1 Alarm, 2 Alarms, 3 Alarms, 4. 5 Alarms, 6 Alarms, Please No More

The Psychological Torture of Waking Up

by The Winning Turtle

While I have decided to be raw and honest throughout this journey, some days it is hard. I forget that it isn’t just me being affected by the bullshit that accompanies Narcolepsy. I swear between body paralysis, my brain not wanting to wakeup and my alarm continuously reminding me to “WAKE THE FORK UP!” some days I feel like I can’t win this sleep deprived psychological warfare going on.

I know I am not the only one to deal with this. And sometimes talking about things is the best medicine.

Waking Up Feels Like Torture

I remember the days when I was younger, my bed was so fluffy and comfortable that I didn’t want to leave it. I wish it was still that simple. I miss having the choice to not want to get out of bed. And my body and mind has taken that away from me. I feel like every morning is like chinese water torture.

The worst of it all, isn’t necessarily the betrayal I feel from my mind to command my body to do what it is supposed to be doing without struggle. No. The worst of it, is the perception of those involved in your life. Their annoyance and frustration they feel towards you. When you snap at them, because you are struggling to maintain wakefulness after just having woke up and it is oh, I don’t know, the 10th time they’ve said “Okay, M. Time to get up. We have things to do”; they don’t realize the internal struggle you are going through.

It is the most exasperating thing and it is so hard to:

1- Not complain about it and;

2- Have people show some compassion and/or empathy


My brain yells at my body but it has a mind of its own….Irony?

My body usually feels like it weighs a ton when I first wake up. This feeling of heaviness is an everyday occurrence for me.  

Then begins the struggle of keeping my eyes open.

I usually fall asleep in under a couple of minutes. Here’s what happens in my head.

‘Ok Michelle WAKE UP!’ My eyes shoot open.

Then they start to drift closed once more. ‘No!! Come on, come on. We have things to do today.’ Eyes open.

Once all of that goes on for sometimes, up to an hour or more on bad mornings. I will start to have a conversation with someone or vice versa and I will fall asleep again. Sometimes, continuing a thought I had before falling asleep. Only to finally open my eyes and realize they aren’t there. Or forgetting completely the conversation that transpired.

Here’s the worst part for me. I also have PCOS. As I have written about briefly in another post. This causes me to have excruciating pain, very much like labor pains, throughout the month. Even if it is not premenstrual symptoms or my actual moon-cycle (menstrual cycle, moon sounds nicer and more mystical). Example, there was a morning a couple of weeks ago, I ended up in fetal position when I finally was able to make my body respond. Then I fell asleep. I still don’t know if I fell asleep because of my narcolepsy or because my body couldn’t deal with the pain. The downside was, I had things I needed to get done. I tried with everything I possessed to try and get up and start my day. Then, I tried with everything I had not to cry and start wallowing because I didn’t know what to do.

Disappointing people is the worst part of this so far.  I am independant to a fault ( Some call it being a control freak…Po-tay-toe/ Po-tah-toe I say!). How do you tell someone you physically cannot wake up properly when you’re having full conversations with someone?

It then becomes perceived that you’re making someone do everything or wait while you lay about and dilly-dally.

I once told someone, “I’m sorry that I’m tired! I can’t help it.” The reply I got was, “Everyone is tired in the morning.”

Ouch.


The Shadow Who Holds Me Down

Sleep paralysis. That’s what it is called. Terrifying. It is absolutely terrifying.

It feels like someone has bound my ankles and wrists and my torso by invisible straps. Look, I won’t even dabble in bondage for pleasure. For some strange reason, I have this fear that I’ll play around with an under-the-bed restraint system (I swear they have them) and a fire will break out and whoever is with me will take off and leave me there. I mean, they’re going to save themselves. I couldn’t imagine them knowing how to undo all the knots or buckles or whatever the fork it is that ties it all; while under pressure that a fire is happening and they need to leave ASAP.

Honestly, it’s far fetched but not impossible.

I’m sure those of you with similar (maybe more rational) fears, can understand my terror by feeling something that is way beyond my control.

I went on Pinterest to search up some information on sleep paralysis. I’d encourage you to do the same. The artwork is so dark and unfortunately, entirely true and relatable to me.

I try to wiggle my fingers and toes. My body feels like it is sinking into the mattress and my fingers and toes don’t move some days. I am yelling inside my head for my body to respond and it doesn’t. Some mornings for hours I sit inside my own head with the horrifying thought that I cannot move. Trust me, it doesn’t just happen while you are sleeping. With narcolepsy, it usually happens before falling asleep or when waking up.

All silly fears and jokes aside,  it is up there with some of the most scariest experiences of my life.

Do you know, how insulting it is to tell someone with a sleep disorder things like, “we’re all tired in the morning?”

Nope. No. You. Are. NOT.
giphy (1)

Trust me. 

And I wouldn’t want anyone to feel my level of fatigue and tiredness. Not for one second.

It is Chinese water torture for me. I don’t speak for all Narcoleptics but I think those knowing what I’m speaking of would most likely agree.It’s not always consistent. The only thing consistent is the fact that you walk around in a fog or that you are persistently and incessantly forking tired.

EVERY. DAY.

“You’ve never been THAT bad before.” Yeah. I have. I just don’t talk about it. And secretly (well not anymore) I set my alarm at 4am or 5am just so I can get up between 7am to 9am.

This is a reality of my narcolepsy. This is my everyday life. I didn’t just read a list of my symptoms and think ‘I am totally a narcoleptic. That sounds fun.’ giphy (2)

I swear that GIPHY is exactly what I like to do when people think this is all a mental fabrication.

Sometimes I don’t want to tell people. I don’t want to tell them about a struggle that seems this ridiculous. I wish I could say it wasn’t.

I am always looking for a routine to help me. I am changing routines and adapting constantly. Sometimes the routine is disturbed and I find ways to adapt. Just because someone doesn’t talk about what is happening with an invisible chronic diagnosis/illness, doesn’t mean it isn’t there. That it has worsened “suddenly” or that it isn’t happening.

If those of us with these invisible issues pissed and moaned about every single little thing that comes with those illnesses, could you imagine how annoyed people would really be?

We’re adapting too. We’re learning too.

I will never say I know everything about narcolepsy. Even specialists have just started to figure out the why and the how to this sleep disorder. I do ask to my fellow narcoleptics, family and friends of narcoleptics, to try and be patient with one another. I know I want to throttle my nearest and dearest when they are insensitive or lack empathy. But we are all learning. The more we know, the more prepared we are. We do need to talk about it. We need to be vulnerable to a certain extent with those closest to us. We need to find ways to be strong.

I have created a gratefulness journal at home. I really do find that on difficult days, it helps to focus on the positive. Even if I am writing it with my angry face on. It helps realize I am not drowning in the crappy things.

One day at a time. And the hard days, one hour at a time. Or is it, one nap at a time??

“Success is the sum of small efforts repeated day in and day out” -Robert Collier

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