Monday, January 12, 2009

My Battle with the Enemy: Sleep

If you want to stay on my good side, don't ever, and I mean ever, give me advice on how to get a better night's sleep. Well, if you're an actual sleep doctor, then I might listen to you. Otherwise, keep your trap shut.

It has been so many years since I've had a normal night's sleep that I'd have to stop, think really hard, and count on my fingers to figure out just how long it's really been. It's easily been over seven years, and that's with sleeping pills.

I have Delayed Sleep Phase Syndrome (DSPS), and I have Sleep Apnea. Most people know what Sleep Apnea is: you stop breathing or take shallow breaths in your sleep. This interrupts your sleep, stops brain activity, causes headaches, and can make you feel sluggish the whole day. A lot of people with Sleep Apnea sleep with a CPAP machine to help them breathe. You wear a mask that blows air into your face so your airway stays open. It's incredibly cumbersome and I was never able to adjust to it. I can't get to sleep as it is, so it was kind of a joke from the beginning that I would ever be able to sleep through the night with a mask on my face.

My Sleep Apnea problem is quite minor compared to my Delayed Sleep Phase Syndrome. It almost sounds like something made up, right? Oh, if only it were so.

I don't remember ever sleeping normally. As a child it took me hours to fall asleep. I'd get so scared in the meantime that I'd usually end up running into my mom's room and sleeping with her. Granted, I also suffered from some serious traumas as a child that added to the bumps in the night, but even without having a drive by on my street or a shooting on my school playground (both while I was outside playing), I still would have not have been able to sleep at night.

The mornings have never been my friend. I remember in the first grade my mom would wake me up for school and I'd beg for 30 more minutes. "Mom, I'm finally sleeping! Pleeease!" I'd cry.

My sleep troubles continued throughout elementary school, junior high and high school, but I managed very well. I usually had loads of energy, was involved in after school activities, volunteer work, and an active social life, all while achieving straight As, or darn near close.

My junior year in high school I got Mononucleosis, again. I had already suffered through it in 8th grade. I eventually got over the Mono, but I never really recovered. I was tired all the time. I'd come home from school and take a nap. Then it got to be too much and I couldn't get up for class. I just wanted to sleep all day, but I still couldn't get to bed early at night. It wasn't depression or anything psychological; there was something very wrong with my body.

In addition to not being able to sleep at night, when I did fall asleep, I'd literally wake up on the wrong side of the bed, with the sheets torn off my bed. My mom knew there was something off with my sleep. She bought me deep pocket sheets and we clipped the sheets down to the bottom of the mattress.

Still, no one had believed me when I tried to explain how I watched the clock tick by hour after hour and I couldn't sleep. No one believed me when I said I didn't dream or that I constantly woke up all night. My mom and step father had laughed at me when I told them I only dreamed in the afternoon. "It only seems like that, Laura," they'd tell me.

Then I had the sleep study that changed my life. Or at least, it gave a name to condition I'd been suffering from for so long.

After being hooked up to all sorts of electrodes and being monitored for a night, I was diagnosed with Delayed Sleep Phase Syndrome. My circadian rhythm was off, making my body the most alert and awake at night. My sleep study revealed that it took me hours to fall asleep, then I woke up every 30 minutes, until the last couple hours before they woke me in the morning when I was finally able to get some real sleep. When I did finally fall asleep, I flailed around so much that some of the wires came off my head and I had to be woken up to have them reattached. I didn't go into R.E.M. sleep, either. I finally had proof for all I'd been saying.

After I was woken up in the morning from my sleep study, I stayed at the sleep clinic for a nap study where you watch TV or read a book for awhile and then are put back in the exam room to see if you'll fall asleep, and how quickly. I fell asleep every time. My body was exhausted from getting such poor sleep during the night. The nap study is a test for Narcolepsy, which is really nothing like you see on TV or in movies. I wasn't diagnosed with Narcolepsy because it was decided I was probably falling asleep from the lack of sleep the night before, but it was a close call.

The treatment for DSPS was sleeping pills, light therapy and a change of lifestyle referred to as better "sleep hygiene." In the mornings my mom would open my blinds, turn on bright lights and this, in addition to taking Melatonin, was supposed to alter my circadian rhythm and trigger my body to want to wake up in the mornings. I slept right through the blinding light. I wasn't supposed to watch TV, use the computer in my room or do anything in bed but sleep. If I wanted to read at night, I had to go out of my room and sit on the couch. The idea is that the bedroom is only for sleeping. This was a pain in the butt, and it did not work.

The sleeping pills, however, did help. For the first time in my life, I was sleeping through the night. I wasn't really getting to bed any earlier. I still wasn't tired at night. I was still wide-awake at midnight, but I wasn't tossing and turning all night long. It felt like a miracle. I still couldn't get up in the morning. I went to college and had to take all afternoon classes. I could not do mornings. I was still tired, but less than I had been before the pills. The pills were everything to me.

This was before the television was flooded with ads for Lunesta, Ambien and all the other pills. This was before these pills were on the market. I was put on Restoril. I took the highest legal dose. My body became dependent upon these pills. I don't like being dependent upon a pill. I don't even like taking pills. I've tried the Lunestas and Ambiens and so many different pills that I can't keep track. Often sleeping pills have a reverse affect on me. I stay up all night on them and don't fall asleep until after 8 in the morning. Lunesta worked for a while. Then my tolerance to it was too high. I tried switching off between Lunesta and Restoril, but I just stopped sleeping whenever I was on Lunesta. The Restoril started to lose its power over me, but it never stopped helping.

I started Restoril around seven years ago. It doesn't make me tired at night. I can take it at 10 p.m. and not fall asleep until 5 a.m. It does still help me sleep through the night. This is never more apparent than when I am without it.

I think not being able to sleep at night is one of the worst feelings in the world. To spend hours tossing and turning only to drift off for 15 minutes and then to be awoken by the quietest sound is torture. I recently switched from private health coverage to Kaiser. I don't have my first appointment with my new doctor for a couple more days. I am down to one Restoril and I'm saving it for the night before my appointment so I can be coherent enough to tell the doctor of my problems.

Last night I took two Tylenol PMs and a dose of Robitussin PM. (I've had a cough for years now.) I slept for an hour or two before the medicine wore off. Then the struggle to fall back asleep and stay asleep began. I turned from side to side in a relentless effort to get comfortable. I tried breathing techniques. Counting sheep has never helped. I prayed. I begged for sleep. It's not that I wasn't tired. I just couldn't sleep. I almost cried. Five or six hours later, I finally started sleeping. I awoke in the afternoon gasping for breath (the Sleep Apnea) and was just as tired as when I lay down for the night. I dragged myself to the bathroom to relieve my bladder and then had to lie back in bed for another 30 minutes to try and wake up enough so I could pour a bowl of cereal without spilling the milk everywhere.

I have tried every doctor-recommended remedy for sleep. I have even been sent to the Stanford Sleep Clinic, the foremost authority on sleep. No one has been able to cure what ails me. They've just made it more manageable. I don't take morning appointments. I can't take a job that begins before noon; even noon is really pushing it. (My brain doesn't really wake up until around 2 p.m.) I've actually been chosen for a great job, only for the offer to be rescinded when it came time to decide on hours and I couldn't be there at 11 a.m. It took me longer to finish college because I had to be so selective about my schedule. I can't attend church regularly like I would like because someone long ago decided church should begin in the morning.

Anytime someone suggests I take a hot bath before I sleep, have a small snack, do meditation or read a book before I sleep, I smile and say, "I do that almost every night." In my head I scream, "If only that would work! Don't you think I've tried that! Ahhhhh!" Anytime my mom suggests something like forcing myself to get up early one morning so that I'll be tired for the night, I have to bite my tongue, hard, and restrain myself so I don't punch her in the face for suggesting something that I've tried time and time again and which has never worked.

I can get up at 6 in the morning, be tired all day, and then around 10 p.m., my body will wake up and my mind will be the clearest it's been all day. If I've managed to fall asleep early, I will inevitably wake up after a couple hours sleep and not be able to get back to sleep for another six hours.

So don't ever, ever, suggest anything to help my sleep, unless it's the name of a really good Kaiser sleep doctor. I won't yell at you if you do, but you can be sure I will be picturing my fist in your face.

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