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    When does it stop?

    I was diagnosed with RRMS on April 7, 2015 and have been taking Copaxone 3x per week for a month. So I am relatively new to all of this. My question is, when does this become the "new normal" and stop invading my life all the time? I am blessed with an amazing support system and my husband is truly an angel. My symptoms are purely sensory (Thank God) and consist of random buzzing/vibrating in different areas of my body. But I find myself thinking about it all the time...what will my future look like? Will my son get it? No matter what I do, even if I am enjoying myself, the thoughts sneak up...Will I be able to do this next year? I am trying to live in the moment and appreciate everything, but I am wondering when acceptance will come. Thank you.
    Diagnosed RRMS 4/7/15, symptoms for 8 months prior. Copaxone 4/27/15

    #2
    What you are experiencing is normal. You are so recently diagnosed, it is all consuming. It doesn't matter the support system or your symptoms, you have to be patient with yourself.

    You will cycle thru various emotions as you grieve your former self. My former neuro told me on average, it takes most people two years to really make peace with it all. That is not to say there aren't normal periods in there, just that it is an emotional ride.

    I read a book titled "Multiple Sclerosis: The first year" or something like that. It really helped with what to expect. My family also read it, so they had some insight. I also read MS for Dummies. And of course, people here were always helpful.

    The toughest part is being patient with yourself and giving yourself permission to feel what you need to feel as you work your way thru the grieving process. I am usuaaly a patient, calm person. When anger took over, it was a side of myself I really didn't know too well.

    Later, I could laugh at this period, my family never knew which person was entering the door. I felt like I had split personalities and cycled thru them, sometimes all of them in the same day. So it is important your family understands what is going on.

    One of the best things I did for myself was to see a therapist. It gave me a safe place to get all my fears out without worrying if I was upsetting my family. I still talked about fears with family, as they had some fears as well.

    Hang in there.
    Kathy
    DX 01/06, currently on Tysabri

    Comment


      #3
      For me, after 3 and a half years, I still think about it every day. I have no choice my body reminds me continuously. I do realize this is the norm. It's not good, but this is it. I still try to do things I know I probably shouldn't, but as long as I can I will. Sometimes I just can't and that's it. Nothing I can realty do about it. There is no cure. I do the best I can with what I got. Sometimes I feel very positive and enjoy life and then sometimes it really hits hard and am very miserable.

      It is always on my mind.

      Take care and good luck!!!!
      DIAGNOSED=2012
      ISSUES LONG BEFORE
      REBIF 1 YEAR

      Comment


        #4
        Originally posted by pennstater View Post
        ...

        You will cycle thru various emotions as you grieve your former self. My former neuro told me on average, it takes most people two years to really make peace with it all. That is not to say there aren't normal periods in there, just that it is an emotional ride.

        ...
        It might be somewhat different for everyone. For me, I've discovered that it takes me about three years until I'm done the hard grieving of a difficult loss. And, yes. There may be normal periods in there. But, even after the hard grief is over, there may also be difficult days after that, when you, again, have days when thoughts of MS invade your life all day.

        Choosing to have a positive attitude can decrease the frequency of those days.
        ~ 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


          #5
          I know that MS is always with me, but eventually it was "just there" and not my central focus. I try to focus on diet and taking care of myself and enjoying the moment. MS is unpredictable and if I spend time with the worst case scenarios, then I miss enjoying what I can do and life.

          Comment


            #6
            re: when does it stop?

            I'd kind of like the answer to that question too! The doctors suspected MS around Christmas, but I didn't get an official dx until February. I, too, find myself thinking about it constantly. Heck, it's hard not to when just rolling over in bed requires a supreme effort! I especially worry about what the future holds, my family is wonderful, but my husband is 84, and has his own limitations. My kids are just 19 and 22. (yes, I am married to a man old enough to be my father) I don't want to become a burden to them. I'm sorry to say, I don't think it ever really stops, but there are still bright moments. An unexpected hug from my reserved son, game nights with my family, shopping for a wedding dress with my daughter, who's getting married next year. I try to concentrate on these moments and push the negative thoughts to the back burner. Not easy, but I keep trying.

            Comment


              #7
              I was DX in 1986 before there were any real "treatments" for MS. Over the past 29 years my RRMS has changed. You just need to keep a positive outlook on life. And it is great that you have a good support system.

              Good thoughts and stay in touch with this website. Lots of support here.

              Toot
              toot

              DX 1986 currently on TY
              Copaxone 2003 to February 2015

              Comment


                #8
                I cried at least once a day for the first six months. Eventually you make peace with it, especially if your disease isn't overly aggressive.

                It really helped me to visit bulletin boards back then, about 15 years ago. The boards were much more active then, though. There were two in particular which had so many people and posts, it was a Godsend. Got good info and good support. It allowed me to stop talking about and thinking about MS in real life. I would wait until I could visit a bulletin board.

                I don't know why the boards are so less active now. Braintalk and Neurotalk are a shadow of their former self. MSWORLD decided to moderate every post which is frustrating and seriously cuts down on back and forth dialog. But maybe members prefer it that way.

                Comment


                  #9
                  You'll think about it every day, and read everything you can find for a long while, then with any luck, and continued reasonable health your general MS-iness will gradually fade into the background.
                  You're right, Poolwatcher. I spent the first year post-diagnosis at Braintalk, and it ain't what it used to be.

                  Comment


                    #10
                    Please try to stay positive. I was diagnosed many years ago, but stayed well for years and years. Indeed, even as I am now I can still enjoy things. I would have enjoyed those first 10 completely well years so much more if I had been able to be more positive. Many people with only sensory symptoms to begin with never get really poorly. I too kept thinking about it, and testing a foot as I woke up to see if it still behaved!
                    The odds are you will stay perfectly functional, and bear that in mind. Good luck!

                    Comment


                      #11
                      I've been at this since 2001 and am still in denial! But I have to say, I was relieved with the diagnosis because it meant all my doctor visits weren't wasted. I really thought I was imagining things. When I got that call telling me they were certain I had MS I went to the clinic and hugged my doctor.

                      You'll get it.
                      Marti




                      The only cure for insomnia is to get more sleep.

                      Comment


                        #12
                        Isn't it sort of ironic, that we're happy to get an MS dx? But, yeah. If we've got it, we've got it. And, it's better to know than to be stuck in limbo.
                        ~ 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


                          #13
                          Originally posted by Boymom123 View Post
                          I was diagnosed with RRMS on April 7, 2015 and have been taking Copaxone 3x per week for a month. So I am relatively new to all of this. My question is, when does this become the "new normal" and stop invading my life all the time?
                          I totally understand wanting to know, but you're the only one who can answer this question, and it takes time. I would say it took me a good few years of denial, then dealing with more frequent flareups, to begin to accept it.

                          Then, you may experience a setback or a larger/longer flareup and the grief will start again, even though it may feel a bit different. The new normal becomes another new normal, then another new normal, and on and on like a Chinese box.

                          I don't think the advice to "feel positive" is useful when you're dealing with deep emotions like sadness, grief and anger. Even if you have a strong support system, talking to a therapist is so helpful – sometimes they are the only people who can be objective and handle the true force of our feelings and help us find that valuable perspective.

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