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    Hello fellow Supermen and Wonder Women

    Hello! My name is Shelley. I was diagnosed with relapsing/remitting m.s. in 2005. I have three grown children, two live with me and my husband and three stepsons. I am a letter carrier and have been unable to work since October of '17.

    I had an urinary tract infection that started a flare up that I have never recovered. I was walking nearly a half marathon daily while I was working, now I have been tested as less than sedentary by a physical therapist as part of my appeal for Social Security Disability. My neuro believes I've most likely progressed into secondary progressive m.s..

    I'm having a difficult time of it. I was used to being to mentally overcome my fatigue so I could work even if afterwords I was out of commission. Now I can't even work in my garden for an hour or so before I need to go indoors and quite often sleep for two or three hours. In my head I can still manage it but now no matter how mentally tough I may want to be the fatigue is soo much stronger than I am.

    I needed to be stubborn and tough to be a letter carrier for more than ten years. Sometimes now I find it difficult to accept that resting when my body tells me to and to not put expectations on myself daily to really do anything. Instead I'm trying to just do what ever small project I want to use my meager strength on that I will enjoy, just not what I feel I need to do for my family to feel worthy or whatever.

    I am trying hard to give myself a break. Recognize really how long I worked and how long I held out. As life often is with multiple sclerosis, I am fighting my self mentally almost as much as I am fighting the disease. I am hoping when I am approved for disability, I will be able to really accept my new reality and focus of fighting the disease and not my own self doubt and fears of wortiness.I am hoping that by reaching out to others and connecting with people who really have been where I am I can avoid becoming a recluse hopefully keep my chin up!


    ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

    #2
    Hi Shelley and welcome

    Thank you for sharing your story with us.

    Originally posted by villagegirl107;1512296[/QUOTE
    I'm having a difficult time of it. I was used to being to mentally overcome my fatigue so I could work even if afterwords I was out of commission.
    I can relate to this. I was able to work for 5 more years (after being diagnosed with PPMS) for the US Postal Service (processing and distribution center). I felt as if I could mentally control the physical demands, and for awhile I did. But gradually the motor fatigue became stronger than any effort I could muster to overcome it.

    I remember getting to the point of working 8 hours (even after getting a light duty position) and then being totally exhausted for the rest of the time. Eventually there was no option left but to retire on disability.

    Originally posted by villagegirl107;1512296[/QUOTE
    Sometimes now I find it difficult to accept that resting when my body tells me to and to not put expectations on myself daily to really do anything. Instead I'm trying to just do what ever small project I want to use my meager strength on that I will enjoy, just not what I feel I need to do for my family to feel worthy or whatever.
    Resting when needed is very important, as well as moving our bodies to the best of our ability - safely and without getting exhausted or hurting ourselves. I have found that 30 min at a time, up and active (with rollator), is pretty much my limit before I need a rest. Doing mild stretches really helps, and walking for 30 minutes (with my rollator) 5X a week (inside my apartment) has been beneficial too.

    Originally posted by villagegirl107;1512296[/QUOTE
    I am hoping when I am approved for disability, I will be able to really accept my new reality and focus of fighting the disease and not my own self doubt and fears of wortiness.I am hoping that by reaching out to others and connecting with people who really have been where I am I can avoid becoming a recluse hopefully keep my chin up!
    We're glad that you have reached out to us here at MSWorld, and hope you continue to post, letting us know how you are doing.

    If you have any questions, just ask and we'll be glad to help if we can.

    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
      Welcome, VillageGirl.

      I've had MS since 2002, just a few years longer than you have. I was able to work for the first six years, but, after losing three jobs in those six years, due to MS, I've been on disability since 2008. At one of my recent appointments, when I asked my MS Specialist if I'd progressed to SPMS, she said that I was probably "borderline". So, yeah -- I'm kind of in that stage too. She hasn't taken me off Copaxone yet, but I suspect that it's no longer helping. My disease progression has been more noticeable the last several years.

      Best wishes in your quest for disability benefits. I hope that they will approve you quickly.
      ~ 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
        Hi villagegirl and welcome!

        I was diagnosed on 2006, but first flare was 1993, if not 1979. I stopped work in 2014 and have struggled with the same thoughts. Work adds so much to our identity, so when you lose it, a piece is missing.

        I still tend to overdo it when good days, as I push on. Then wham, can't function. My neuro says I should do what you do, spread it out more evenly! But my mind says, keep going!

        I wish you good luck with your SSDI claim.
        Kathy
        DX 01/06, currently on Tysabri

        Comment


          #5
          Hi VillageGirl!

          Yes, you said it all well: The mental part of dealing with MS can sometimes be harder than living with the physical symptoms.

          Comment


            #6
            Originally posted by villagegirl107 View Post
            Hello! My name is Shelley. I was diagnosed with relapsing/remitting m.s. in 2005. I have three grown children, two live with me and my husband and three stepsons. I am a letter carrier and have been unable to work since October of '17.

            I had an urinary tract infection that started a flare up that I have never recovered. I was walking nearly a half marathon daily while I was working, now I have been tested as less than sedentary by a physical therapist as part of my appeal for Social Security Disability. My neuro believes I've most likely progressed into secondary progressive m.s..

            I'm having a difficult time of it. I was used to being to mentally overcome my fatigue so I could work even if afterwords I was out of commission. Now I can't even work in my garden for an hour or so before I need to go indoors and quite often sleep for two or three hours. In my head I can still manage it but now no matter how mentally tough I may want to be the fatigue is soo much stronger than I am.

            I needed to be stubborn and tough to be a letter carrier for more than ten years. Sometimes now I find it difficult to accept that resting when my body tells me to and to not put expectations on myself daily to really do anything. Instead I'm trying to just do what ever small project I want to use my meager strength on that I will enjoy, just not what I feel I need to do for my family to feel worthy or whatever.

            I am trying hard to give myself a break. Recognize really how long I worked and how long I held out. As life often is with multiple sclerosis, I am fighting my self mentally almost as much as I am fighting the disease. I am hoping when I am approved for disability, I will be able to really accept my new reality and focus of fighting the disease and not my own self doubt and fears of wortiness.I am hoping that by reaching out to others and connecting with people who really have been where I am I can avoid becoming a recluse hopefully keep my chin up!


            ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
            Hi and welcome to the forum I know that it's not easy but just each day can be a choir but I hope for the best for you and your family. Each obstacle course you have to juggle through just makes you that much stronger. I know that it's not easy but you may have to go back into the hospital for the infection because you can still have something else going on or you may need steroids for a few days to help.

            I wish you the best.
            Bobby

            Comment

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