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Trying to figure this new normal out

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    Trying to figure this new normal out

    I’m here because I wanted to learn more about MS, about what I’ve been experiencing and just take those baby steps that I’ve been scared to do. I’m 35 yo and am a Therapist, LCSW, I specialize in trauma and attachment. I was recently diagnosed with RRMS this year after experiencing a lot of different symptoms. Last year my mom had 2 strokes (within a month) and that was the first time I ever really experienced holding so much stress in my body and started to feel just spasms through out my body and numbness and tingling. This year in the beginning of of Covid, my mom got stuck in Mexico because of it and that brought more stress and I started having an eye pain. From there that’s when everything started; my vision issues, fogginess, some forgetfulness and I went to see my PCP. After getting an MRI and it showing lots of white mass/space? I was connected to a neurologist and got a LP. I’ve had more MRIs, vision issues off/on, feeling dizzy/unbalanced and I’ve been contacted to the MS clinic here. I’m just trying to take this day by day and figure out what other type of support I need so that I can continue to better understand myself. Any suggestions for resources to learn about MS would be greatly appreciated. Thank you for reading this.

    #2
    Hello Amy and welcome

    Thank you for sharing your story with us.

    Taking baby steps, and taking things day by day through this process, is a good idea.

    Feel free to ask questions, and share how you are doing.

    I think you'll find our community to be supportive, as well as informative.

    Here are some helpful links with more info about MS.

    Home | National Multiple Sclerosis Society (nationalmssociety.org)

    About MS | MS Trust

    About MultipleSclerosis.net
    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 ItzAmy View Post
      I'm just trying to take this day by day and figure out what other type of support I need so that I can continue to better understand myself. Any suggestions for resources to learn about MS would be greatly appreciated.
      Hi ItzAmy,

      KoKo's suggestions regarding support are informative and will give a better sense of MS. Please visit the sites.

      Regarding understanding yourself better... You may or may not agree, only time will tell, but a chronic illness opens unexpected doors. You will more than likely gain a greater understanding and appreciation of the virtues.

      Applying patience, discipline, fortitude and of course humility will foster a pragmatic outlook... essential to any support our MSW members supply.

      And as KoKo said, share how you are doing.

      Comment


        #4
        Forgot to mention that MS Trust is based in the UK.

        I have found some very useful and interesting info on their website.
        PPMS for 26 years (dx 1998)
        ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

        Comment


          #5
          A warm welcome to MSWorld ItzAmy! It's wonderful you've found us. The advise given here is an example of what MSWorld is all about! We also are here to offer much needed emotional support as we all know how this journey unfolds for us. We all have good days and not-so-good days and we get it!

          I am appreciative of 502E79's response here:

          Applying patience, discipline, fortitude and of course humility will foster a pragmatic outlook... essential to any support our MSW members supply.
          And I would add, when possible, a sprinkle of humor and a positive attitude added to this mix!
          Please let us know how we can help in any way
          1st sx '89 Dx '99 w/RRMS - SP since 2010
          Administrator Message Boards/Moderator

          Comment


            #6
            My advice is to just stay positive (which is hard to do when you are in the middle of figuring out and taking in the news). Give yourself time to digest, have a pity party then stand up and refuse to fall down. I am also 36 and was diagnosed almost 3 years ago. The only thing different in my life today is I take a little pill everyday. Yes, when my stress is high i start to feel it in my body. And i have chronic fatigue. But i still work full time, raise a 4 year old and live life like i don't have it. We are in a time and age where we have a good outcome ahead.

            I've found to stay positive has helped and not let MS define me. But also listen to your body. If you need rest, rest. If you are stressing out find ways to cope. But then get up and fight it
            Dx March 2018; possible first episode: August 2011
            Tysabri May 2018-June 2019, Mayzent July 2019

            Comment


              #7
              Originally posted by ItzAmy View Post
              I'm 35 yo and am a Therapist, LCSW,

              ... that was the first time I ever really experienced holding so much stress

              ... just trying to take this day by day and figure out what other type of support I need so that I can continue to better understand myself. Any suggestions for resources to learn about MS would be greatly appreciated. Thank you for reading this.
              I just picked out a few things that you mentioned to respond to. I was also a social worker, in my previous life, so I wanted to say "hi"!. An LBSW; I worked in public health with a Maternal and Infant program. I also did Child Care Licensing for them, but didn't need my social work license for that. I decided to allow my license to lapse when I went on disability. I'd already not worked in the field for about 4-5 years; due to my health, it was easier to do other things.

              You are definitely on to something with your early awareness of stress and how it affects MS. I guess that my advice, related to stress is to learn to manage it. You likely have strategies for that already. I also learned to prevent it by not feeling guilty about saying "no" to others. You can't choose to say no to family/health things that life throws you, but while you are in that stressful space, you can choose how much, or how little, you are able to give to others.

              I also needed to learn to manage "eustress" (good stress). It was often triggered by anticipating happy events such as vacations, holidays, etc. Although I didn't "feel" any stress or even terribly over-busy, it must have been there. Many of my MS flares occurred right before those big events, sometimes requiring that I cancel them due to hospitalization. I learned that, a couple of weeks prior to a vacation, I needed to say "no" even to myself. I needed to massively scale back my regular activities, even if those only involved volunteer work, occasional social activities, etc and just spread out necessary tasks over longer time periods.

              Regarding what type of support you need. I don't know, regarding emotional support, etc. One thing that I wish I had done years before was explored complementary strategies to use in tandem with traditional medicine. Diet, exercise, stress management, other alternative health professionals, etc. I'm on a diet similar to The Wahls Protocol and I've made other lifestyle changes as well. My MS progression seems to have halted since I began these in 2018. I'm somewhat disappointed that I haven't experienced reversal of my symptoms, but maybe I will in the future. Meanwhile, stability is still worth a lot.

              ~ 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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