Thursday, January 26, 2017

What medical condition do you have that you thought was absolutely normal?

Growing up, I never understood why people who were close to me thought I was lazy.

From around ages 9 to 13, my parents seemed to attribute my sleepiness to a) me not having a good sleep schedule and b) puberty.

In high school, I felt annoyed and hurt when my friends teased me every time I told them I was too tired to hang out. I was super involved in extra-curriculars and I took all honors/AP/college classes. Of course I was exhausted all the time. Everyone was, right? …Right?

Yeah, apparently not.

To paraphrase a comparison I found somewhere online: having narcolepsy is like having a cell phone that dies completely and takes 10 hours on the charger just to get up to 45%. From there, it can't hold its charge and it dies again in a few hours.

Another thing people with narcolepsy say often: we feel the same way after sleeping for 8 hours that some people feel after having *not* slept for 24–48 hours straight.

Some random facts about my experience with narcolepsy:

  • Sleep doesn't work for me. It isn't restful.
  • After my Tuesday/Thursday 8:15–9:40 AM class, I go home and sleep for 6–8 hours. I feel more tired when I wake up than I did before I slept.
  • According to my sleep study, it only takes me around three and a half minutes to fall asleep at any given time—even if I've already taken four previous naps that day.
  • Sometimes it physically hurts to be so tired.
  • I once decided to take a nap at noon on a Saturday. When I woke up, it was 2 PM… Sunday. I slept nonstop through an entire day.
  • The Disney princess I'm obligated to relate most to is Sleeping Beauty which is awful because she sucks and is the worst.

Edit 11/30: Thank you so much for the kind words & concern! I have been officially diagnosed with narcolepsy for some months now, so I'm certain there's not another underlying issue at play (I do also have depression & PTSD but have been seeing a psychologist for those things since this spring). I have a fabulous, well-versed sleep doctor who I like very much. It took about six weeks, but I have finally adjusted to my medication and have been feeling good since. I don't take the pill every day, but when I do take it, I can definitely feel it helping! I'm not sure where I go from here; I think it's pretty much meds for the rest of my life. They're unfortunately very expensive, but I don't really have another way of coping.



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