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    My husband!!!!

    Ok yes I have MS but everytime you get angry with me do you have to bring it up and say it is ruining your life???

    What about it ruining my life??

    I am sorry but yes I cannot do as much as I used to and yes a lot of times I am tired and don't get everything done!! Yes my memory is going!

    Do you have to remind me everyday?????

    Sorry I am just in a mood this morning and needed to grump!!

    #2
    Your husband does not understand because you still look the same. It makes it difficult to imagine your struggles because all he see's is his wife.
    He is probably thinking, You look fine just get up and go.

    I do not know if I ever could have understood it before I lived it. How can someone feel crappy forever?

    It is not uncommon for your spouse to not understand.
    The more I read the more I think a large number of us have a spouse that just can't accept or understand life with MS.

    My life has become more peaceful since I have accepted the idea, she will never understand the challenges I face.
    But the lack of understanding and compassion has had a negative effect on our relationship.
    Although I can rationalize her flipped attitude it still tic's me off.

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      #3
      tommylee you hit the nail on the head. Thanks

      Comment


        #4
        I COULD HAVE WRITTEN BOTH OF THESE! THEY ARE EXACTLY HOW IT IS IN MY HOUSE! i can definately relate, i wish i had so advice, but sadly i do not.
        hunterd/HuntOP/Dave
        volunteer
        MS World
        hunterd@msworld.org
        PPMS DX 2001

        "ADAPT AND OVERCOME" - MY COUSIN

        Comment


          #5
          I'm sorry you find yourself in this position. I know it's hard for me to understand all the changes and this is MY BODY. I can't imagine how hard it is for a spouse to fully comprehend. Have you considered couples counseling?

          Have you ever seen a TV show where they put a man in a "pregnancy suit?" The suit is weighted and cumbersome so he will have some idea of what carrying a baby is like?

          The suit supposedly causes all of the following:
          • Weight gain of 30 pounds (13.6 kg.)
          • Fetal kicking and stroking movements
          • Shallow breathing and shortness of breath
          • Increased blood pressure, pulse and body temperature
          • Bladder pressure and frequency of urination
          • Low backaches; shift in center of gravity; waddling
          • Fatigue, irritability, and much, much more!


          Unfortunately, there isn't a device to mimic MS for a quick reality check. Maybe a sumo suit where every aspect of life is more cumbersome ... funny for all of about 10 minutes.

          I truly hope things improve for you and he finds a way to lift you up and not tear you down. I wish you well ...

          Comment


            #6
            Hi lisa - So sorry your husband is less than understanding. It is certainly a conundrum and many of us have been in your shoes. Going to couples counseling is a good idea only if your husband is willing. You might consider going it alone if need be.

            Another suggestion is to have him go to your appts with you. Is he willing to do this? Do you have reading materials about MS that he would be willing to read? When one becomes more knowledgeable, one becomes more understanding!

            Here is something that is informative and a bit humorous (dark humor) to print out and share with your husband. http://www.howdoesmsfeel.com/how.html

            I sincerely hope things improve at home. In the meantime, you can come here and be grumpy any time!
            1st sx '89 Dx '99 w/RRMS - SP since 2010
            Administrator Message Boards/Moderator

            Comment


              #7
              Seasha, I love that site!

              Lisa, I'm sorry he just doesn't understand.

              Comment


                #8
                I have heard." You don't realize how frustrating it is to watch somebody you love so much go through everything you do." Translated, means I'm really pissed off because I got cheated out of a normal life. We have been married for 25 years and I have had MS for 20 of those years and in a wheelchair for 19.

                I was fairly independent, participated in life, and did everything possible to maintain a normal life for as long as possible but about six years ago I had a huge attack that caused my MS to progress rapidly and at this point I am left with some usage in my left hand, my brain and my mouth. I have a caregiver that comes in 40 hours a week and does all of the housecleaning, all of the laundry and most of my care. And even though I need help with pretty much everything there is little left to do when he gets home, except give me medications.

                I still manage the money and make sure he always has the money he needs to buy the things to help him deal with the frustration that my situation causes. This included a $36,000 musclecar, two Harley-Davidson's and two girlfriends. And he still blames me for his unhappiness.

                I went to therapy to deal with the affairs and I went to therapy to deal with him and in that process, I gained so much personal growth. He finally started getting real about his own weaknesses and we started to put a lot of work into our relationship and even though it is still shaky at times we are 100 times better than we were before. So if there is any advice that I could give you, it would be not to blame yourself and if you can get therapy for yourself please do so that you can be prepared to deal with whatever happens down the road.

                Hugs and best of luck!

                ** 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. **

                Comment


                  #9
                  how long has your husband been dxed? I only ask because that was how my wife must have felt early on in my adjustment period.

                  Long story short we both ended up landing in the middle meaning I go above and beyond when i am feeling good (in ms standards) and she is more understanding when I am down and out....some rough years getting there but we have made MS work for us and have a new normal.

                  Ms is a lot like being in a being in a country where you can not speak the language. I never used the word fatigue prior to having ms but if i did not have MS I would probably relate to it like being tired or after working out for an extended period of time. Having MS fatigue is like not having enough energy to move without extreme determination.

                  As a spouse the best thing my wife did was not let me "milk it" or give into the disease. The one thing she had to learn was that sometimes I just needed a nap or some stress free time. It is all about balance and I say vent if you need to vent...Honest communication will ultimately help you achieve middle (from my experience)..It took me getting past the frustration that nobody understands me to get to a point of being empathetic to those around me.
                  First symptom 2000, dxed 2004

                  Rebif 04-06, Denial 06-07, Rebif 07--9, Copaxone 09-13, Tecfidera 13-?

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