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    Sad, tired, alone....

    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?

    #2
    MS is well-nigh impossible to explain - you can't get it unless you've got it.
    I know I didn't.

    Comment


      #3
      Take him to your neuro appointment. Let him hear you describe the fatigue to your doctor, and your doctor's discussion.

      I have heard other people say they would like to deprive their spouse of sleep for a week, tie weights on ankles and wrists, then try to get thru the days.

      There is a sticky with the spoon theory which may help.

      But if your spouse wants to remain in denial that things have changed, there may be little you can do. I hope that is not the case.
      Kathy
      DX 01/06, currently on Tysabri

      Comment


        #4
        I'm sorry to hear about your situation. I felt like my wife was the same way and I told her so. I told her I would think you would educate yourself about this disease I have. Of course she said had but not as much as she should have. Today that has changed. She notices things that I try my best to hide. She's much more educated now.

        Now, with all that being said say something to your husband about getting educated. It may start an arguement but it's the discussion that you need to have. If you haven't already by the book "MS for Dummies". It makes MS as easy to understand as it can be. Invite him to join the forum. There's room for Caregivers he could learn from. It's a tough situation but it is one that can be fixed if he really cares. Anyway that's my two cents for what it's worth.

        Good luck to you and I hope things work out.
        Dx'd 4/1/11. First symptoms in 2001. Avonex 4/11, Copaxone 5/12, Tecfidera 4/13 Gilenya 4/14-10/14 Currently on no DMT's, Started Aubagio 9/21/15. Back on Avonex 10/15

        It's hard to beat a person that never gives up.
        Babe Ruth

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          #5
          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?
          First of all -- a belated welcome to you. I notice that you've been a member for a number of years, but you've only recently started making a few posts. I hope you'll find us a safe and understanding place to come back to.

          Yeah; about the husband -- I get it. I've had MS for 14 years. And, I'm married to a good guy; really I am. In a lot of ways, he is supportive, and, I believe that he has a better understanding of how MS affects me than your husband appears to. But, sometimes, I just want to have him live with my symptoms for a day or two. Then, instead of some of his pep talks, when he thinks he knows more than I do and has advice for what I should do to make things better, maybe he'd have more empathy instead.

          Here are some ideas:
          ~ 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


            #6
            Originally posted by bps25631 View Post
            How do you guys hold it together and make you spouse understand what MS does to our body?
            Those of us who hold it together do it by doing things that, right now, you think are impossible because you haven't had to do them before and don't know how. And because you think it's impossible, what I'm going to tell you isn't the answer you want to hear.

            The key to everything is understanding -- and acting from the belief -- that the only person you can control is yourself. Nothing changes until you do.

            No one can make anyone else understand anything. (Hence the age-old adage, "You can lead a horse to water but you can't make him drink.") You can offer him information, but you can't control your husband.

            Your husband isn't "the problem." Your relationship with your husband is only a symptom of the underlying problem. And you can't fix the problem by trying to fix your husband. You can only change yourself and the outmoded, unproductive thinking that doesn't apply to your life anymore.

            You can have a heart-to-heart talk with you husband and tell him how you feel and how things are going to be from now on. Then he can voice his side, and you can see if you can come to a meeting of the minds and hearts. He's free to deal with it as he decides to, and you're free to deal with his response as you decide to. Neither of you can realistically demand that the other person changes. Couples counseling might help if one or both of you wants to change. If he won't go, you can go by yourself.

            Although it probably feels like you were whacked with an "MS stick" that's made you miserable, no one can whack you with a "happy stick." No person or external force is responsible for your happiness. You can learn to make your own happiness by learning how to take control of your thinking, and direct your thoughts and actions away from things that don't help you and toward things that do help you.

            Those skills won't just appear overnight. But, by making just one little change in your life everyday, you can improve your well-being in just a few weeks. And you can do it if you're willing to change yourself. When you start to change, things around you will also start to change in response.

            Self-mastery is how people hold it together under trying circumstances. You can learn how to do it if you want to. If you need help, there are mental health professionals who can guide you. All you need to do is take the first step.

            Comment


              #7
              My husband doesn't get it, like Mamabug's he is a good, decent man who doesn't have MS. I don't think he will ever get it although maybe if I really hit the crapper he won't be able to ignore it any longer.

              I'm definitley part of the problem because I pride myself on working until I drop. How can I expect someone to understand that after working 50+ hours a week I'm so exhausted on my day off that I can barely drag myself to the grocery store? I have given it much consideration and for me I'm going to just keep working and banking my money for as long as I'm physicially able regardless of the consequences. I figure I have plenty of time to sit home "relaxing" when MS has left me so debilitated that I have no other option.

              My strategy includes not discussing my MS in detail or attempting to educate anyone about MS. If they are actually interested there is plenty of information for them to investigate independently. In my experience I think most people are quite content to remain in the dark and not have to hear the hideous details.
              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


                #8
                pennstater, you have offered awesome advice. I agree with it 110% ! jules A, ...not a big fan of your advice. If you, jules A, can carry on, albeit with increasing difficulty, that is enviable ! I feel that MS has had enough of denial and ignorance from the 'non- chronic diseased' public! I, personally, don't give a hoot about the thoughts of others and how they visualize my struggle with this 'MonSter' ! The more that we, MSers, downplay the seriousness of this 'plague', the less serious the general public perceives MS's life altering effects on its victims ! But more power to you and your determination!

                My experience with MS has been nothing but 'hell' ! I had to leave my job. I sold all of my musical equipment that I spent 40 years acquiring. I sold all of my soundman equipment that I used to record the audio for a host of HGTV shows, NBC News, CBS' 60 Minutes episodes and other various and sundry broadcast TV shows ! Thus, my feeling that everyone's experience with MS is unique and personal. For some its a horror. For others..not so much! Good luck to all

                Comment


                  #9
                  BPS...
                  You are right. This disease is awful and it does leave you feeling alone because, as others have said, it's impossible for anyone to really know how bad you feel. Although I'm no longer married, my coworkers and family are great and supportive but don't ever realize how very hard it is for me to get through my day. The pain, always feeling like my legs are going to give out, fatigue, etc.

                  I'm a SICU RN. Any downtime we get at work, I try to be upbeat and enjoy talking about what's going on with everyone. Away from work, I don't want my kids worrying. I don't want to be seen as a "Debbie downer" to anyone That being said, being that way leaves me very alone in coping with this disease. I think it's very hard for people to understand what you are dealing with, especially when you are upright, working, outwardly appear "okay".

                  Do you think your husband is in denial or having trouble coping with what MS is doing to you? Does he want to keep up the pretense that you are good so as not to have to face reality? Or does he just not understand? Whatever the reason, other people's advice of bringing him to appointments with you sounds like it could be helpful. Have your doctor explain what's happening with you and your need for rest on your days off.

                  I hope things get better for you. I'm sure having someone truly understand your feelings and allow you the rest and downtime you need would be wonderful. I hope you get that from your husband. Take care.

                  Comment


                    #10
                    I am reading something interesting...

                    Hello
                    I have been struggling with MS for 5+ years. Personally, I hate the doctors who basically tell me that I have no future. Family, friends, they don't really get it and I am tired trying to explain. A friend I know (online) who suffers from another chronic disease sent me a present of an eBook that he says has really helped him and some others he knows in dealing with his illness and the impact that it has made on his life.
                    The author, a woman, was diagnosed with MS in the 80s and is a psychotherapist. I have only read the first 4 chapters, but the things she writes and the tips she gives really hits a place deep inside, and I think it may help the people in this thread. See it at: hope.shulamitlando.com

                    Stan

                    Comment


                      #11
                      Originally posted by JerryD View Post
                      The more that we, MSers, downplay the seriousness of this 'plague', the less serious the general public perceives MS's life altering effects on its victims !
                      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.

                      Originally posted by JerryD View Post
                      My experience with MS has been nothing but 'hell' !
                      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."

                      Originally posted by JerryD View Post
                      Thus, my feeling that everyone's experience with MS is unique and personal.
                      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.

                      Comment


                        #12
                        Hi bps25631,

                        Originally posted by bps25631 View Post
                        How do you guys hold it together and make you spouse understand what MS does to our body?
                        After reading many threads over the years I get the impression my experience is different than most but I could be wrong

                        I have had MS symptoms since childhood (not diagnosed). I met my husband when I was 18 and he saw some of those "symptoms" most of which had to do with my walking and falling. He stayed around even though I was quite the klutz and we were married when I was 20 years old.

                        At the age of 24 I experienced my first severe exacerbation which started after mowing the lawn while my husband was on a business trip.

                        My Husband has seen what this disease is capable of and he will admit it scares the crap out of him. Through the years he has also been aware of when I am not doing very well, simply by knowing me and how I am on good or bad days.

                        Does he always "get" MS and what it does? Not completely, and I wouldn't expect someone to completely understand what they themselves have never experienced. My Husband does have some understanding of symptoms because he had back problems with surgery in 2008 and again in 2015. Some of the symptoms were some of the same symptoms I have or have had.

                        Have you ever considered talking to your husband about how HE feels regarding MS? This disease doesn't only affect you but him as well.

                        He might be fearful about what the future holds for both of you. If this is the case when you complain or slow down he then has to consider the disease and the effects it's having on you. Men are happy when they can "fix" a problem, they can't fix MS.
                        Diagnosed 1984
                        “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

                        Comment


                          #13
                          so so so very difficult

                          hi, I know each day, like yours, sad and tired, and alone, it is truly so much to hold, and live with. Each morning I awake and think, I should be able to, what's wrong with me, etc, Lazy, needy, etc. my voices and expectations are the ones that challenge me most. Hard to acknowledge I can't....others may be resentful, not understand, but the best lives we can have, in my opinion, is to be honest with ourselves, grief grief often, and then others.
                          i am sorry for going on and on, just want you to know, I do understand the emotions you are sharing. Wish I could fix it all for you, and me.
                          a prayer for you tonight.

                          Comment


                            #14
                            I was in your position once. I didn't have MS then, but my neck had been seriously injured and no matter now hard I tried I couldn't keep working and taking care of the baby and having dinner on the table every night with a refrigerator stocked with groceries and the laundry done and a beautiful garden AND look like a model.

                            I solved the problem by leaving. He was a terrific man who worked hard too. He was just suffering the same losses I was.

                            I look back to think what I could have have done differently. So I many things were out of my control but what I could have done was get tough about what I could do and not do, setting a firm structure so I could take care of my health.

                            Also,I should have made sure we had something we could do, as a couple without the baby, that we both enjoyed at least once a week. In our case, we were both Architects. We both loved architecture and wanted a family and our own business. We liked burning the midnight oil to finish a project.

                            Unfortunately, we lived in an area where there weren't very many true community churches. We sought solace in the social life from our son's school.

                            But, back to you, I'm sorry I got off track. MS is very sad. We are all suffering. You are not the woman he married. He is suffering an loss.

                            IMHO women are further along on the evolutionary scale when it comes to caring sick love ones. Except for some of the wonderful gentlemen on this site and I think you know who you are. Three cheers for these strong men.

                            Comment


                              #15
                              M.S. is such a game changer. It's hard to believe that you can have M.S. without feeling sad, tired and alone...at least sometimes!

                              When I was a newbee, my favorite past time at MSW was ripping on my husband about how he just didn't get it. As time progressed, our marriage toppled back and forth many times and if out of nowhere, it just kind of stabilized. I think many marriages, M.S. or not, go through rough patches. Some patches are worth working through...some are not. No right answer here.

                              I eventually realized my husband was never going to understand every nuance of my life's suffering and decided, hey, that's OK. Even my M.S. Specialist falls short...without actually having M.S. himself, even he can't fully "get it". I finally decided to stop beating my head against that same old wall, about the same old thing. What a waste of time and what was I possibly hoping to gain but higher blood pressure?!

                              If the shoe was on the other foot, and our spouse was the sick one, would we be the understanding saints we seem to expect them to be? When I got sick, our household income was suddenly chopped in half as I almost immediately went out of commission and dragged myself downtown to the SSDI office to begin the process of begging the government for a fraction of what I used to earn.

                              A substantial financial hit has taken down better marriages than mine, and you throw in all that other M.S. stuff and keeping a marriage together ain't easy.

                              In the end, I have decided as some others have mentioned, that my husband is basically a decent man doing the best he can with the hand we were dealt. Of course, I have also read terrible stories about very abusive spouses on this site that made my hair stand on end (I can only pray that those members have gotten free from those abusive situations).

                              Hugs to everyone here who is sad, tired and alone tonight. I pray that you will soon be happy, energetic, and among people who can appreciate how fantastic you are!
                              Tawanda
                              ___________________________________________
                              Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

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