Today I was reading an article that a very special person took the time out of her life for. She took the time to let strangers see what it is like for her everyday living with Narcolepsy. It was not something she had to do but something she wanted to do in an effort to increase awareness. Being PWN's, (persons with Narcolepsy ) we already know there is a stigma attached to the disease. Yes, it is officially classified as an auto-immunological disease as well as a neurological disorder. I digress. Anyhow, after getting my official diagnosis, I began hearing all the want to be doctors give their assessments and opinions of what I needed to do and I just brushed it off. Reading some of the comments that I read this evening though were just on a whole other level, especially coming from complete strangers, so I am going to clarify some things. Where should I begin? I think I will start with weight gain. Most PWN do not gain weight because they are too lazy to exercise. Also, i
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 yo
Until 2014, I have worked since high school. At times, I have held three jobs at once. I have worked hard. I have struggled through illness, with no clue as to why it was so hard to make it through the day. There were days I didn't think I would make it through the work day. There were times I didn't think I could make it to the bus stop, but I did. I pushed until I thought I couldn't push anymore. I stood when I felt there was no way possible I could keep from collapsing to the ground. Every single day was a struggle, but I did it. I am not lazy. I am not a slacker. I am by no means weak. I am a fighter. I fight every damn day, and no person should have to fight just to make it through a day. Now, everyday I have one more reason to be scared. Despite the fact that I have spent 30+ years working my a$$ off, putting myself through school, doing the best I could to maintain a career, the fact is that even if I am approved for my SSDI that I worked for, my government is work
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