Circadian Sleep Disorders Network - Advocating for people with misaligned body clocks
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Amy's Story

Today is the very first time I've ever heard of Delayed Sleep Phase Disorder. It describes my life, and my sleeping habits, to a T:

At the age of 10, I got my first period. It was at this time, while getting up for school in the 5th grade, I would fall asleep in the bathroom while getting ready. I seemed to prefer staying up late, reading books. My mother would yell at me to go to sleep, but I would toss and turn wide awake, and then stay up for hours reading my favorite books. Every day, at 7 am, if I managed to get up at all, I'd not be able to stand up, would lie down on the floor just for an extra second of sleep...and would not be able to wake up. My mother would scream at me and told me how awful I was all the time.

Waking up seemed to be an impossible feat. My stomach would hurt, it was a weird queasy kind of nausea. Anything I ate would make me feel sick. I'd be dizzy. I couldn't move my limbs. My vision would be blurry.

ALL OF THIS IS STILL TRUE TODAY IF I TRY TO WAKE UP EARLY, and I'm 34 years old.

Once I was babysitting, and had to get up at 5:30 am to get the kids ready for school. I got dizzy, tripped, and my face landed on a doorknob. It gave me a black eye. It was very nice how many people asked me who did that to me, total strangers worrying my boyfriend had beaten me up. Then I had to explain the real, ridiculous story. "Oh, yeah....actually, I just woke up too early, got dizzy, tripped, and my face landed on a doorknob."

I've never understood what was wrong with me, but have been judged for being lazy, unreliable, and irresponsible, because I can't get myself to do things early in the morning...sometimes even in the early afternoon. I don't have lots of energy til after 2pm. I can't sleep before midnight, sometimes can't sleep before 3am. No matter what, I can't get to sleep until late. If I go to bed before midnight, I sit there wide awake. Restless. I just can't do it.

This year, I'm starting a new part time job, where I need to be there at 9am, one day a week. I'm so worried about it. I asked to start later, and there is flexibility and I could start later, but somehow I'm not starting later. I don't feel I have anything to back me up, to explain why 9am will be problematic for me. I couldn't say to anyone, "I have a medical condition where my sleeping patterns are messed up, and since it's not impossible to start later in the day, I'd much prefer that"—because nobody has even heard of delayed sleep phase disorder.

My first semesters at college, I got a 4.0 grade average. However, I've never finished college because I can't wake up for early morning classes...and by early morning, I mean 10am. Which is not early in normal human time. But for me, 10 am is impossible. I tried for many years, and spent lots and lots of money. I kept sleeping through classes, feeling worthless and lazy, and eventually gave up...wasting my money, ruining my academic record, and not reaching my potential.

This thing has affected my life since I was 10 years old and I'm so sick of it. I cry, feel lost, feel unsuccessful, feel miserable...it is stressful. Stress isn't healthy.

My sleeping habits cost me a job where I needed to be there at 10 am, just one day a week, last year. I was full of enthusiasm for the job, qualified, and there was indeed some flexibility in the scheduling, but because they preferred I get there earlier, and I had never heard of Delayed Sleep Phase Disorder til now, I had nothing to respond with. I just thought I was lazy, and horrible. I couldn't say, I really need to be there later because I have a legitimate medical condition, like blindness, or diabetes. People don't understand it. They think it's ridiculous. I tried to be there at 10am, and every week, it got more and more difficult. I couldn't do it in the end. I just gave it up, without knowing what to say, because I didn't have an answer for why I couldn't just go to bed earlier and wake up earlier.

If you could only feel what I feel when it's 8am, and I can't wake up, when my vision is blurry when I try to wake up, when I get up and I'm dizzy, when I can't walk straight, when I can't get my eyes all the way open, when I can't move my limbs even though I'm somehow awake, you would know how real it is. Maybe you could understand how much it would help people like me, if the NIH would legitimize this condition by the very simple act of putting it on its website if only more doctors would recognize this condition and its severity.

I would love to go see a doctor who understands this condition and takes it seriously, now that I know it's a real thing that exists. I've never been diagnosed with the condition, because no doctor has ever told me it existed. I figured going to the doctor was pointless, when, one time, I was 18 or so, I went to a doctor, complaining that I was tired all the time, and I couldn't wake up early. He didn't do one single medical test, or ask me any questions. He looked at me from across his desk, and said in a very scornful sounding voice: "You're depressed. See a psychiatrist." And handed me a card for a psychiatrist. I felt totally lost. He didn't help me, but still got to be a doctor, make lots of money, and go on vacations, have a house, and everything. Now that i'm 34 and my life has gone on for so long this way, I can't have my own home, my own children, or even vacations, because I can't do all the work I need to do. I'm resigning myself to a life where I will never be a mother, because I can't wake up early. I'm resigning myself to a life of scrambling to make everything work somehow, without having to do things before noon. (There are some days when noon is even too early for me.)

To continue the story....It's been a few weeks of getting up early for my new job, and I'm feeling quite tired. Every night before I have to work early the next day, I wake up multiple times during the night, checking the time. I guess I'm really nervous about sleeping through my alarm. It's like I'm on super high alert stress mode. This morning in the shower, I couldn't remember back to three minutes previously, if I had already shampooed my hair or not. It's kind of funny, but kind of sad. I've managed to get up on time each time, but I'm constantly tired every day, even days I don't have to work.

THAT"S MY STORY, THANK YOU FOR READING IT! I hope you enjoyed the part about the black eye. I think it's a funny story.

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Last modified Aug 9, 2016
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