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    A long long time coming.

    Well I shall start with the filthy business, diagnosed with RRMS in 2000, recently my doctors and I are thinking moving into SPMS. So yay.

    I have never really used any support before, just was honestly in denial for 15 years, now im acceptingish, and with that Im losing my motivation. (or energy, MS Fatigue sucks)

    I have 2 beautiful daughters a beautiful wife and a stepson anyone would be proud to call theirs. I am a mental health counselor by trade, and I am learning to work on and build stringed instruments. Anything to work on my coordination I am losing. I do not know what I am looking for in this place, however I hope I find it. I have never really felt comfortable talking about MY ms to anyone really. I can give an overview of my symptoms, my medications, treatment plans, and changes in my physical well being, but I have yet to feel like I can tell someone how I feel without thinking in the back of my mind that they doubt I really have it, or that Im making it sound worse so I get sympathy, or the most annoying of all, "oh yeah i know how that feels", or "Im tired too, I just make myself get up and do it!".

    Maybe my issue is I have never really talked to anyone who may have a clue of what it is like. One of my bigger fears and causes not to discuss any of this is how I will feel discussing things that are difficult for me to deal with to people who are so much more involved than I am.

    Now that I have read what i wrote my anxiety wants to delete it all and just say Hi! So that seems like too much work, so I shall stop here, and see if anyone can decipher this mess.

    #2
    Hi Luthier and Welcome

    I'm glad that you didn't delete your post!

    It made sense to me, and to most members, I'm sure.

    Share what you want to, when you want to.

    Take Care
    PPMS for 26 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

    Comment


      #3
      Originally posted by Luthier View Post
      I can give an overview of my symptoms, my medications, treatment plans, and changes in my physical well being, but I have yet to feel like I can tell someone how I feel without thinking in the back of my mind that they doubt I really have it, or that Im making it sound worse so I get sympathy, or the most annoying of all, "oh yeah i know how that feels", or "Im tired too, I just make myself get up and do it!".

      Maybe my issue is I have never really talked to anyone who may have a clue of what it is like.
      Hi Luthier and welcome! Thanks for being candid with us. We honestly get what you're saying and you've come to the right place for sharing your thoughts with us. I was in your place once and didn't know where to turn, but MSWorld was a great safe place to air everything related to MS. And still is!

      We hope you continue to share in your journey and ask any questions you may have!
      (I have moved to SPMS too. Since 2008 or so.) Hoping for you that full acceptance will eventually come your way. For me, it meant staying in the present and not looking backward as to what was before. Accepting what I can still do, albeit maybe differently

      Again, welcome!
      1st sx '89 Dx '99 w/RRMS - SP since 2010
      Administrator Message Boards/Moderator

      Comment


        #4
        Welcome Luthier!

        Your post made perfect sense to me. I think we all can relate. Even if you have a supportive spouse, family and friends, noone gets it like someone who has MS.

        I have mostly invisible symptoms, so I understand the feeling that some may think faking or no way you can have MS. I also get annoyed with the "me too". With the fatigue, I did eventually try to explain it so the important people in my life would get it.

        I do hope you find some support and friendship here. It can also be a very educational and informative site. Hope to see more posts from you. Glad you found us.
        Kathy
        DX 01/06, currently on Tysabri

        Comment


          #5
          Think I'm there with you

          Originally posted by Luthier View Post
          Well I shall start with the filthy business, diagnosed with RRMS in 2000, recently my doctors and I are thinking moving into SPMS. So yay.

          I have never really used any support before, just was honestly in denial for 15 years, now im acceptingish, and with that Im losing my motivation. (or energy, MS Fatigue sucks)

          I have 2 beautiful daughters a beautiful wife and a stepson anyone would be proud to call theirs. I am a mental health counselor by trade, and I am learning to work on and build stringed instruments. Anything to work on my coordination I am losing. I do not know what I am looking for in this place, however I hope I find it. I have never really felt comfortable talking about MY ms to anyone really. I can give an overview of my symptoms, my medications, treatment plans, and changes in my physical well being, but I have yet to feel like I can tell someone how I feel without thinking in the back of my mind that they doubt I really have it, or that Im making it sound worse so I get sympathy, or the most annoying of all, "oh yeah i know how that feels", or "Im tired too, I just make myself get up and do it!".

          Maybe my issue is I have never really talked to anyone who may have a clue of what it is like. One of my bigger fears and causes not to discuss any of this is how I will feel discussing things that are difficult for me to deal with to people who are so much more involved than I am.

          Now that I have read what i wrote my anxiety wants to delete it all and just say Hi! So that seems like too much work, so I shall stop here, and see if anyone can decipher this mess.
          I'd say that one never finds a concrete answer to the questions that come with this disease. I'm starting to believe that I was SPMS when I was diagnosed in 2009. Just lived most of a life with it. Doc who did a second opinion on diagnosis said I probably had been living with it for 16 years; the math fits, a bout of mono in 1981 (just before my 20th birthday) fatigue and numbness starting in my feet and legs is what got me to a doctor.
          Today I put very little faith in the docs. I spent 3 careers and a lot of time before diagnosis, now I just need to move forward.
          It's not gonna be easy, but there I go.
          Dave Hall

          Comment


            #6
            [QUOTE=Luthier;1523579]I do not know what I am looking for in this place, however I hope I find it....

            I have never really felt comfortable talking about MY ms to anyone really....

            Maybe my issue is I have never really talked to anyone who may have a clue of what it is like./QUOTE]


            Hi Luthier,

            Maybe it would be better if you just continue to read threads, familiarize yourself more with the site, click on members profiles, etc.

            And at some point you will read a thread or a post that will trigger something. At that point you will find yourself responding with words that can possibly help another.

            And then you will realize.... You're talking to someone, about something, that you both understand... or at the very least are trying to help each other to understand.

            Comment


              #7
              Outside of this forum, I don't really talk about my MS, not even with my wife. Even some of us with MS won't fully understand what another might be going through if we haven't experienced it. I have found that even when someone asks about it they usually just want to talk about their woes.

              This is a great group of people who are caring, understanding and encouraging. Stick around a while and browse through the forum. It's been around a while and has lots of useful information. Take care.
              The future depends on what you do today.- Gandhi

              Comment


                #8
                Hello Luthier and welcome to MSW. I found caring people and loads of good information when I joined.

                I hope you come back often, I believe you will soon feel more comfortable about sharing.
                God Bless Us All

                Comment


                  #9
                  Hi Luther

                  Originally posted by Luthier View Post
                  Well I shall start with the filthy business, diagnosed with RRMS in 2000, recently my doctors and I are thinking moving into SPMS. So yay.

                  I have never really used any support before, just was honestly in denial for 15 years, now im acceptingish, and with that Im losing my motivation. (or energy, MS Fatigue sucks)

                  I have 2 beautiful daughters a beautiful wife and a stepson anyone would be proud to call theirs. I am a mental health counselor by trade, and I am learning to work on and build stringed instruments. Anything to work on my coordination I am losing. I do not know what I am looking for in this place, however I hope I find it. I have never really felt comfortable talking about MY ms to anyone really. I can give an overview of my symptoms, my medications, treatment plans, and changes in my physical well being, but I have yet to feel like I can tell someone how I feel without thinking in the back of my mind that they doubt I really have it, or that Im making it sound worse so I get sympathy, or the most annoying of all, "oh yeah i know how that feels", or "Im tired too, I just make myself get up and do it!".

                  Maybe my issue is I have never really talked to anyone who may have a clue of what it is like. One of my bigger fears and causes not to discuss any of this is how I will feel discussing things that are difficult for me to deal with to people who are so much more involved than I am.

                  Now that I have read what i wrote my anxiety wants to delete it all and just say Hi! So that seems like too much work, so I shall stop here, and see if anyone can decipher this mess.
                  I hope you find what you're looking for here. I've found that it's a good place to talk. It seems that others "get it". My husband thinks he does, and, bless his heart, he tries. But sometimes he responds in ways that ate so far off my path that ... well.

                  Your path, it sounds like is similar to mine in some ways. My MS began in 2002, just shortly after yours, and I am also transitioning to SPMS.

                  I wasn't able to ever be in denial because my MS started with a bang and it was obvious, from the start, that something neurological was going on.

                  So, yeah; hi. Just hang out with us. Start threads when you feel like it; respond to others when it strikes you. Whatever. But please stay around and jump in.
                  ~ 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

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