Growing up, I never thought twice about my sleepiness and I didn't question it either. After I was diagnosed with narcolepsy, I would constantly think about how my brain was wired compared to others without narcolepsy. I thought everyone was just, tired.
I often receive an apology when someone tells me how tired they are as if I am offended. In actuality, I feel bad when people who don't have narcolepsy tell me they are tired. They most likely aren't used to feeling that level of tired, so it may be harder for them to function.
Putting my diagnosis in perspective
When I was diagnosed with narcolepsy, my neurologist asked me if I ever pulled an all-nighter for school. Followed by saying that narcolepsy is the feeling of pulling an all-nighter 3 days straight to an average person without narcolepsy. This really put my diagnosis into perspective.
I have insisted on my peers to stop apologizing but they feel their tired doesn't do mine justice. I am used to being tired all of the time and I really don't know any different than fatigued. When they apologize for commenting that they are tired, I take no offense, it is rather a reminder that I have narcolepsy.
Type 2 narcolepsy and excessive daytime sleepiness
I usually forget about my narcolepsy diagnosis. I suffer from type 2 narcolepsy, which means I struggle heavily with excessive daytime sleepiness. Whereas those that have type 1 narcolepsy may struggle with cataplexy, sudden muscle weakness or loss brought on by strong emotions.
I believe if I had cataplexy, narcolepsy would be more apparent to me, as I would try to avoid a physical sleep attack. If no one knew I had narcolepsy, it would probably be hard for them to assume I do. I like to think I look pretty average - who doesn't have bags under their eyes after their 20s?! Add two kids short of 2 years apart and I'm lucky I can still cover these bags with makeup.
Narcolepsy has been with me my whole life
I really have been tired my whole life, and it tends to get me down when I think of it that way. The reality of it is that narcolepsy has been and will always be a part of my life, whether I am consciously thinking about it or not. Narcolepsy was there well before I was diagnosed.
I remember struggling to pass exams in school because of my constant brain fog and mid-day sleep attacks. I also remember falling asleep at parties when there were many people around. After I was diagnosed, it didn't make anything much better other than something I can blame for my tired.
Learning to accept myself
Although narcolepsy may not be on my mind every minute of the day, it has interfered with some decisions I've had to make. I couldn't continue to breastfeed my children, something I was passionate about doing before giving birth, because I would fall fast asleep during each feeding.
Narcolepsy has interfered with plans I've had to cancel because I know I needed to sleep instead. It has affected my marriage, being a mom, and working full time. But I have learned to cope with it by accepting narcolepsy as being a part of who I am.
How important is following a daily routine for managing your narcolepsy?
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