Misunderstood….to say the least.

I have learned to accept that most people will never understand what it’s like to live with Narcolepsy. Throughout the years I have struggled to understand myself and what I was dealing with. I had no clue. Never heard of Narcolepsy the very thing that controls every aspect of my life.

Understanding narcolepsy after diagnosis

It took me until I was 22 years old to finally get a diagnosis. I got put on medication that I hate to have to rely on, almost lost my long term relationship over the stupid pills we have to take. But I also almost lost him from sleeping all day long on him and our children. So sometimes it feels like we just can’t win. Even with medicine I feel heavy and drained, I’m able to fight through and be a good worker but I know others don’t know what it takes to be that. They don’t see me sneak a nap in between those busy hours of the day, they don’t feel the strength it takes to make it through a day, they’re not there after work to see my afternoon nap when really I would love to just visit my children. They don’t see the horrible twitching and weakness that comes with those naps.

Guilt and stigma

My older sister makes me feel bad that I can’t keep up with her energy, her ideas to randomly take the kids somewhere after work . That is something I need to plan for. She doesn’t understand that sometimes I don’t text because I’m so busy just trying to stay awake or so much to catch up on because I couldn’t stay awake …. She doesn’t understand that I have to leave early because I work early. She doesn’t understand that she lost the sister she knew when I was 9 . But what I don’t understand is she watched me loose that energy with her own eyes. She watched me every summer curled up sleeping all day , sleeping during vacations anywhere I could. She laughs about all the pictures she has of me sleeping everywhere….but somehow she thinks that I can control it maybe? Or she makes statements about how she needs naps too but sure we all do sometimes, but there is a difference. She just doesn’t understand but I’ve learn to accept that .