Harrowing Sleep Disorders

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My sleep disorder is congenital. It took me a lifetime to figure out and understand what it is and why I have it.

I'm currently 43 years old. I was originally diagnosed with DSPS (delayed sleep phase syndrome) when I was 16 years old. However, by my 30s my condition had evolved into Non-24 Hour Sleep Wake Disorder.

I have been symptomatic since birth. My mother told of how I had sleep reversal during infancy (awake at night, sleeping during the day). My earliest memory of being sleep disturbed was around 4 to 5 years old; I was wide awake at 2AM and knew this was very odd.

It was VERY difficult, and even physically painful, for me to wake up early in the morning to go to school. Back in the 80s, we didn't have television like it exists today and so people from that time will remember Saturday Morning Cartoons. It was a marathon of cartoons on Saturday mornings that concluded at noon. I remember being so sad and upset that I missed Saturday Morning Cartoons because I would wake up just as they were over for the day (and for the week!).

By my teen years, I was constantly getting detentions and in-house suspensions at school due to chronic tardiness. I was diagnosed after a sleep study with delayed sleep phase syndrome but was also diagnosed with a cardiac condition at the same age. My cardiac condition is exactly like my sleep disorder; both diagnoses are different now from what they were when originally diagnosed.

As a result of my horrible sleep disorder, I did not graduate from high school and at 19 years old had to place my two children into foster care.

During my 20s after my children returned to me, in order to make life work I used to have to stay awake for 2 days at a time. This was extremely exhausting. I could not keep a job and suffered chronic tardiness. I finally became fully disabled at 28 years old.

My children returned to foster care and by 33 years old, I was completely alone. Non-24 Hour Sleep Wake Disorder emerged instantly but it would take some time before I understood what it was.

It was my grandfather. My mother's father had narcolepsy. I was astounded that it took a lifetime to make the recognition. I spent a lot of time with Bampi when I was a little girl. My teddy bear grandfather was always either sitting on the couch nodding off in front of the TV or sitting on his bed in his bedroom nodding off in front of the TV. He did little else and I cannot recall ever seeing him outside. He didn't work or drive. He nodded off constantly, several times an hour all throughout the day.

I knew that my grandfather had survived polio early in his life (he was born in 1919). I began to research and learned there is a link between polio and narcolepsy. Certainly, polio had caused Bampi's harrowing sleep disorder. And, damaged his genes.

I learned that Non-24 is most commonly found in blind people. Well, ha. One of my aunts was born legally blind. She could see with glasses but during her early years it was "coke bottle glasses" which meant the lenses were quite thick. It's known that sighted people can have Non-24 and also known that people with DSPS sometimes later develop Non-24. After connecting all the pieces and concluding with my aunt, it was then that I realized how I have this life destroying sleep disorder. I'm lucky to be sighted but very unlucky to have this disorder.

I describe my experience with Non-24 by comparing it to the phases of the moon. Each week, my cycle shifts so that I'm always moving ahead through the clock. I tend to run on an 18/8 cycle (18 hours awake, 8 hours asleep) when I'm shifting. For example, I woke up at 4:22PM yesterday and 5:45PM today. My sleep time was delayed by about 2 hours (went to sleep around 7AM yesterday but 10AM today). Within a week, I will have cycled forward so that next week I'll be sleeping at 2PM and waking at 11PM. The week after that will be sleeping at 6PM and waking at 2AM. And on and on it goes until after a month, I look like the moon having cycled through all its phases.

It's miserable.