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  • Anonymous
      Post count: 93172

      Margie,
      You have come to the right place. Several on this BB have been where you are.
      It is O.K. to vent here. Do not feel ashamed about needing support-especially
      from those most important in our lives. There are many here who will
      give you better advise than I am able to but know that we will listen
      and those with knowledge will read your post and share all they are
      able to. It sure can be hard for spouses/SOs to understand that their
      strong partner is in need of not only of doctors but of much understanding,
      their support (in many ways) and extra TLC. It is difficult when
      we have been strong-especially for a long time-for them to understand.
      Knowledge/education may be helpful for your spouse and if you go to
      the home page you can link there to the NGDF (and more) to get additional
      info to print out for your other half to read. I’ve been married 20 years and I hope that
      I’m still educating because more and more I need that support. Our prayers
      for their understanding are with you. It is good to seek out the additional
      professional advise/help. Know that others on this BB will respond to you
      as soon as they are able.

      Julie

      Anonymous
        Post count: 93172

        I feel I just have to talk with someone. It seems my family does not
        care how stress effects me. I can not tolerate their selfish attitudes
        any longer.I feel as if for my own sanity I need to see about
        getting on meds for depression.Right now I have so much disrespect
        for my husband. We have been married for 13 yrs. Our marriage has
        deteriorated since GD.He would not accept anything was wrong even
        after being diagonoised. He resented having to do house work,etc.
        When I needed help he was never there,he had friends convienced I was
        crazy because I couldn’t get warm no matter how hot it was.Having
        memory problems didn’t help at all. Before GD,I was always the strong
        one who made 3 times he $$’s.Stress is harder to take with GD so on
        1/2/97 I sold my business. I had never been sick before GD and I had
        no mental support from family and I can’t began to tell you how depressed
        that makes me. I have so little family period.I had my 28 yr. old son home 3wks at Christx time. He
        was gone out of my life for 14 yrs and the only excuse he
        gave was he wanted to grow up faster at his Dad’s. He is very immature
        and just started college 1 yr. ago. I have paid a good majority
        for his support in the last past yr, yet I didn’t get one Mother’s Day
        card or any cards. All the years I missed out of his life I never got
        one picture or phone call. I cut his funds off then all he wanted to
        do was party for 3 wks. He didn’t want to know anything about GD.
        Sometimes I feel like running away from home myself and that’s what
        I did this weekend. I didn’t even take my son to the airport. I have
        given up hope on getting any support I need from family. I will ask
        my dr. about meds ASAP and see if I can talk with a shrink before I
        ditch my 4yr. old acting husband. I realized from this BB that
        depression is nothing to be ashammed and many of you take meds. The
        extra 60lds, joint pain,fatigue hasn’t helped along with my big frog
        eyes. Through you all,I have seen you accept yourselves and most of
        all I have come to realized we deserve family support. We are not
        weak people just because our bodies become weak. Yes, I think my GD
        has been stressed related. For those who may feel this is not a place
        to hang your dirty laundry out,I’m sorry if I have offended anyone.
        I am not usually so negative and thanks for lisening.
        Margie from Florida

        Anonymous
          Post count: 93172

          Julie thanks for the prayers. I have already tried to supply this
          family with all kinds of books. I even tried to get them to read
          some of your stories but the truth is they don’t want to understand
          about GD. They only understand I am making one forth of what I use
          to make and their fun money and college is gone.I am a lot better
          than I use to be but I have had to fight my family to get better
          and they have not helped willingly. Example: I reacted to odors
          such as after shaves, cleaner and perfumes. My husband would use
          aftersave or something then say that he didn’t and then tell friends
          I had mental problem because I would get upset at him.These type
          rummors carry quick and my slurred speach and dizzyness didn’t help.
          I even sounded drunk over the phone. The sicker I got the more
          childlike he became. I am much better but I can’t seem to forgive,
          maybe because he is still child like in many ways. I am hoping time
          and a little cancelling will help. I felt alone and abandoned
          because in 13 years I never once ask for help and when I needed help
          he couldn’t give it.Appointments for help for me has been made. Prior
          to GD I did have a lot of stress in my life. For a year I took care of
          my stroke patient mother, lost 3 sisters to cancer within four years
          right after my mother and we won’t even get into alocholic ex-husband
          who convences and lets children have complete freedom with a price
          tag that took away a mother who needed them. Yes, I truly think stress
          was a big factor. I always helt in my stress and covered the pain
          with working very hard and call myself dealing with it.Today is better
          but I know I need help with depression from the past and GD.Thanks for
          understanding. Margie

          Anonymous
            Post count: 93172

            Sounds like you’re having a very rough time of it. I was feeling very
            frustrated for a while (and sure the anxiety problems were going to
            lead me to becoming housebound) so I went to a therapist. This was a very
            hard move for me…I just have hangups about that sort of stuff. Anyhow,
            he believes that anyone with a serious & bizaare illness like this should
            dump somewhere safe! The therapist and his wife are going through her Lupus, and
            it seems that your husband’s reaction is part of the norm for men in this
            situation. Anger, denial, trivializing it… Eventually they are supposed
            to come to some sort of acceptance and resignation. Of course, it really
            rots that when they’re having their anger and resentment is when we need
            compassion and support the most!!! As I started to feel better, my husband
            began to chill out. (better late than never!) Now he’s very compassionate and
            understanding… I could’ve used that a few months ago during the worst of it,
            but at least understanding why he reacted that way seemed to help.

            Maybe you could talk to your pastor or a counsellor and unload. Or continue
            to unload here!!! It sure feels good, doesn’t it?

            I’ll be praying that your husband quickly moves into the acceptance and support
            phase!! Glynis

            Anonymous
              Post count: 93172

              Dear Margie, I thought about e-mail instead of answering you on-line,
              but then I don’t know how much privacy you have. Anyway, I take it your
              family does’t read this BB, so here I am to just let you know that your
              plea for validating the difficulty and far reaching impact of this illness
              It is difficult even with supportive family. Your husband sounds like he is frightened
              that if he acknowledges that you are sick, then you might get worse.
              His denial isn’t uncommon, but it isn’t helpful. It sounds like you
              have not prioritized taking care of yourself, you were a reliable source of
              support for others, and now they have a big adjustment to make. Trust that they will make it.
              But I would tell your husband, each time he makes inaccurate comments, that he is wrong
              and that it hurts you and doesn’t help. Hand out a flyer on GD to his friends that receive his comments.
              But most of all take care of yourself. I think it is so great that you are asking for professional help.]
              It makes sense to go to someone who is already educated on the troubles
              of disease, relationships etc, and talk in really safe place. Sometimes sickness just brings problems that have always been there to the surface, then you have a
              beter chance of working things out and growing together. Best Wishes to you. I’m sure better days are coming as you get the GD under control. Jeannette

              Anonymous
                Post count: 93172

                Dear Margie,

                Only those who have walked in your shoes can understand what you are
                going through. I can understand all the GD stuff. Since I have a very
                supportive family, friends, and work situation, I can’t fathom how
                difficult things are for you. I know how much I depended on them.

                I hope you can find professional help to get you through this. You
                need someone to help you figure out how to get through both the GD
                and your family situation. When I was 30 (many moons ago :)) I was
                in a severe depression and saw a phychologist for 2 years. Did the
                anti-depressant drugs and the whole bit. As hard as it was to admit
                I needed help and as difficult as it was to go through therapy,
                I’m so glad I did it. I learned so much about myself and my husband and
                learned good coping skills so that all the hard times after that were
                easier to get through. Not easy, just easier with better skills.

                You deserve love and support to get through GD. I’m praying that you
                find both.

                DonnaN

                Anonymous
                  Post count: 93172

                  Margie- Marriage is a very hard thing- one of the only reasons to keep at it is SUPPORT. We all need support. You’ve been the strong one, the one to lean on- now use the strength for yourself. It’s Margies turn for support. If you can’t get it from others, get it from yourself. Don’t let anyone give you crap. Don'[t let anyone ruin your self-esteem. Use your strength to make you strong. My husband can be a pain in the butt-but his support of me through this has reminded me of why I love him. And why I need him. Hang in there. KarenG

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