#narcolepsy type 2

[brushbuddybuggy]

Idk what it is about narcolepsy that pisses people off so bad. It’s not fun little naps. It’s not getting well rested. It’s not something I can control.

My brain shuts down. I will never be rested in my life. I have no control of when or why it happens. I promise it sucks way, way more for me than for you.

If someone sleeps for hours and hours a day, every single day, it’s not a good fucking sign their body is functioning well.

[ub-sessed]

So I did a sleep study recently and found out, at the age of 51, that I have either idiopathic hypersomnia or narcolepsy type 2.

Now this would have been super useful information when I was still in school and falling asleep in my classes, but given my current lifestyle, the main obstacle it presents is that whenever I get very stressed I fall asleep. And whenever I have to make a slightly difficult decision I get sleepy. Which doesn't help with the decision making.

Over the years I have learned to take jobs where I am on my feet (though my feet really do not like this anymore). I can turn off the sleep urge by dancing around for a few minutes. If I get my heart rate up, having other people around to interact with is enough for the sleepies to pass in a few minutes. But at home, where there are no people and there is a very comfy bed, all bets are off.

So my new long-term project is to learn how to keep from having to lie down every time I have to make a decision. (And no, forcing myself to stay awake is not an option. I learned this the hard way with years of well-meaning but uninformed advice from various therapists and counsellors. All my efforts at "sleep hygiene" just made everything worse.)

One method I use a lot is to let "someone else" make the decision. Create routines and write them out as reusable lists. Put numbers next to the items on a to-do list and roll dice. Flip a coin. Put the options on little pieces of paper and pull one out of a hat. Come up with pre-determined outfits for different scenarios.

Another technique is to take a break: when I feel the decision stress/sleepiness coming over me, I go into a different room and intentionally think about something else for a few minutes.

A less useful coping response is to just avoid stressful things. This invariably leads to them becoming more stressful and has not worked well. Also unsuccessful were the many medications I have been prescribed to keep me awake: they all gave me debilitating side effects.

In the meantime I am trying to work on accepting that I spend a lot of time in bed.

[nagichi-boop]

Can I just pretend I never went to the doctor about my sleep problems? I would prefer to go back to how I was, living in ignorance and assuming being tired all the time was just my fault for sleeping late. I don’t want to upturn my entire routine that I’ve held for years just for the chance that I’ll feel better. I’d rather keep feeling tired so that I can still live the way I want to. If I abided by the suggestions the doctor gave, I lose my nighttime peace hours, I don’t get an evening, I’ll have no more late mornings, and I can’t watch tv with my parents at night anymore.

If I convince myself I was just being silly and that there’s no way I have a sleep disorder, I don’t have to keep fighting, right? I don’t have to keep asking the doctor to test me or insist to them that something is wrong. I can just…give up.

I’m fine. I’m just lazy. And that’s okay. It has to be, because I hate the alternative. I don’t want to keep fighting a losing battle.

[disability-shout-outs]

Shout out to folks with Narcolepsy Type 2!

[sleepy-spoonie]

Today is World Narcolepsy Day 💤

I sometimes feel my journey with Narcolepsy can be boiled down to one sentence: I've always been sleepy.

For the majority of my adult life I've suffered from sleep attacks; moments of overwhelming sleepiness that lead me to nap without much of a warning. They can, and do, happen at any time, regardless of what I'm doing: watching TV, running errands, doing chores, talking, eating, driving. They can be annoying, inconvenient, and sometimes scary.

I was first tested for Narcolepsy in 2015, not long after I fell asleep whilst actively helping new roommates move in. My results were inconclusive, and I moved on. By early 2021, I couldn't get through a day without a lunch-break nap. I spent most of my weekends in bed, and was sleeping upwards of 11 hours at a time. When I was re-tested, just after I got married, I was diagnosed with Narcolepsy (without cataplexy). My sleep latency (time it takes to fall asleep) was 5 minutes.

I trialed several medications, some that didn't work, and some that gave me adverse reactions. My sleep attacks got worse. I had to ask for accommodations at work. By early 2022, I had to stop driving. Shortly after that, I was forced to quit my full-time job.

I am currently on a medication that works for me. It doesn't earn me better sleep, or stop me from needing to nap, but it undoubtedly makes me feel a little bit more human. I still struggle with sleep attacks, but instead of several times a day, I may experience them a few times a week. The attacks can sometimes still be overwhelming, but I've mostly learned what brings them on and can recognize the signs. And, I can drive again.

Narcolepsy is a learning curve. It affects everyone differently, and treatments vary. The medications and lifestyle changes that work for one person may not work for another. Advocate for yourself. Only you know what you need to live comfortably and safely with narcolepsy.

[brushbuddybuggy]

So before I got diagnosed with Narcolepsy, my family would say ‘you got hit with the tired stick’ whenever someone needed to nap.

I’ve evolved that to ‘I’ve been hit by the tired bus’

[edalynn-ink]

Doctors: Narcolepsy is a serious chronic illness, you’ll have it for your whole life and you’re going to need to learn how to manage it responsibly. I’m so sorry…

Me:

[nagichi-boop]

Wait wait wait, is it not normal to be kinda dreaming while you’re still awake? Cuz when I’m drifting off to sleep, sometimes I ‘daydream’ but it’s not a controlled daydream. My brain autopilots like it’s a dream, but I’m aware I’m still awake? Was this not daydreaming this whole time but like a half-asleep dream or smth? Or is this website just referring to the fact you dream as soon as you fall asleep? Plz help, I’m confused.

(pic source)