“The cause of narcolepsy isn’t well understood but may involve genetic factors and abnormal signaling in the brain.

If the brain loses hypocretin, histamine and other naturally occurring chemicals in the brain don’t work well enough, and states of wakefulness and sleep can happen at the wrong time. With low or no hypocretin, the separate states of wakefulness and sleep do not work properly, shifting often from one state to another at the wrong time.

Excessive daytime sleepiness (EDS) can be a daily obstacle. It can affect routine activities such as exercising or cooking. Some may suppress their feelings or skip activities to prevent an attack and avoid embarrassment.

In full honesty, until I started talking to Halle about the issues I had been having, I would have never in a million years gone to the doctor in hopes to discover narcolepsy, or any sleeping disorder for that matter. I just thought there was something I was doing wrong during the day, or in preparing for bed, that was causing my problems. At the time I was living in a sleeping porch {4 of us in one room}, so I was thinking that maybe I was just mentally having a hard time adjusting to sleeping in such a fashion and that was causing my constant tiredness. Well apparently not….hahahha. I also had sleep problems in the past, but they would come and go. I had taken some medication, that never worked, but the narcolepsy symptoms were much different from the prior problems I had!

✰ I mentioned earlier that I would have sudden emotional outbursts, which many times were really panic attacks, { but really i’m just dumb and didn’t realize that those were panic attack I was having until I got diagnosed with narcolepsy}. Other times, however, were just me becoming so angry and then thinking to myself, “wtf did I do that for why am I angry at all?” That was my least favorite character trait by far, I always felt so terrible, and then would get over the situation about a second later while everyone else was still upset … that often left everyone very confused. Thankfully that does not happen anymore!

✰ Hallucinations & Sleep Paralysis — these two symptoms were some I had in the years prior as well, mostly from the sleep complications that developed from my concussions, but they were N E V E R as bad or frequent as they started becoming in 2016/2017. It got to the point where I would have sleep paralysis every morning… it was terrible and it would cause me to be pressed for time almost daily. Now, both still occur, but definitely not as frequent and not as severe either.

✰ Something else I started to notice was my short term memory was practically nonexistent. It was so weird, I would sit there basically zoned out and crossed eyed trying to listen in a conversation or in class… literally miserable. I felt so bad because I thought it was super obvious when it would happen but it wasn’t intentional. Often I would zone out or nod off in class sort of like you do when in you’re in the car and sleeping but kind of awake enough to hear noise in the background. It was bad… 

✰ I also started to avoid going to / doing everything. I just knew in my mind I would not have a good time going out or committing to something if it was after about 7pm; or if it was long, I had to stand, I had to be active … I literally became lazy and boring. This aspect was especially bothering me because I felt I had no excuse for avoiding being social but I physically could hardly keep myself vertical most days.

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NOW →

Sadly still have not fully figured out what works best for me. I feel beyond accomplished on days where I don’t give in and take a nap when Ripley does … hahaha sounds so sad but it’s true. The worst part about it is that I am home, bored, and have m a j o r seasonal depression, so this past winter I gave into naps…a lot. Which ended up completely screwing me over because now my sleep schedule is beyond fucked up and it’s been impossible to fix. In January there was a series of two weeks where about every other night I wouldn’t be able to sleep at all, naturally causing me to crash hard during the next day. It was a nightmare. Now that the weather has gotten warmer, I switched up my medications a bit, and I found “The Power of When” things have s l o w w l l y y gotten a bit better. Definitely still a work in progress.

✰ One thing that has significantly improved is the understanding my family and friends have started to obtain in regards to how narcolepsy works. To be completely honest it used to {still sometimes does} bother me so much whenever people would complain about being tired but then not try to empathize or understand what I had to go through just to brush my teeth in the morning. Thankfully, everyone has started to get it and care more to know the truths about it, so that makes me really happy.

✰ Sooo in sum, my life still kind of is a struggle, especially when I have to add Ripley into the mix. I am constantly late {I apologize in advance to everyone}, i’m even more of a scatter brain than I was before, I start doing a task then tire out in the middle creating disaster {usually when i’m doing laundry…haha oops}, plus a ton of other little things that will make anyone crazy … especially myself. It has been hard trying not to get mad at myself for being like this knowing that I used to function fine, but I didn’t have these symptoms four years ago… so this is the new normal and it will all work out soon!!! Just happy to have people in my life that understand, make fun of me for it, but deal with me anyways (:

I’m going to post another one on the details of my day with lil ole rip and my new ∼ d o l p h i n ∼ schedule I have been trying to follow the past few days!!!!