared homes, shared finances, shared duties, shared family—often children. When both parties make such a shared commitment and have such a shared investment in the relationship and all it entails, a spouse who doesn’t support his/her spouse’s basic needs can, I think, reasonably be expected to be a source of unhappiness.

    But bps25631, I think you’ve been given so much good advice here, and that this unhappiness doesn’t need to be the case in your relationship with your husband.

    I think pennstater and Mamabug’s advice is wonderful—to take him to an appointment with your neurologist, to give him the “spoon theory” article (I could KISS whoever wrote that), to introduce him to the caregiver’s forum.

    And I agree with the idea of having a “heart-to-heart” talk with him, to give him the opportunity, as AriD said, “to truly understand your feelings and give you the rest and downtime you need.”

    And I also think Anneclare was so brave, too, when she talked about judging herself as “lazy” and “needy.” I do that all the time.

    I don’t know how to STOP doing that, and maybe I never will be able to completely. But from my own experience, I have learned that the best way I can take care of myself AND my loved ones is to be honest with myself, as Anneclare also said, about what I need, and then to make that clear to my loved ones.

    I really liked what palmtree said, about “getting tough about what I could do and not do, setting a firm structure so I could take care of my health.”

    What I’ve tried to say to my loved ones is that I hate having MS. I hate the fatigue and pain that come with it. I hate what it costs me, and I hate that it also costs those I love when I SHOULD be “in my prime.” I confess I do feel ashamed and like a burden. But even if I don’t LOOK like it, I have thus and such a limitation, and if I overextend myself, my health will further deteriorate and then I’ll be LESS good for THEM (my loved ones), as well as for me. So, if we can work together within my limitations, I can give them my best self.

    And goodness, as a side note, did any of us CHOOSE to have this disease? Why do we feel ashamed and apologetic?

    I also offer my loved ones a choice—I say, you know, Mom, I can’t do all day shopping like I used to. I CAN go to Target with you but I can’t stay more than an hour or two (I explain to her what happens to me with a funny name—I call it “the grocery store blues”—or overwhelm). And then next weekend I can go to the mall, but again, no more than an hour or two, and so on.

    So that way she can choose—does she want to go to Target with me for an hour or two, and then drop me off and go to the mall herself, or does she want to wait to go to the mall with me the next weekend? Etc. And I let her know there will be no bad feelings from me no matter what she chooses.

    I also like what Tawanda said: “keeping a marriage together ain’t easy.” And I want to add that I am one of those people she mentions who was in an abusive marriage, and MS—and others’ attitudes toward it—both made me more vulnerable to abuse and made it more difficult to escape. I won’t say more than that, because I want to speak specifically to bps25631’s situation (but Tawanda, I thank you for mentioning it, because it is SUCH an important issue).

    And what’s more relevant for you—bps25631— is that I now have a new relationship with a significant other—we have been together over a year—and we now live together. Recently, I had to tell him I could not go with him to a social gathering and stay more than 4 hours—I guess I could call it “the party blues”—the pain and fatigue and brain fog all increase and coalesce and I get to a point where I started out light-hearted and quick-witted and I become barely able to speak. It’s awful. So I gave him the choice: if he wants me to go with him and it goes on for more than 4 hours, we have to leave early—if he wants to stay longer, I’ll have to stay home.

    It worked out! And soon after, he sent me an email with a link to the spoon theory article, which I had never read before—he found it himself!

    I don’t mean to say there are happy endings or sad endings.

    I mean to say, bps25631, you deserve the best of happiness and health possible, and MS doesn’t make you less deserving, or more. You just deserve it, as we all do, and I hope that you and your husband are able to talk about it and work on it (or with it) and that whenever you are sad, tired, or alone, you are able to turn to him, or to a friend, or to the people on this board for understanding and warmth and support. Another huge hug to you. You are in my thoughts.

    I’d really like to know how you’re doing, and how it’s working out, in your own time, of course, and if you want to share—I know it takes a while to get there.

    Maggie

    PS. I am bolding people’s user names so that it will help in following the thread of conversation and the contributions of everyone. I hope it’s not annoying but helpful!

    Comment


      #17
      Thank you bps25631. I understand tired and alone. I have had this disease for more than 28 years. Being so young when diagnosed, I told myself I would never be in a relationship. Couldnt' bear for someone to nag me or to say it was all in my head.
      I made up my mind years ago, I would survive somehow and do the best I can.
      Been doing so ever since. Nope not easy, but you can do it.
      I know nothing of marriage as I already have mentioned so can't help you there.
      I just know we must make our disease and ourselves priority in order to keep going another minute, hour or day.
      Hang in there.

      Comment


        #18
        Originally posted by jreagan70 View Post
        I think this is an excellent example of what part of this thread is about -- the need to control everybody else so we can be happy, because everybody else is responsible for making us happy.

        At a minimum, it's the belief that we can make other people understand MS and how it affects us. Pressed further, it's the belief that we should and must forcibly educate others because it's not our fault that we have MS and it's everybody else's responsibility to understand us and come and fix us in our misery.

        There are 7 billion people on earth, and every one of them has their own agenda. People are responsible for alleviating their own suffering first, and then that of those they have chosen to take responsibility for. No one else is responsible for us or our MS or our suffering. Any caring we get from other people is a gift.

        Jerry, no one is obligated to care about or fix your suffering any more than you are obligated to care about or fix anyone else's.


        The answer from most of 7 billion people is "So what? I have my own problems. And I don't hear you giving a hoot about me."



        Yes, everyone's experience with MS is unique and personal, in part because of our own perceptions. Part of our experience is what we make it.

        Going back to the OP's question, how do we hold it together? Some of us, like Jules A, do it by choosing to take responsibility for our own experience.
        This sophomoric psychobabble is so irrelevant to the issue at hand. All that goes without saying. MS is an insidious disease. Others cannot see what we are experiencing and it's up to us to let them know. If they can't handle it (and many close relationships cannot) they leave our lives.

        I admire someone who is working with MS. They will have financial security when it is needed most. But there is a price to pay for it. If working 50 hours a week leaves you unable to do healthy things for yourself and spend quality time with your spouse, the spouse may go. If our spouse becomes our caregiver, the spouse may go.

        My aunt, who died of MS after twenty years of complete hell, is the vivid example that stays in my mind. She used a cane for about 6 months but quickly went to a wheelchair. A few years later she was in bed totally paralyzed, unable to speak, unable to swallow and completely blind.

        My uncle faithfully went to the office every day and raised two boys on his own. They had the money for a full time caregiver but the caregivers kept quitting. They couldn't stand the job. Yet my aunt never complained. Her son has told me in recent years that she was a saint. They were both saints but I wouldn't wish this life on anyone.

        Thank goodness not all of us experience such a severe case. But we now live at a time when most families cannot make it on one income. And then you add the cost of caregiving on top of it?

        "Personal responsibility" just makes me cringe because MS is not a problem we have brought upon ourselves. It's not a problem that we can ignore (unless we are lucky enough to have a very light case). If you are addicted to drugs, you can stop the drugs and "straighten out". But you can't stop MS.

        I agree with Jerry. We have got to be more vocal about the seriousness of this disease. If we do that it may eventually get the attention that cancer does.

        Sorry to dig this up right now. It's something I needed to express and didn't have the words for it at the time.

        **Edited by moderator in compliance with guideline #4**
        Last edited by Seasha; 03-01-2016, 01:01 PM.

        Comment


          #19
          First of all, I am so sorry for all you are going through at this time. But the best thing you did for yourself is coming here and letting us know how you are feeling. I feel for you.

          Does anyone remember a video in a mall where they had all this apparatus to put on people to let them know how it FELT to have MS symptoms. For example they put on these large rubber gloves, I think and told them to try and button their shirts. Then they tied on heavy weights and asked them to walk. Things like that. Does anyone know of this video? I could not find it on YouTube.

          Maybe you could write a letter to your husband on things you need him to know. Start by saying, I need you to....... THEN ask him to write/tell you how it feels to be a spouse to someone with a chronic disease. After all our disease also interrupts their needs and goals. No, its not the same as US who have to live with it, but it has affected our loved ones.
          VALIDATE their experience and feelings too, BUT WE have to TEACH our loved ones what OUR individual MS symptoms are like and how we deal with it ( or not).

          For example fatigue is not the same as being tired or needing more sleep. For me, it is not being able to move my muscle groups or think my next thought. I have no energy to make that happen. And work, thinking, household chores and relating take SO MUCH more energy than the regular folks. That is how I finally had to stop working. My primary doc told me I know you love your work, but its killing you. You are only getting worse because you are working. And I DID improve after a horrible relapse made me quit.

          We're here for you and I have my email address on my profile if you ever want to talk privately.

          Sending you hope, courage, and stamina to face this issue with your hubby.
          Hugs, Jan
          I believe in miracles~!
          2004 Benign MS 2008 NOT MS
          Finally DX: RR MS 02.24.10

          Comment


            #20
            It has been several months since I posted this thread and a lot has happened since. I have been constantly sick and had to do several rounds on steroids and antibiotics since January. I also had my worst flare up since I was diagnosed 4 years ago. I spent close to a month walking with a cane or walker. I went to my neurologist in March and he has recommended disability, so as long as my paperwork goes through I will go on disability retirement at the end of this school year. I have been going through a mourning phase with my job, but I know it is the right thing to do.

            My husband is a good man, he just doesn't understand the sheer exhaustion and pain I have felt over the last few month. We will be fine, I trust that God has a plan and I am hopefully that this new treatment will stop the progression of this horrible disease.

            Comment


              #21
              Thanks for the update. It sounds like, although life hasn't resolved itself completely, that you are looking at things more positively than when you first posted.

              And, sometimes, that's the best we can do -- look for, acknowledge and celebrate the positives, even in the midst of the difficulties we experience.
              ~ 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


                #22
                Originally posted by bps25631 View Post
                This disease is so hard... I feel like I suffer an invisible pain. I am physically and emotionally exhausted. I still work full time and want to be able to work as long as possible. The problem is my husband things I am the same person I was before the disease. He expects me to keep going at the same speed and not complain. I guess because I look fine, I should not be having issues. How do you guys hold it together and make you spouse understand what MS does to our body?
                This disease is really hard. My kids don't believe I have MS. I was diagnosed in 2002 and they still are in denial. The are in their late 30's and early 40's. One told me today that I wasn't sick and didn't need a new power wheel chair. My husband passed away a year ago March 10th. We were together over 40 years. I am really struggling over a lot of things and I am tired all the time and have spasticity in my legs and also cramps sometimes in my feet and legs. I have 2 sons that are particularly interested in my health and want to take care of me. I guess 2 out of 4 ain't bad. I am going to take life one day at a time and lean on my Savior for the help that I need.

                Comment


                  #23
                  My personal perspective

                  Originally posted by pridej View Post
                  This disease is really hard. My kids don't believe I have MS. I was diagnosed in 2002 and they still are in denial. The are in their late 30's and early 40's. One told me today that I wasn't sick and didn't need a new power wheel chair. My husband passed away a year ago March 10th. We were together over 40 years. I am really struggling over a lot of things and I am tired all the time and have spasticity in my legs and also cramps sometimes in my feet and legs. I have 2 sons that are particularly interested in my health and want to take care of me. I guess 2 out of 4 ain't bad. I am going to take life one day at a time and lean on my Savior for the help that I need.
                  I am sorry to hear about your loss. ❤️ 40 years is a lifetime! Your kids lost their Dad, too. The stress and sorrow must be running at an all time high right now. Wait for the dust to settle before judging anyone's behavior...this is so fresh. Emotions must be running the gamut.
                  Tawanda
                  ___________________________________________
                  Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

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