“I Think I Have That Too…”

For the last few years, I have been diagnosed with Narcolepsy. No, I don’t have seizures, that’s epilepsy and no, I don’t just fall asleep like Rowan Atkinson in Rat Race (https://youtu.be/2MJX6XQUYA4) .

When I tell people that I have narcolepsy and how it makes me feel, I always get the “Oh, I think I have that too, I love naps” I always just laugh it off, but inside I’m rolling my eyes because I hate naps and narcolepsy is pretty rough to deal with. Growing up, I would fall asleep all the time but it was attributed to “she’s just a good baby” then “she’s a growing kid” and “she’s in hard classes and athletics, she’s just tired”. Until I got to college and I was still napping all the time but with no reasonable excuse.

Without getting too sciency and just explaining my personal experience, narcolepsy is a sleep disorder that basically makes me feel perpetually tired. It is still unknown what causes a person to have narcolepsy but it occurs with your brain going straight into the REM phase of sleep. For a normal person, they go through all four sleep phases in a cycle and once they get to REM, they’re only there for about 10 minutes at the beginning of sleep to about 45 minutes towards the end.

When I was trying to figure out why I was so tired, I went through a bunch of tests. I already knew I was anemic so no surprise there but that wasn’t the cause. The next step was to do an at home test to see if I have sleep apnea and finally, I did a test where I stayed a night and whole day after at a sleep clinic with wires stuck all over my head (not cute). It was with this test that they discovered that my body goes into REM sleep after 10-15 minutes and stays there almost all night.

What this means for me is that while I may get the proper hours of sleep and my body is in a deep sleep, my brain is wide awake so when I wake up, it isn’t fully rested. This quick transition into REM is also what causes me to have a lot of sleep paralysis, mostly at night, but sometimes when I’m wide awake. Being awake with a sleep paralysis episode coming on is scary and confusing because I see the real world but also weird dreams on top of it and sometimes I can’t distinguish the real from the dream and since my body is frozen, it’s hard to wake myself up. Thankfully, I have medication to keep me awake and this occurs less often when I’m awake but it is not a pleasant experience when it happens, especially when I would be in class or in the car.

Another symptom that I experience less often due to my medication is the feeling of my body suddenly weighing a million pounds. I get hit with the tired feeling and doing anything begins to physically hurt because my body just wants to lie down in a corner but I keep pushing it forward so I can go throughout my day. This part is so physically and mentally draining and when I complete anything in a day, it is such an accomplishment for myself even though it can be done without any effort for the average person.

This, tied with my anxiety, requires that I put in so much effort each day just to accomplish the bare minimum, and that I am able to do more than the minimum is huge for me even though it may look like nothing to someone else. It is also hard when I do give into the naps, even when I don’t want to, and I wake up more stressed than I was before because I feel as if I wasted so much good time in a day just sleeping and not accomplishing much. In high school and early college before I was diagnosed, this was the worst for me when I would come home and nap and wake up trying to finish my assignments and still go back to bed at a reasonable hour. Being a type-A person who likes to get a million things done and always be on the go, having a sleep disorder is pretty inconvenient.

Now, I feel less of the major symptoms due to medication to simply keep me awake but it is not solving the problem. It’s upsetting that the cause of narcolepsy is unknown and if it genetic, the fear that I could pass it on to my children. I’m also scared of the long term effects of my medication and the fact that I may have to be on it for the rest of my life and that I have to plan when I choose to have children, if I can, so I can come off of it and during that time have to suffer from all of the symptoms all over again.

The purpose of this post is to share my experience and clear up narcolepsy is an understandable way since it’s a word that gets thrown around but isn’t completely understood. Also to share that if you know anybody with a sleep disorder like narcolepsy, know that even if they don’t accomplish much one day, what they did accomplish required so much of their energy and focus and that’s something to be proud of. If you truly think you have a sleep disorder, please talk to your doctor and get tests done, while there may not be a cause or a cure, there is help!

xo, Lo

3 responses to ““I Think I Have That Too…”

  1. I heard my first “oh, I think I have that too” recently and it was so frustrating!! It made me a bit angrier than the more common “oh, so you fall asleep in random places?” question, because it invalidates your own personal struggles with narcolepsy. We do a lot to appear normal.

    Good luck with everything, I’m newly diagnosed too and it’s frustrating but has been so helpful to read about others’ experiences.

    Liked by 1 person

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