woman asleep at desk

A Day in My Life With a Rare Sleep Disorder


It is hard to understand the pain of another with no physical trace of evidence. To think there is a ghost living within a person who is standing right in front of you. But here I am. I cannot ask for much more than for those who love me to try to understand my ghost. To embrace this battle I have within myself and support me through my symptoms. The ugly ones. The ones that make me antisocial, bitter or just plain confusing.

To anyone who does not understand my neurological condition and how it affects me physically and mentally, I want to give you a snapshot of my life. Just one day:

6:15 a.m. OK, my first alarm went off. Before I snooze, take my meds. So when the third alarm goes off, maybe I will be able to get up.

6:45 a.m. Third alarm goes off. Snooze…three minutes.

7:00 a.m. *that really annoying, I-really-have-to-get-up-now alarm* Crap, I have 10 minutes to brush my teeth, get dressed and get something into my stomach. But do I want to eat yet? My meds are more effective sometimes when I don’t eat for a little.

7:45 a.m. I’m starving.

 

8:30 a.m. I’m still not awake. Maybe I should take more meds. But I don’t want to overdo it, because I know the max dose is 55 mg and if I take another one now then I might not be able to take another later. And then I might crash by 2:00 p.m. really hard.

9:30 a.m. My body aches. I am going to take my meds. Maybe just a half. That will get me to lunch. Then I’ll take the other half at lunch.

11 a.m. Where’s a couch, a dark space, a bed? My eyes are burning and my body is aching.

11:15 a.m. OK, I feel a little better since I got to lie down. “Want to do something tonight?” Text. Heck yeah, I want to!

11:27 a.m. *lunch-is-over alarm* I’m not going to make it.

12:00 p.m. Take the second half of the med. You will perk up for the rest of the day.

12-12:45 p.m. Why can’t my meds make me feel immediate relief? Like I just take it and I’m cured?

1:15 p.m. I feel almost awake! Woohoo, why can’t I feel this good all the time? *cracks joke* Whoa, where’d that come from? I have a personality?

2:00 p.m. *watches clock* This is where I plan out if I physically and mentally have enough strength to plan to do anything after work. No groceries, gym, making dinner, showering for me if I feel my body shutting down! I’m not hungry when I’m asleep!

4:00 p.m. Phew. Clock out time. I made it another day. This is where the exhaustion actually hits me like a wave. My body melts into my car seats. Music is too much stimulus. Will anyone be home that might talk to me when I get home? Because I need my bed. And I need quiet. My mind hurts. I’m void of emotion and the energy to care about relationships.

5:00 p.m. I love how I feel after the gym. I love the transformations I am capable of making. My body is not going to get stronger or leaner by lying in bed. Humans are not made to lie down forever. Go to the gym! You will regret it if you don’t. And think how good you feel after.

5:20 p.m. “Are you coming to work out today?” No…sorry. Wow, what a waste of money.

6:00 p.m. You skipped the gym again to lay in bed…really? At least get up and do your laundry or something. “Are we still hanging out tonight?” *has excuse why I have to cancel plans from five hours ago*

8:30 p.m. Oh, I fell asleep for two and a half hours? Guess I should eat something. Well the good news is at least I know I can still sleep all night, no problem.

10:00 p.m. My laundry is still not done. Are you gonna shower? No, I’ll do it in the morning.

10:30 p.m. Can’t I just drop out of everything and sleep as long as my body lets me, for a year maybe? Maybe I just need to catch up on all the sleep I’ve missed throughout my life and then I’ll feel better…

6:15 a.m. *first alarm*

I have a rare sleep disorder. I’m not embarrassed of it. I will talk freely of it and without guilt of doing so. It is not by my own personal error that my brain has faults within itself.

8:00 a.m. me could be happy, dancing across the room with a big smile on my face. I am free and positive and everything people like to be around. 4:30 p.m. me could physically have an urge to scream that is so overwhelming I cry big, silent crocodile tears and curl up in a ball and stay in one place for the rest of the day.

To someone who loves me: I know it’s hard you’ll never know when I’ll be which, but just take the time to imagine what it is like for me. I never know either. And I really don’t enjoy the one you don’t like, either.

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Thinkstock photo via golubovy.

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