Today I've been thinking about what to write about here, and I have a few things I'd like to share. I used to try to read, and research everything possible regarding Narcolepsy. New treatments, New discoveries and anything new about Narcolepsy was on mind more than anything.
This blog started out as a way to share what I learned along the way. So, today I would like to share some things that I didn't really understand before. They didn't require research, they required time; time to grow, and learn more about this Narcolepsy, just by living with it.
First what I know is this; even though I have been diagnosed for about 11 years, I still sometimes get to a place where I feel like people that are close to me disregard my illness or act like it is not a big deal. It seems as if they expect things from me that are things that I may not be able to do.
Instead of being straight forward and reminding them in a direct and honest way that I can't do whatever it is at that time that they ask of me, I take the selfish route and begin my passive aggressive routine. I except the task and complain to myself about how mad I am that they would even ask me do whatever it is in the first place. Then comes the pity "celebration" about how no one cares about me, they don't believe my illness is real, they don't appreciate anything I do...and so on. They even will ask me to drive somewhere when I feel sleepy!! They don't care!! And then like magical clockwork depression show up to make it worse...Thanks depression!
Here's what know is true; I am the one in control of my actions. If I know that I am not able to do what is required at that time, it is my duty to tell them that. Yes, they know I have Narcolepsy, but unless I let them know how I feel, they will never know. If I just do what they ask of me, when I don't feel that I can, or if it is not safe for me to drive, I am the only one to blame if I do it anyway, without letting them know that I shouldn't do it.
So, in a nutshell...tell people how you feel. Do the best that you can, and if you can't do something, let them know that you can't. It is so very simple, yet sometimes we make everything so much more difficult! Truth is, that there may be people the really don't care about how you feel. But in my situation, most of the time, those type of thoughts are created only by me, and my actions.
I do have a lot of people that care greatly about me. There are some that don't and yes, it hurts me to the core at times. I am still so grateful for those that do care. I am blessed. Sometimes we need to check ourselves! We need to give people more information and more chances. We really have absolutely nothing to lose.
