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    #1

    Just saying.

    I really hate it when friends and family tell me:

    "How do you know it's your MS making you tired / sick / hurt? It could be anything... the 2pm hump, chronic fatigue syndrome (my aunt had that you know, you could have it too), not sleeping well, not eating enough, not thinking positively enough..."

    How about you STFU till you know what its like?

    Just ranting.

    -Amy
    Tags: None
    #2
    Rant on, sister, I hear you. I'm sorry they feel a need to question, justify, etc.

    Feel what you feel, experience it, and take care of yourself. Don't let them pigeonhole you into their experiences.

    Hope things get better, and feel free to rant any time. We're here, and we're with you.

    Kim

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      #3
      You could ask them back "how do you know it's not?"

      Or, "how do you know what it feels like to have MS?"

      Someone posted a link recently to have people read that don't know (or get it) what its like to have MS.

      At first my husband thought it would be good for me to go for walks...really!!?? Until he went to a neuro appt with me and asked the doc. He gets it now, most of the time.
      Prob MS 9-14-04; Dx PPMS 9-16-11; RRMS 12-15-11
      Ampyra 10mg 2xday
      Copaxone 1/20/12

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        #4
        They don't get it, no matter how well meaning they are or how much they try. My husband started saying something about me resting on the couch. He must have seen the look on my face; he didn't take a breath before he apologized.

        Is there an MS for dummies book? Maybe we should start handing them out.

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          #5
          MS for Dummies

          Yes there is a book "MS for Dummies", got one when I was first dx. Really good for non-medical thinking people and explains things well. But of course you have to get the detractors to read it!!!

          Min

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            #6
            Last Christmas my brother saw me hobbling up my mother's garage stairs to get in her back porch. My knees could hardly bend. When I got to the top he said to me, "I'm also starting to have trouble with my knees and getting up stairs. I'm just like you."

            When I went into the house, my other brother's drama queen, hypochondriac, always-looking-for attention girlfriend said, "Ohhhhhh...I left my back brace in the car........". Funny, she just spent this past week moving her friend - furniture and all.

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              #7
              Too many times I've been told, you're just under a lot of stress. Well, thanks for adding to it.

              Last summer, my parents invited me to their new house (new for them, actually over 100 years old) in upstate NY for a week, and put me up in the attic room of this un-airconditioned house during a heat wave. When I mentionned that I was really uncomfortable in the heat, actually having trouble climbing the stairs to that room, my mom said to me, "Abby, everybody's uncomfortable in this heat." Interesting how nobody else had started limping. If I hadn't also been visiting with my 94 year-old grandma, I would have left for a motel.

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                #8
                Yeah, Amy

                Don't forget how everyone's an expert on your condition, now. Ya know, because they know 'of' someone who has MS. Not personally, just know of someone.

                I'm having the Mother of All First Flares and my husband wanted to know why I was walking so slow through a diner. He also told me to hurry up in the grocery store.
                Dx: 2/3/12. 6-8 lesions right medulla/cervical spine. GLATIRAMER ACETATE 40 mg 1/19, medical marijuana 1/18. Modafinil 7/18, Women's multivitamin, Caltrate + D3, Iron, Vitamin C, Super B Complex, Probiotics, Magnesium, Biotin.

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                  #9
                  Oh wow... I get that a lot too... I get so sad because I feel my own family doesn't get it!, I something even think that they think I'm exaggerating..

                  Comment

                    #10
                    I got some flack from a woman I work with and she said, "You know stress doesn't cause MS, so just get over it!" I was like are you kidding me???? I am the type of person that keeps to myself...doesn't bother anyone, minds my own business and this lady is going to tell me something that doesn't make any sense. I let her have it. I told her that she needs to research the disease before she makes ignorant comments like that. I told her that I know stress doesn't cause MS it exacerbates symptoms and until she educates herself on the disease she ought to keep her mouth quiet. She has no idea what I have to go through silently on a daily basis. She ended up apologizing to me. Just realize that some people are ignorant when it comes to understanding what MS really is, all we can do is try in small ways to educate them. Ultimately, people that don't have MS, don't truly get it.

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