One of the most difficult side effects of living with narcolepsy is the inability to stay up late. People don’t wake up early to party, they stay up late.
So while I’m lying in bed, listening to everyone sit around the campfire playing games, it leaves me feeling very lonely. Not to mention how much harder it is to stay asleep when you hear your family and friends laughing without you.
I couldn't stay up even if I tried
Even if I tried to force myself to stay awake and sit around the campfire with them, I might as well just be asleep. My limbs are heavy, it’s hard to sit up straight, my eyes are glazed over (if they are even open) and I don’t have the mental capacity to carry on any of their conversations.
They ought to get a cut-out that looks like me and have it sitting with them instead. At least that would keep its eyes open.
No drinks, please
Being an adult, most late-night gatherings involve alcohol. When living with narcolepsy, is it not a good idea to drink alcohol as it will disturb my nighttime sleep, (which is already pretty bad). On top of that, there is no telling how the alcohol affects my nighttime medicine.
Most sleeping medications have warnings printed on the side of the bottle that you cannot have alcohol with this product. But how do you turn down a toast to a 50th birthday? How do you fit in with a new group of friends when you always have to be the DD? It can really get you feeling like a child sitting at the adult table during Thanksgiving.
Struggling with self-imposed pressure
It can be frustrating living with a social family. Ones that love to drink on the weekends and stay up until 3 a.m. having a great time. I am thankful they never pressure me to drink. However, I would be lying if I said I didn't struggle with the unspoken pressure I put on myself for not partaking with them. My internal argument begins.
"I can't drink. Having alcohol means I can't take my Xyrem, which means no sleeping for me. But I am so tired of being the only sober person here. I feel so left out. No, I shouldn't drink. Besides, even if I decide to drink, there’s a big chance I won’t be able to stay awake past 10 p.m. anyway, so it would be a waste."
Instead, I crawl into bed, take my Xyrem, and fall into a deep, unconscious slumber. When everyone awakens the next morning, I get to hear about all of the hilarious and fun things that happened while I was sleeping.
“I’m surprised we didn’t wake you up! We were standing right next to you laughing and shushing each other!”
FOMO sets in
I miss out on everything. It’s so depressing. For the rest of the day, they’ll be joking and referencing things I have no idea about. They all had a great time and tell me of the fun stories and “wish you could have been there” cliches. But no, I had to be asleep because I have a chronic disorder that doesn't allow me to stay awake.
Living with a night-shift police officer doesn’t make our social gatherings any easier. He wakes up with the moon, but I wake up with the sun. So when our friends get ready to hit the town, I’m getting ready for bed. He leaves to hang out with friends, meanwhile, I'm lying in bed wondering how much fun they are having without me.
On nights I try to push myself to stay awake for a little while, inevitably I will start nodding off. How do I explain to people who don’t know about narcolepsy that I can't control if I fall asleep mid-conversation?
It's okay to cry
There was one night a few months back (before I was on Xyrem), that I couldn’t sleep because my family was being so loud. I came out and snapped at them. They were shocked at my outburst and said, “Don’t come out here if you’re gonna be grumpy." That was all it took.
I melted into tears and explained how lonely it is to live this way. How many nights I've laid inside the camper while listening to them laugh and talk around the crackling fire pit. How many times I've laid in bed crying silently as I fall asleep because I wish I could just stay awake.
I am thankful for that night. It reminded me that no matter how alone I might feel, I am always surrounded by people who love and support me.
You are not alone
If you are reading this right now and feeling lonely, please remember that you are not alone. No matter what your mind may be telling you, you deserve happiness. Surround yourself with people who support you and who listen when you need to let it out.
Even during this isolating time that the whole world is going through, it does not mean you are alone. Even if you can't stay up late to share a drink with a friend, that does not mean you are broken or unworthy of being loved.
Do you ever like you're missing out because you can't stay up late? Share with us in the comments below.
How would you describe your relationship with your doctor?