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For those of you who remember me. An MS letter.

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    For those of you who remember me. An MS letter.

    As the tittle states this is for those members who remember my story. I saw one of those dear MS videos and decided to give it a try. Please no judgment and I really don't care if you think I have MS or not. I just wanted to share. It goes...

    Dear MS,
    I don't like you, you've stalked me since I was a child. Poking through the shadows to show yourself without me realizing it. Waiting for the perfect opportunity for your attack. You knew I was vulnerable, and you were cunning and patient. You waited for my life to be the best it could be to cut me down in my prime. You stole everything from me, my mind, my legs, and my family. But now I'm writing you to tell you I'm not going to let you do this to me anymore. You are in MY body and I'm taking it back. We may have to share this space but you're in my house and you must obey my rules. I'm taking my life back from you! No more will you torment my mind. I don't like you.
    Love, Crazyguy

    I want to share that writing this letter was a little emotional for me. But also liberating at the same time. I think a problem for me was that I was associating MS and myself as one entity. I don't like MS, and in turn I didn't like myself.

    In a way though separating myself from MS sort of explains the pain I felt when either my doctors couldn't find anything or were lying to me. You can decide which. But looking back I see myself as a rape victim or a victim of a crime trying to plead their case and noone believes them. No offense to anyone who actually has gone through that. And not that I'm saying that its the same experience. Thats just my subjective opinion of how I feel.

    Anyway I felt writing was the first step and now I feel like sharing. Keep fighting MS warriors!
    Crazyguy

    #2
    Originally posted by Crazyguy View Post
    As the tittle states this is for those members who remember my story. I saw one of those dear MS videos and decided to give it a try. Please no judgment and I really don't care if you think I have MS or not. I just wanted to share. It goes...

    Dear MS,
    I don't like you, you've stalked me since I was a child. Poking through the shadows to show yourself without me realizing it. Waiting for the perfect opportunity for your attack. You knew I was vulnerable, and you were cunning and patient. You waited for my life to be the best it could be to cut me down in my prime. You stole everything from me, my mind, my legs, and my family. But now I'm writing you to tell you I'm not going to let you do this to me anymore. You are in MY body and I'm taking it back. We may have to share this space but you're in my house and you must obey my rules. I'm taking my life back from you! No more will you torment my mind. I don't like you.
    Love, Crazyguy

    I want to share that writing this letter was a little emotional for me. But also liberating at the same time. I think a problem for me was that I was associating MS and myself as one entity. I don't like MS, and in turn I didn't like myself.

    In a way though separating myself from MS sort of explains the pain I felt when either my doctors couldn't find anything or were lying to me. You can decide which. But looking back I see myself as a rape victim or a victim of a crime trying to plead their case and noone believes them. No offense to anyone who actually has gone through that. And not that I'm saying that its the same experience. Thats just my subjective opinion of how I feel.

    Anyway I felt writing was the first step and now I feel like sharing. Keep fighting MS warriors!
    Crazyguy
    Thanks for sharing, Crazyguy. It's good that you're seeing yourself as a person, separate from MS. Sometimes that is difficult to do, especially when MS seems to take control of so much in our lives, for many of us.

    It's always good to pause frequently, and try to put things in perspective. I try to relish in my better moments, and the small successes I may achieve each day.

    Hope you continue to share with us Crazyguy.
    PPMS for 23 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

    Comment


      #3
      Thanks for sharing, CrazyGuy. As you continue on your journey, if you write more, please consider continuing to share it with us. It may be healing for you and might be for some of us too.
      ~ 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


        #4
        So I've written two letters these past few days a wanted to share those too. I've decided to name my problem Steve to even further distance myself from it. So here they go.

        Dear Steve,
        For far too long I have let you make me weak, timid, confused, angry, and emotional. This way of our relationship ends tonight. When you try to make me weak I will push back with strength. When you you try to make me timid I will become tenacious. If you try to make me confused I will take the time to understand. If you try to make me angry I will calm myself with love. And if you try to make me emotional then I can always seek the comfort of God and family. I may at one time been vulnerable, but I am resilient, I am strong, and I'm not going to let you treat me this way anymore.
        Sincerely Crazyguy
        PS eat crap and die!

        And after I got a little calmer I wrote this one.

        Dear Steve,
        You may think its funny to make me look stupid in front of friends and family. To make me act out in ways I never thought I would act. To make me dizzy, cause me pain and make me tired. But guess what! I see in myself now what I like in the world. I've always been drawn to what is unique. My choice in company, movies, music, basses, my wife and I think that's what draws people to me. I like the fact that I'm unique because that's what I like to see in the world. So in a way I guess I should say thank you for making me into what I like to see in the world. But that doesn't mean I have to like you. The more and more unique you make me will just make me love myself even more. So go ahead, try it! You have no power over me.
        Sincerely
        Crazyguy

        Comment


          #5
          Very clever strategy, Crazyguy.

          Fantastic way to release thoughts, feelings, emotions.

          Thank you for sharing with us.
          PPMS for 23 years (dx 1998)
          ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

          Comment


            #6
            Originally posted by Crazyguy View Post
            You have no power over me.

            Worth remembering!

            Comment


              #7
              So still in limbo, recent eeg was normal. All mri’s have been normal. Spinal tap was botched but found nothing.

              Id like some advice on what to do next. I’ve requested an mri on a 7t machine, but haven’t gotten a response. I don’t know if I should just quit looking for answers or push for more testing. If anyone has gone through something similar, what has worked for you for a better quality life.

              Comment


                #8
                Originally posted by Crazyguy View Post
                ... I saw one of those dear MS videos and decided to give it a try. Please no judgment and I really don't care if you think I have MS or not. I just wanted to share. It goes...

                ... Anyway I felt writing was the first step and now I feel like sharing. Keep fighting MS warriors!
                Crazyguy
                Thanks for writing and sharing. Yeah; MS can sometimes take over and it can feel like we "become" MS. Writing a letter to MS sort of separates you from your illness. It's a good strategy.

                ~ 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


                  #9
                  Originally posted by Crazyguy View Post
                  So still in limbo, recent eeg was normal. All mri’s have been normal. Spinal tap was botched but found nothing.

                  Id like some advice on what to do next. I’ve requested an mri on a 7t machine, but haven’t gotten a response. I don’t know if I should just quit looking for answers or push for more testing. If anyone has gone through something similar, what has worked for you for a better quality life.
                  You can try and push for a 7t, but they are hard to get approval on. As convinced as you are that you have MS, to date none of your testing supports it. Neuros won't diagnose it unless you meet the McDonald Criteria.

                  I would push for the 7t, but if unsuccessful, I would try and control everything which is in your control - eating healthy, exercise, rest, managing your anxiety and stress, continue seeing your psychiatrist and psychologist. If new symptoms occur, see your internist and go from there. Did you get your low vitamin D levels resolved?

                  Kathy
                  DX 01/06, currently on Tysabri

                  Comment


                    #10
                    Last vitamin d level I had was borderline. I take 4700 units a day. My testosterone is low, and no evidence as to why my legs are weak and fatigued. I do feel better when I eat good and exercise, but one or two bad days or even too good of days can set me off my routine. Sometimes when I feel better I get lazy and don’t feel like I need to be vigilant with my routine. It’s been a vicious cycle of hope and that hope getting destroyed.

                    Comment

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