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How do you deal with MS and it taking over your life?

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    #31
    Originally posted by JerryD View Post
    Sorry Mamabug and Dexter,
    I can be blunt, many times I am. I can't see anything but misery when it comes to a life with MS. i wish that I could see the 'glass half full' but its full of crap! My way of thinking isn't the 'best' way, it's MY way and I wish that I could change it. So having MS has been a trial by fire for me. MS sucks and that is it for me.
    Jerry, it's OK to be blunt, when blunt is honest. It really is. If you are feeling like your life with MS is crappy, then, yeah. Say it. Because it is your way of looking at it. It's not wrong for you. Just as my way is not wrong for me. We are all individuals. We are at different places with our MS, and, even if we were all at the same place, we simply have different perspectives.

    No apology necessary. And, yeah. I have days, too, when I see the glass as half empty. They don't occur often, for which I am grateful. And, although, to a large extent, I tend to believe that our happiness and contentment is our own choice, when I am having a bad attitude day, it truly doesn't feel like a choice. So, I do get it. Sometimes, life is just hard, and that's the way it is.

    I do continue to hope, for both of my negative-thinker MSWorld friends, that your perspectives will improve, even though your MS will likely not. You will be a happier person if it does.
    ~ 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.

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      #32
      Oh, and DexterM. I just read this thread; it sort of answers your question too.
      http://www.msworld.org/forum/showthr...r-happen-to-me
      ~ 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


        #33
        Originally posted by drmarc View Post
        Do you want the truth or what others tell themselves to feel better. MS is a horrible disease and when you start to progress it becomes even more horrible. There is no upside to this disease and when the MS Community stops conveying that this disease is anything but a nightmare, maybe the world will listen and find a cure.

        Even before that German plane crashed in the Alps, I used the analogy of having MS to being in a plane that is about to crash. You can't stop it, you can't make lemons out of lemonade, there is no hope that you will be saved, and as every second, minute, or period of time goes by you get that much closer to your death.

        MS or as we are facing SPMS is a daily struggle in just getting out of bed, putting on a pair of socks, getting to the bathroom before it is too late, coping with excruciating neuropathic pain every second of every minute of every hour and no drug can stop it.

        We have lost our life, the life we planned, and the life we worked so hard to have. We, like those in the plane, are terrified, angry, helpless, and in a nightmare. Anyone who tells you that having MS is "...not that bad. Just use a wheelchair," is lying.

        It is about time that those with MS and those who love those with MS stop perpetuating the myth that having MS is not that bad, that having MS is something you can adjust to, that having MS is something you can live with because it is NOT!

        I hope you can handle the truth.
        Your response makes me feel very sad for you! Luckily many of us do not feel the same. Do you really think your response is helping anyone? This is a site called patients helping patients... You go mama bug! Thank God someone like Stephen Hawking's didn't have someone like you to go for advice to.

        Comment


          #34
          Hang in there!


          Dexter Morgan, I am a mom who has a son with MS. He is22 and was diagnosed at the age of 13. I’m not going to lie, it’s been ahell of a ride. But, as I tell him everyday, we are all on thisride together, and come hell or high water, we will get through it. Thisadvise goes to you as well Dexter! Find a support group. Dothings that you feel comfortable with. Also realize that MS canmake your depression worse (you can have the psychological depression…and alsoif you have a lesion in a particular area, it can make the depression feel evenworse).

          After this last relapse, my son was suffering from horriddepression. His friends just didn’t understand his illness (his fatigueis pretty high), and he was pretty much confined to the house for a year. Xbox and TV (and me) were pretty much his only companions. I read him theriot act, like I’m going to read to you. You may have MS….but MS doesn’thave you!! Live your life as much as you can. Enjoy your day and exploreyour world. Join clubs that are of interest to you. Even a coffeegroup. Don’t listen to people like “Dr” Marc, and those that want to make you bitter. My son has gone through all the problems that can be associated with MS. Yes, I've had to help him go to the washroom, I've had to help him shower and get dressed. But as I've told him. This disease has your immune system at it's mercy. Not your heart, nor your soul. Life is much soooo much easier to get through witha smile on your face and love in your heart. Everyone has some type ofburden to bear, whether it’s MS, cancer, losing a child or parent, moneyproblems, etc. Some problems don’t seem so significant in comparison, butto the person experiencing those problems, they are life changing!

          Keep your chin up beautiful!! Remember MS does not ownyou! Let your light shine from within…we are all blessed to have you onthis earth with us J


          **edited by moderator in compliance with guideline 1. "INTERNET ETIQUETTE: Show respect for others at all times."**

          Comment


            #35
            Originally posted by Picture me View Post
            Your response makes me feel very sad for you! Luckily many of us do not feel the same. Do you really think your response is helping anyone? This is a site called patients helping patients... You go mama bug! Thank God someone like Stephen Hawking's didn't have someone like you to go for advice to.
            Just to clarify, Patients helping Patients can be done in many ways, including speaking the truth to validate those patients who feel angry because our government does not do enough to find a cure for this the most debilitating disease known to man. Patients helping patients is not always about fairies and unicorns.

            Comment


              #36
              Originally posted by DexterMorgan View Post
              How do you guys deal with MS and trying to not take over your life?
              I am thankful every day. I am thankful I got out of bed, took a shower(not that I need one, it's just because I can) I'm thankful I made my own food, washed the dishes and made a cup of tea. I'm thankful for my husband. He does so much for me. How is it that I am so fortunate that he married me? I'm thankful I'm still in my lovely home, still taking care of myself the best I can. Though I cannot walk on my own, I'm thankful I still can.

              I focus on the present. I'm not what I was(who is?) and I just have to let that go, though it isn't easy. And I have a good idea what's in store for me, so I do my best not to dwell on it. Breathe and be here, now. It wasn't like this before and it won't be like this in the future. But right now, I think I'm doing pretty darn well. This is a daily practice.

              As much as I'm preaching being in the moment, you need to have plans for the future in place. Think of different scenarios and what you will need to do. Having a plan takes away some anxiety.

              Being a parent myself, I understand how your parents feel. They love you, care about you. They are anxious and worry about your well being. It's what parents do.
              But you are old enough and the primary thing here is that you FELT well enough to go! Just do yourself (and your parents) a favor and don't go anywhere alone. You just might need some help.

              My advice: Go to school. Even if it takes you a while. You'll wish you had if you don't. Take a yoga class, it may do you good. Live your life as it is now, not as it was or what it could be. Don't sit around waiting for progression. It may be 30 years before it gets to that point!

              Comment


                #37
                Thanks for your responses. This thread (started over a year ago) will now be closed.
                Kimba

                “When you change the way you look at things, the things you look at change.” ― Max Planck

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