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Accepting the unknown

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    Accepting the unknown

    Hello friends,
    For quite some time now I've been reading posts pertaining to the inability to accept/acknowledge not only the unpredictability but the troubling progression that afflicts many of us with MS.

    After thinking about this for a bit I've come up with a possible reason why some are better able to deal with the lack of control over the course of the disease. Parenthood.
    When you've raised children you have given everything you have to instill values and ethics that are important to you. You do and say all the right things and yet as the children grow up you lose control over them. You can't fix their problems and you have to sit back and allow them to make their own mistakes, hoping that they will learn a valuable lesson.

    So as a MS patient we do what we can to prepare for the future such as DMD's, exercise, good diet, avoiding stress, etc. But at some point, nature takes over and we accept that goal and dream adjustments are necessary. But we're still here fighting the good fight. Just my .02.

    Paula

    #2
    RonPaulaD,
    This I an interesting theory. I'll go ahead and chime in here and say that parenthood is what gives me the most trouble dealing with the diagnosis. If I only had myself to take care of I would feel much better about it all.

    Instead, I feel guilty about not having the energy to keep up with my kids. I am terrified that they will end up with a diagnosis of MS themselves in the future. I have to explain everything logically to them and show no emotion about it because I don't want to scare them when they're too young to understand. I can not take them places they want to go as I can't afford it because I have to pay a lot for my DMD and the constant stream of doctors appointments. I have to pay extra attention to how I present myself around their friends parents because I don't want them to think I'm drunk, stoned or stupid because I am too tired to communicate properly. I have to be conscious of every single step I take on a bad day so I don't embarrass them by walking like a cross between a worn out cowboy and a zombie. I worry a lot about how my disease could force them to grow up faster than they need to. I constantly stress about how I will be cared for in the future as I will never, ever let them become my caretaker.

    So, while parenthood can be a great lesson in relinquishing control, it can also cause an immense amount of stress. Especially for us who's children have many years to go before they fly to nest.
    “I’m pretty and tough, like a diamond. Or beef jerky in a ball gown.” - Titus Andromedon

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      #3
      Watching all the craziness in our world has led me to think the world needs better parenting. I'm almost afraid to watch the evening news for fear there will be one more story about a school shooting, missing children, chaos around the globe etc etc.

      Parents need to be on their game with every aspect of raising kids, now more than ever. So many pits our young ones can fall into in this time in history.

      I agree, that taking care of yourself and facing something like MS would be so much easier if we only had ourselves to worry about. But bring a family into the tough situations and everything changes. I understand the challenges of modern family life. Things are not like they were back in the 50's and will never be that stable again.

      There are no simple answers. Everyone is different and acceptance is harder for some. Maybe those people didn't have anyone to turn to when they were growing up. Or maybe they have been abandoned as adults with new and scary health issues. Just do your best. Ask for help.
      Marti




      The only cure for insomnia is to get more sleep.

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        #4
        Very good point. I was diagnosed when my youngest was a freshman in college and up to that point I had little to no symptoms. My work as a parent was essentially done. Now I have two wonderful adult children who are able to "give back" as my husband and I need them.

        Paula

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          #5
          Hi Paula,

          I like your analogy.

          I believe everyone accepts/acknowledges this disease differently based on life experiences and the coping skills they have or don't have.

          I believe "it is what it is" and do the best I can to not allow my main focus to be this disease. This is simply how I have been for as long as I can remember.

          What helped me the most is my children. They were born after I was diagnosed and due to them my focus became them and not myself. Don't get me wrong, I took care of my self but this disease was not in the forefront of my daily life ~ I was too busy with life to be consumed by thoughts of this disease.

          IntoDust:
          I have to be conscious of every single step I take on a bad day so I don't embarrass them by walking like a cross between a worn out cowboy and a zombie.
          This is how you feel about yourself and more than likely doesn't represent how your children may feel.

          My children grew up with a mother who had MS before they were born and never were they embarrassed.

          My daughter was involved with High School choir and drama and I went to her performances. There were times some of her peers asked why I was showing up drunk My daughter would explain to close friends that I was not drunk but have MS. Too anyone she wasn't close to she just gave them one of her "looks" and walked away without explanation. I have MS magnets, when my son got his drivers license he asked me if he could put one on his car, I said yes.
          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

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            #6
            This may be trying to put a "result" on a disease where we probably shouldn't do this because everybody's story/disease course is different.

            I actually believe my son gained things from having a parent with MS which has helped him in life.
            He was probably 10, and I was going through a rough patch, and my Dad would go to the grocery store and ask if I needed anything, but instead I'd make a list for my son and give him the money and Grandpa would help him get the groceries. I always told him to get one thing not on the list that was for him, something that he wanted. Fast forward to age 16, and once he could drive, he did the grocery shopping for the family every week, and he wouldn't even need a list. He'd just check the cupboards and the fridge, and go get groceries. It took one thing off my husband's shoulders and my son seemed to enjoy doing it...always with my reminder to get something special for himself.

            Fast forward ten more years after he'd been married for a couple of years, and his wife asked me about the tendency to send him to the store with a list, and he always buys one more thing, an impulse buy. I had to 'fess up and say "Blame that on me, he learned the habit years ago."

            But grocery shopping being just an example of varied "chores" our kids do for us when we're unable to do them. It makes them better adults, more confident in skills needed to live in the world, and better spouses or friends. Plus illness is not unusual for them, so if a friend or acquaintance is ill, they have more compassion toward the behind the scenes issues that might be happening in their lives.

            So that's my take on parenthood. The family is flying here right now, for the holidays...now grandkids and how they get treated...that's a completely different story !

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              #7
              Interesting theory. I think I would be an exception. I never had kids and think I have done a pretty good job of accepting MS and living with the unknown.

              That being said, I had a good neuro who was as concerned about my mental health as he was my physical health. When blind sided by diagnosis, he sent me for a 2nd opinion by well known MS doc. Harder to live in denial that way. He told me I had to be my own best advocate and educate myself on MS. He lent me books on MS from his library. When I struggled, he made sure I got help.

              I was also able to share with family and close friends and had their support. Still do.

              I also think this board helped. Some people are no longer active, but I learned so much from them. I learned from their posts, as well as the generosity in their responses to my questions. I continue to learn here.
              Kathy
              DX 01/06, currently on Tysabri

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                #8
                I’ve never wanted kids so I can’t speak for how a kid would change things, but i don’t think a kid would change anything for me.

                I was raised to be 100% independent so the idea of losing that is terrifying. at least for me a kid would make everything worse since I need 100% of my free time to be focused on working out, eating right, sleeping, and relaxing. I don’t think I’d be able to focus on a kid

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                  #9
                  Originally posted by RonPaulaD View Post
                  After thinking about this for a bit I've come up with a possible reason why some are better able to deal with the lack of control over the course of the disease. Parenthood.
                  Thank you for your very thoughtful post.

                  As a 56 year old woman without kids but who has participated in the lives of several, I can say I agree that parenthood would definitely teach you the responsibility and maturity with which to deal with the problems MS throws at you. It would give you the tools to cope with a lot of situations that feel like they are going off the rails. And it would enable you to "let go" of things when it is so hard to do so. You have let your precious baby birds take flight without holding them down - why shouldn't you be able to hold strong faith in yourself and your body as you cope with an unpredictable disease like MS?

                  But there are additional things in life that can teach us how to be self-reliant, respectful of others, responsible and productive in society. For example one thing that has taught me empathy, resilience, and responsibility has been a heaping helping of loss.

                  How - even why - do we cope with MS? It is a wonderful thing to think about and discuss.
                  All the best, ~G

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                    #10
                    Interesting perspectives and experiences. I always just figured it came from being raised by a German so unless literally hucking up a lung business moved forward as usual.

                    My life hasn't been easy and there was never the expectation that it would be which probably did me the favor of acceptance and being able to quickly shift gears as needed.
                    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

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                      #11
                      Originally posted by Jules A View Post
                      I always just figured it came from being raised by a German
                      Good point! I'm 1/4 German and will analyze your idea thoroughly...
                      All the best, ~G

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