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trying to coop with all the feeling of really having this disease

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    trying to coop with all the feeling of really having this disease

    So since march I have been poked and drained only to feel like im getting no where. Having multiple autoimmune diseases is not fun at all. This has changed my whole life sad,depressed, lonely all the above yet I have a family of 5. Just feel like no one gets it.

    #2
    We get it.
    We don't like it any more than you do. Tired, sick, and tired of feeling sick. With a crew needing stuff done that only can be done by us. ugh. sigh. gimme a break
    We get it

    Hugz
    "Hope for the best and plan for the worst. That way, all your surprises will be pleasant."
    Verin Mathwin, The Wheel of Time by Robert Jordan

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      #3
      understand totally!

      Having these diseases and a family is so hard. I too have a family of 5 and days when getting out of bed seems impossible is the hardest. BUT, depending on their ages, you can enlist help. The youngest ones can get mommy (or daddy) drinks, books, blankets, pillows. Make them feel needed. They are probably scared also.

      Older ones can be talked to about it. Share information with them, so they know what to expect. Let them know you aren't dying, its not contagious, but you will have days where functioning is going to be hard. Show them how to unload the dishes, clear the tables, put dinner away. Take all their own dirty clothes to the laundry room. Take the garbage out. If they aren't used to it, they may balk at first, but be insistent and consistent. It works. Enlist your husband to get the kids motivated.

      Wish you the best.

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        #4
        Right there with you

        Dx in November, and for the most part, I think my family just forgets...and honestly, I would like to forget, too. So I'm trying to keep up with the demands of my life: career, wife, mother, daughter. With so many around me, I somehow feel terribly alone. Tired of complaining. Tired of being tired. Tired of not feel well. Tired of having to explain why I don't feel well to the same people over & over.

        It stinks. You are not alone!
        Cranial VIth Nerve Palsy (2008, 2014); Partial Myelitis (9/2015); RRMS Dx (11/18/2015); Plegridy (2/2016)

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          #5
          I'm there too. I'm in a sandwich situation where I have a teenager and aging parents, one of whom requires a great deal of care and support.

          I have a sibling who helps with my parents but there has been zero understanding of how MS can render one useless, or see energy depleted before I can get all the tasks deemed necessary completed. After numerous demoralizing encounters I am really at the point where I just don't want to deal with it anymore.
          I am the executive director of a small not for profit agency which is demanding. Something I thrived on really but now I'm just too tired to see the joy in it.

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