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    sick of lying

    I look fine. I really do. But I'm now out the point if I try to anything requiring more than 4 hrs of being "on," I need a nap. I feel like I can barely stand or walk. I'm trying to work my schedule to something that means I'm not miserable full time.


    How do you explain to someone that it isn't just laziness?

    #2
    Hello Heliotrope,

    My extremely supportive daughter called me lazy earlier today because I didn't feel like walking around the grocery store. It hurt, but I let it go.

    Fast forward, to a few minutes ago, she said, "You aren't sick. You can help me cook". I am exhausted but I will help her cook.

    I know that my daughter loves me and is very supportive. She is truly my "ride or die" and always has my back. I'm not sure why I can't let it go. I just wonder if she is getting tired of my MS issues. I will find the right time to let her know how I feel.

    Ok. I just needed to say/write this down. I will now get up and shake it off. I need to keep a positive attitude or this MS will take my joy away. I can NOT let that happen.

    Thanks for listening. Have a wonderful evening!

    Comment


      #3
      Originally posted by heliotrope View Post
      How do you explain to someone that it isn't just laziness?
      I don't! No excuses, no explanations... it's just too exhausting. What I can do, I do and what I can't, I don't do. I don't care if I "don't look sick", in fact I'm glad I don't.
      Jrn
      RRMS 2005, Copaxone since 2007
      "I hope to be the person my dog thinks I am."

      Comment


        #4
        Hi heliotrope~ I don't think anyone who is able bodied can truly understand how we can have such disabling fatigue. It is so hard to explain to them, but my suggestion is to arm yourself with knowledge about how fatigue is one is the 3 most disabling sx of MS.

        MedHelp says:
        "Fatigue is one of the three most disabling symptoms of MS and is the one most like to lead to early departure from the workplace. 80% to 90% of people with MS complain of severe fatigue at some point. For about 60% it is a constant companion.

        Research with new MRI techniques is showing a correlation between "gray matter" (the thinking cells) injury, from very early on in the MS course, and both cognitive and fatigue problems. This "gray matter" fatigue further slows down the ability to accomplish anything and makes any action more difficult.

        Fatigue in MS is not easy to explain to ourselves or to others."

        You might want to print this out to pass along to others that can't understand-
        http://www.medhelp.org/tags/health_p...th-MS?hp_id=63

        Here's another informative article from the NMSS to print out and pass along-
        http://www.nationalmssociety.org/Res...t-Your-Fatigue

        And this brochure from NMSS-
        http://www.nationalmssociety.org/Nat...ok-So-Good.pdf

        MS fatigue is real. It's time to educate yourself and others about fatigue!! There are also medications out there to help, so you might want to talk with your Dr about this.

        Be strong, be armed with knowledge and be well
        1st sx '89 Dx '99 w/RRMS - SP since 2010
        Administrator Message Boards/Moderator

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          #5
          That is one thing I love about being able to commiserate here!

          People just don't understand and as someone suggested they probably do get tired of putting up with our limitations. So do we but unfortunately we don't have a choice but to slog along and take each day as it comes.

          My present strategy is to have enough money of my own that I can pay for whatever I need and hopefully that will reduce my family's annoyance of my deficits. I'll keep you posted with how that goes.
          He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
          Anonymous

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            #6
            Thanks everyone. The line "You look good" is fast becoming one of my least favorite. I swear the only thing people see is how worn your face is. For me, if you're only looking at that, I look better than I have in a while. I'm no longer acting as a caregiver (sadly). But they miss the fact that I'm using my arms to keep me upright. Kind of amazing.

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              #7
              i understand

              sometimes i just sit in the wheelchair so i don't have to deal and explain once again

              Comment


                #8
                But You Look Good

                Originally posted by Cat Mom View Post
                I don't! No excuses, no explanations... it's just too exhausting. What I can do, I do and what I can't, I don't do. I don't care if I "don't look sick", in fact I'm glad I don't.
                Jrn

                Cat Mom. This is an excellent attitude to minimize your frustration and stress level! I love it!

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