Is there a way to definitively figure out WHY we have narcolepsy? Like how we got it? I’m genuinely curious if there’s a way to find out. I don’t know why it matters so much to me, but it does.
I think I’ve always sort of leaned towards it having been from receiving the H1N1 flu vaccine in 2009, when I was pregnant with L. He was born in March of 2010, and by September I had changed jobs and was only working 4 days a week.
I remember texting my best friend one day from work and telling her that I was unimaginably exhausted. I remember saying that I honestly thought maybe I should go home because I truly felt THAT BAD. Looking back, I remember being startled at how exhausted I was. It wasn’t like a grumpy, angry kind of exhausted – it was more like a vision-sort-of-fading around the edges, body numb and fuzzy/warm, unable to focus on anything kind of exhaustion.
I have one other prior memory that stands out. At the place I worked when I was pregnant with L, I was an attendee in a large conference room meeting. The VP of Human Resources (from corporate headquarters) was speaking to our HR team of 50-or-so employees, and I realized that I was REALLY struggling to stay awake. I started pinching the skin on my thighs as hard as I could, hoping that the sensation would keep me awake. I did the same thing with the skin between my thumb and forefinger. I would take a drink of my Mountain Dew every few seconds just because the movement, ANY movement, kept the sleep at bay for another moment or two. Just as I was about to do the unthinkable – stand up and excuse myself from the meeting – the meeting finally concluded. I was elated it was over but horrified and embarrassed that I had been struggling to stay awake in the first place. Like seriously, WHAT was wrong with me?
Ha! Little did I know, right?!
What I can’t tell you for sure, though, is whether that meeting took place before or after I was pregnant with L. I worked at that company for nine years – and for only two months after my maternity leave ended. So it’s possible that it occurred when I was pregnant or after I returned from leave, but it seems more likely that it was sometime before.
But everything else leading up to my diagnosis was definitely after.
And yet – when I was with my best friend from high school and college this weekend, I asked her if I REALLY slept an unusual amount back then. She had no hesitation in telling me that I absolutely did. I didn’t do anything to lead people to think I was sick – I just slept A LOT. It was more like my personal little quirkiness – I liked to nap. If something was going on between the hours of noon and 4 pm, it pretty much wasn’t going to include me. Because I was napping.
YOU GUYS. I have to tell you …. I started this post a week and 1/2 ago. Today I logged back in and was re-reading the draft, and as I read the part about the HR meeting, I suddenly remembered ANOTHER time… ten years EARLIER, when I was pregnant with E… when I was fighting a bunch of sleep attacks.
I CANNOT BELIEVE THAT IT TOOK ME NINETEEN YEARS TO CONNECT THE DOTS.
I completely and totally forgot, UNTIL JUST NOW, another blatantly obvious example of a sleep attack. I was in my last semester of college and interning for an adoption agency, and we were doing a home study at a potential adoptive family’s home. I remember sitting in the family’s living room, and realizing with horror that I was falling asleep. The adoptive mom was concerned for me and asked me if I wanted some juice.
I remember going into the bathroom and splashing water on my face, AND DOING JUMPING JACKS. Jumping jacks!! I remember being horrified at how I was acting – I was so excited to be there, interviewing a family, hearing their stories and their dreams for their family-to-be. I was newly pregnant with my first baby, and had no idea what pregnancy was like. I was reading What To Expect When You’re Expecting and it said being tired was normal… wow.
I feel like this entire post is now a moot point. Except now I have to post it! I literally just realized TODAY that I definitively struggled with narcolepsy all of my adult life.
If it wasn’t for this blog, and me writing to you, I don’t know if I would have ever have made the connection. I don’t even know what it was that caused that memory to pop up, except that I was trying to explain what I felt like in the HR meeting when I was falling asleep…
So thank you for being here to experience that with me. It has always bugged me, trying to figure out how or why me? How or why did I have narcolepsy? Now I can confidently, and with absolute certainty, set that down. It wasn’t CAUSED by something… it is just who I am. What a nice thing to be at peace with.