Wednesday, September 26, 2012

Do`s and Dont`s

I posted this on facebook a long time ago, but I am going to post it on here too. :)

-Don`t assume that I am feeling well, because I look good. I almost always look good, but feel terrible.
-Don`t tell me you know how I feel UNLESS you have a Chiari too. Yes, I know lots of diseases cause pain but everyones pain differs with each illness or disease.
-Don`t tell me I can`t do something, because that just makes me want to do it more. If I choose to do it and hurt later, then thats my problem.
-Don`t feel bad that you can not take the pain away. I was given this because God knew I could handle it. :)
-Don`t ask me how I feel unless you want the truth and a long story to go with it.
-Don`t assume that because I did a certain activity today that I can do it tomorrow.
-Don`t be upset if it takes me longer or I say something wrong. Chiari makes you think slower and gets your words jumbled up.
-Do know that I have learned everything possible about this disease to help myself and to help other Chiarians.
-Do offer to help me.
-Do realize that if I am having a bad Chiari day that I am not upset with you, that I am frustrated with the disease.
-Do PRAY and offer me lots of encouragement.
-Do hug me gently.
-Do understand when I have to cancel plans with you at the last minute that I never know how I am going to feel when I make the plans.
-Do understand that if I say I need to lie down or take medicine, it probably means I must do it now.
-Do understand that Chiari is very difficult to live with.

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