My Narcolepsy Is Not an Excuse, It Is My Reality
Something I would hear quite often growing up is that I was making things up, or I was just lazy and didn’t want to do anything. I still, to this day, hear it far too often.
I get why people would think that before my diagnosis. Because no one knew how tired I really was and how much narcolepsy affects me daily. Even I did not know that being that tired wasn’t normal.
I still hear inaccurate comments
I am a little more surprised that people are still saying these things, along with other things, such as telling me I am using my narcolepsy to get out of doing things and that I can’t just lie in bed because I want to.
Pretty recently, I have had some family members tell me those 2 things. They know I have been diagnosed with narcolepsy, but they do not fully understand how it affects me daily.
I did not choose to have narcolepsy
Narcolepsy is not something you can “fake.” I do not get to choose when my symptoms are going to be worse on certain days. I would much rather not be lying in bed feeling exhausted, but there is only so much I can do to try and distract my sleepiness. Sometimes distraction isn’t enough.
I would much rather have a full-time job, make more money, have more of a social life, but I cannot control when my sleepiness decides to kick in. People act like this is something that I want to do when I would rather do almost anything else in reality.
It took a lot of time for me to fully process that it is okay to not have a full-time job like others my age. It is okay to not be like other people my age in general because, well, I am not like others; I am living with narcolepsy.
No one knows my sleepiness better than me
Some people in my life think that I use narcolepsy as an excuse to get out of things when in reality, I am trying to help others understand more about narcolepsy. I have to put myself first, and that is okay to do because if I don’t, who will?
No one but me knows how tired or sleepy I am and how it affects me daily. I would never stay in bed to get out of something. I would do anything to not have this sleepiness and be able to do anything I want to do, whenever I want to do it.
Putting myself first
I have found out that if I live my life trying to please others, I would be trying for the rest of my life. I have been focusing on myself and my health more recently, and it is one of the best decisions I have made.
Putting myself first means I don’t have to do certain things just because others think it is what I should do. I take naps when my body needs them, and I do not let others question them or try and put me down because I need a nap every day.
Listening to my body
Some things I have found that have helped me and my sleepiness are trying to stay busy and distract my sleepiness. When my sleepiness is too strong, and distraction doesn’t work, I let my body have a short nap because fighting my sleepiness will only make me more sleepy. I also try to get most of my important tasks done in the morning before my sleepiness kicks in.
Every person with narcolepsy and their sleepiness are different. This is what I have found helpful, but it may not always be helpful for others. If you have any things that help you and your sleepiness, feel free to leave a comment below!
Where are you in your narcolepsy diagnosis journey?