I Will Not Apologize

People get upset when I say that they can't possibly understand what it is like to live with a chronic illness unless you share that illness. They don't always understand that reading about and researching it isn't the same as living it. People don't understand that Narcolepsy and Cataplexy are a part of me and and they dictate, not me, a lot of my responses. I can see how it might be hard to understand that I am not brushing off or ignoring situations because I don't respond the way I should. I get that it is hard to comprehend that my seemingly lack if emotion is a necessity for me to make it through. It is as automatic to me as breathing and it us NOT going to change.
Narcolepsy is an awful illness but coupled with Cataplexy, it can be almost unbearable if you don't make some unnatural adjustments.
I can't show you what it feels like. If you don't have it, all I can do is try to give you a glimpse. Imagine if every time someone at work frustrated you, your body decided to go all limp as if your muscles had all turned to jello. Imagine if the simple natural emotions triggered by a random argument caused your body to go so weak you couldn't do anything but drop to the floor in total stillness until it passed. You can't understand what it feels like to have to surpress basic feelings just to be able to keep your body at a decent functioning level.
People get upset with me because they say I don't express my feelings when half the time I am too numb to know what I am feeling myself. So what do you do when you live your life every single day trying to avoid the awful thing that is Cataplexy? Since my triggers are stress, anxiety, frustration, anger, anything that upsets me, I do the only thing I can. I try to keep looking for the positive. I tell myself every chance I get, it could always be worse and I remind myself of all the reasons to be blessed. Quiet and peace is not a choice for me. It is a necessity. If I sit in my room quietly or I go lay down, I am not hiding. I am freaking surviving. I am keeping my sanity because Heaven knows, when you are laying there feeling like your body is rendered useless, sometimes it is all you can do not to lose it.
I won't apologize for being the way that I am because I did not ask for any of this and I think all in all I am doing a pretty good job if holding it together.  I won't apologize for being the way I am because if some of you had to walk a day or two in my shoes, you would probably break. I was told I need a backbone. I am telling some of you, don't get it twisted. This us my battle and God has blessed me with the strength and the discernment to know what I need to do to get through this life with my mental and physical health intact.

Comments

  1. Thank you for sharing this. You say what I couldn't. ViYanna Rosemarie

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  2. Thank you for sharing this. You say what I couldn't. ViYanna Rosemarie

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  3. Good information. Can you find a hobby(writing maybe? lol) that you can go to in those times of you feeling disconnected with certain situations? I know it is easier for most people to engage in something positive to help them later deal with the situation. Stay strong!!!

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