Scrolling for Energy
As I grow another year older, I feel my sleepiness getting stronger. I look back on my younger years and wonder how I was able to take 5 college courses, work 2 part-time jobs, an internship, and party with my friends until 3 AM.
The hardest part of all of that was getting out of bed in the morning, but I did it – I pushed through the tired so I could make the most out of my college years. Five years and 2 kids later, I’m lucky if I can drink one glass of wine without falling asleep on the scene.
Finding sources of energy
When I am overtired and my stimulants have worn off, the best thing for me at that point is sleep but most times, I can’t just sleep because my brain is begging me to so I have to try to find sources of energy somewhere. If I sit or lie down, forget it – I’m out. But keeping my brain stimulated in some way is what I need in the absence of medication to help keep me awake.
I typically look to grab my phone so I can actively scroll through the comments of a controversial post on a mommy community Facebook page, edit photos for Instagram, play a few rounds of Candy Crush, or add things I don’t need to my Amazon cart. All of this will help me from crashing on the spot.
No one truly understands
However, I know I have offended people I’ve been out with by whipping out my phone to mindlessly scroll for energy. No matter how many times I explain narcolepsy to my family and friends, I don’t think anyone truly understands and I don’t expect them to.
It’s hard to see my sleepiness when I use 6 pounds of under-eye concealer to hide my puffy bags and dark circles, and my usual accessory is a Venti iced coffee from Starbucks. But when I am around those I am most comfortable, I usually get comments about being on my phone. I promise, my family and friends aren’t boring, it’s just my brain telling me to sleep when I am awake.
When my medication wears off
I take my medications twice a day (if I remember) and they last for 4 hours at a time. Unfortunately, the stimulants I am on don't give me a boost of energy so sometimes, I can be so tired, I can’t remember if I took my meds because I don’t feel anything. But it must do something because I am better focused, can multitask, and am more organized.
When my medication wears off and if I don’t do anything to try to activate the wake cycle in my brain, my mood changes entirely. I become incredibly irritable and emotional – similar to a 2.5-year old who refuses to nap but is clearly overtired.
I start to mindlessly pick at my fingers and bite my nails or play with my hair. At this stage of tired, I’ve hallucinated, dreamt while awake, or dozed off into space for a few seconds to minutes.
Being a mom with narcolepsy
I have been asked a few times how I do it – how I can work full time and be a mom of 2 young children while battling narcolepsy and the answer is, I just do it. I don’t have any other option and I really don’t know any other way.
Ever since I can remember, I have been tired and living in this sleepy haze. At this point, I am used to constantly looking for sources of energy, and sometimes, I have to be creative on my daily hunt to find it.
My kids give and take energy
One of my constant sources is my kids. They keep me on my feet because they are young and need my full attention. No matter how tired I am, I try to not let myself sit or lie down when I am with them because the sleepiness will attack fast if it thinks I am about to rest.
As much as my children keep me awake, they also drain me at the same time so sometimes I have to resort to my phone to activate my brain, and as bad as it looks, I like to think I can multitask.
Grateful for technology
Narcolepsy is hard. Having to find energy because my brain doesn’t naturally produce it, is hard. But, if I am going to have this sleepy disorder, I’d much rather have it in this era of constant technological advances where I can turn my brain on with the flick of my thumb on my cell phone.
Do you feel that others judge the severity of your narcolepsy based on how you look?