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Surrounded by people yet all alone

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    #1

    Surrounded by people yet all alone

    I've run the gambit only to have all the DMT's fail. Tysabri discontinued due to turning JCV+ at this point my doc and I decided, I am done and I'm okay with that. Trying to prepare for rebound effect and hoping my MS will be kind to my body.

    I am lucky to have a great husband, daughter and sisters living nearby. I should be grateful, I know. When I talk to my sisters about symptoms or pain, they pity me or worse, tell me they know exactly how I feel because they stubbed a toe or some such thing. My daughter (29 yrs) looks like a deer caught in the headlights, she has probably researched this disease and it's outcomes as much as I have, so every twitch I do becomes worse case scenario and it scares her. My husband it probably the worst.

    I recently had a viral infection and a flare, double whammy. When I got into a nightgown at 10 am, something that has never happened, my husband fainted and took out a wall of pictures, seriously. When I flare he has panic attacks. It has gotten to the point where I'm not telling anyone anything. If something is visible I minimize the pain, my own worries, fear and distress.

    I walking a tightrope without a safety net and it really sucks. Thanks for the vent.

    Peace,
    Anna
    Tags: None
    #2
    Thanks for posting, Anna. Do what you need to do, regarding talking with your husband about flares. But, if he is not emotionally able to support you with that, please find someone who is.

    Either a friend who could do that for you. Or, attend a support group, even once, and make a new friend who can be an in-person or email sounding board. Or, even find someone here, at MSWorld. One specific person, who might be willing to be an email friend. You can list your email address in your profile, if you choose to. Even temporarily, just so you can access each other.

    But, you need someone to talk to if your husband's panic attacks make him not the ideal MS support for you. And your sisters and your daughter maybe just don't know how to "be" that person either.

    I've found that other people who deal with chronic illness, even if it's not MS -- they "get it". Diabetes, Parkinson's, asthma, arthritis, Crohn's, etc. If you have a friend or a colleague with one of those, maybe they could be a support to you.
    ~ 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

      #3
      Holy cow hobbit! I have had almost the exact run as you! went through all of the DMDs, Tysabri I am having to stop due to being JCV+ with a titer of 3.5. I too am hoping my rebound effect will not be too bad. I will be your email friend if you would like, my email is listed in my profile, since we have so much in common. Write your name and MS world in the subject line so I will see it. Oh yeah, I am also battling bronchitis right now so I am starting to pseudo-flare too.

      Take care
      Know that you are not alone
      Lisa
      Disabled RN with MS for 14 years
      SPMS EDSS 7.5 Wheelchair (but a racing one)
      Tysabri

      Comment

        #4
        Hello Anna

        When I got into a nightgown at 10 am, something that has never happened, my husband fainted and took out a wall of pictures, seriously. When I flare he has panic attacks.
        Aw, bless his heart. You have a husband who truly cares

        Have you and your husband considered counseling with a therapist who deals in chronic illnesses? This would give both of you coping skills that will hopefully decrease panic attacks and fears and let you work together during those uncertain times.

        Blessing to you and your husband
        Diagnosed 1984
        “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

        Comment

          #5
          Every time I hear a story like yours it breaks my heart. I'm stubborn and I want to continue on Tysabri in spite of the risk. I still believe that the risk of the rebound effect is much greater that the risk of PML, even though PML is very terrifying.

          But you have made your decision. I wish you the best and hope that that you will escape the rebounds, too.

          Comment

            #6
            Anecdotal, but I was told they give you a precautionary/ preventive great big dose of steroids when you have to stop Tysabri. That's supposed to limit the rebound.

            I think you're right, Palmtree, PML is terrifying, but rare. The rebound effect is pretty alarming, and apparently "to be expected".
            That was what mainly put me off the stuff when it was urged upon me. "What, so I risk PML, then if/ when I have to stop taking it, I could be worse?"
            They're just buying time. Then, as I say INADB, I'd keep taking it; buy some more time.

            (I'm not on Tysabri, so grain of salt etc.)

            Comment

              #7
              He's a good man

              My husband loves me to pieces, he's just a lousy support person. I have no clue on how to find a therapist that covers chronic illness and I'm not sure I could convince him to go to one. My husband is 6'4 and 240 lbs. when he falls the house shakes. I don't want to scare him, my daughter or anyone else any more than I have.

              I react badly to steroids and with my immune system already in the gutter was Doctor was loath to prescribe them unless absolutely necessary. I can handle what MS throws at me more than I could handle PML.

              So.....that said, I may be on this board more often to vent, cry, scream, shake my fist in the air as I wander through the next several rocky months ahead. It is a comfort to have someplace where I know I'm not alone with people that "get" the pain and frustration of a failing body.

              Peace,
              Anna

              Comment

                #8
                Originally posted by hobbit View Post
                ...

                So.....that said, I may be on this board more often to vent, cry, scream, shake my fist in the air as I wander through the next several rocky months ahead. It is a comfort to have someplace where I know I'm not alone with people that "get" the pain and frustration of a failing body.

                Peace,
                Anna
                That's what we're here for. Glad you will keep coming back.
                ~ 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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