Move over, Cookie Monster....."C" is for Crappy

I would venture to guess that most people don't think about sleep. It's something second nature--like breathing. At some point in a 24 hour period you usually do it. The positives of sleeping are endless with a lot of physical, mental and emotional benefits. I would also venture that the only time sleep is on the table for discussion it's because a. you're not doing enough of it b. you're doing too much of it or c. your crappy at it. I fall under the "C" category.

For as many years as I can go back, I can relate to sleep troubles. Until two years ago, I really thought the problem was frequent night wakings, thus on most day, not feeling refreshed or restored. When I was a kid, even though I knew I wasn't sleeping well, I did enough of it that I did not really feel the effects. As a teenager, it definitely started catching up with me. Between school, working part time (usually 20-25 hrs per week) and my social life, I was beginning to feel drained. I could easily sleep until noon and still be tired all the time. College was the time when I was subjected to being the butt of many jokes about going to bed so early (by 10 p.m. most school nights). True, I was also the one who often scheduled the 8 a.m. classes but there was definitely more sleeping going on by me than my numerous college buddies. My friends often existed on half the amount of sleep than me, and yet our sleep debt was probably equal. I was always tired and my friends razzed me about it frequently.

In the early 90's I did an overnight sleep study and they found nothing of consequence. Yes, I woke frequently probably averaging 5 to 7 wakings in one night but nothing "treatable". Up to that point I could only remember sleeping "through the night" one time. It was the night I came home from Trout Lodge 6th grade camp. I slept 10 hours consecutively without remembering any wakings. That was heaven.

Fast forwarding to the late 90's I attributed my chronic fatigue with the demands of being a new wife, and full time step mom to Tony's two young school aged sons and still working 40 hours a week at the local power company. The demands were great and the quality of my sleep had reached an all-time low. Unfortunately, adding my first newborn child to the mix did not help matters. I was a stay-at-home mom at this point and with the continued demands of (step) mothering and being a wife, while dealing with an interfering ex-wife, I was convinced  that whether I had sleep issues or not, stress would keep the quality low. Adam was sleeping through the night by 9 weeks old and I was wondering what was wrong with me that my newborn son could achieve something I could not--restful, sound sleep.

Elise was my breaking point. God love her, she was a lousy sleeper. She finally slept more than 3 or 4 hours at a time at 13 months old. But by now I was at an all-time critical low. I was literally exhausted and had nothing to give back into my marriage. My marriage--my family---my life was all in crisis. I felt I had nothing left to give Tony once the kids were down for the night. I was too tired to care. Our counselor suggested looking into my sleep issues again. Fifteen years had elapsed since my last sleep test and surely technology had advanced. Maybe someone could get to the bottom of it.

During the summer of 2007 I began treatment at a sleep clinic. The initial visits were profiling my risk factors. The highest risk group for sleep disorders include overweight, smoking and drinking males. Over-weight, no; smoker, no; drinker, social only; male, nope. However, profiling my youth showed strong indicators. Growing up I was prone to frequent (weekly) sleep walking, snoring and night terrors. My risk just got greater. We inventoried my sleep patterns and behaviors and by all accounts by the doctor, I was doing everything right and sleep-conducive.

Once the history and likelihood of finding something was established, I participated in an over-night sleep study through our local hospital sleep clinic. Properly attached to 25 to 30 electrodes I was ready to sleep. I was given from 10 p.m. to 6 a.m.. No more, no less. Fortunately, I feel asleep quickly, which actually was quite the norm. Falling asleep was never the issue--staying asleep was. That night was typical, as typical as it can be for having three sleep technicians watching your every movement via the little mini-cameras set up around my bed and having 25 to 30 wires protruding from about every area of your body. I recalled waking up my average 5 to 7 times over the course of the 8 hours, easily falling back to sleep.

Upon wakening I asked the technician 'how I did'. Well, you had some mild sleep apnea episodes-about 3 or 4 an hour, but nothing remarkable, The doctor will let you know". I must say I left there somewhat dejected. OK, so not breathing 3 or 4 times an hour is acceptable and will likely be overlooked. What else could they actually find, I wondered.

Well, wonder no more. My sleep doctor had an impressive file in front of her as she sat me down in her office. She reiterated that I had mild apnea, not necessary to treat. She explains that the average person will have up to 2 to 3 apnea episodes per hour that is acceptable. I am probably pushing the upper limits of acceptable, but we're going to table THAT. However, she continues, I found something almost unimaginable. You woke up 162 times in 8 hours. For good quality sleep you should be in REM stage 40 to 60 percent of your night. Bonnie, you stayed in REM .2 percent. Basically, honey, she says with a sympathetic tone, you aren't sleeping.  Your brain is waking you up idiopathically every 3 minutes. There is no quality of sleep. No wonder you are tired.

Wow! I wasn't sure whether to be relieved or devastated. Perhaps I was a little of both. For the first time in my life I felt validated and actually vindicated that after 40 years of crappy sleep there was a cause--a real medical reason. Over the years I had been harassed and given a hard time by various people in my life. Finally a cause. But the hard part, a solution had to be found. The real work was about to begin.

Unfortunately, sleep medicine research is still a work in progress. Right now, it is more about managing than curing. And, unfortunately, it involves medication along with behavior modification. The good news is that I had already established healthy patterns. I am thin, exercise regularly, eat healthy, non smoker and limited alcohol. I also only consume only 2-3 cups of caffeinated beverages a day. All the right behaviors.

Medications, however, are plentiful but a surprising mix of drugs. For the most part they use old school drugs that were once used to treat psychosis, depression and other mental illness to treat sleep disorders. Quiets the brain and causes drowsiness. Initially there were definitely more misses than hits. All the medications had various side effects: initial drowsiness until the body adapts, often lasting up to 2 weeks, restless leg syndrome, insatiable appetite, weight gain; headaches...the list was endless and, unfortunately, it seemed like I was plagued by the possible side effects, often not tapering off with time. Just one night with the restless leg and I was going to create sleep problem for my poor husband, much less curing mine! The increased appetite was so severe in one case I literally could not stop eating. I was gaining 2 pounds a week. That is fine short term, but long term, it wasn't going to work. Curing one problem but creating another.

During the last two years my dedicated physician has added another doctor to my team. To quote her she said "You are one of the worst cases I've ever seen. I'm a little stumped how to help you You are one of the toughest cases I've ever had".  These two years have been both frustrating and enlightening for me. I guess I had hoped for the "miracle cure" when really all we can do is hope to manage it. Insurance only pays for a sleep study once every two years so I will participate in another one this fall to see if they can see anything new. They are always making advances in medicine and sleep research is no different. They are able to look at brain patterns and see what neurons are firing and misfiring. The medication helps and for that I am grateful. But at the same time now that I know that I should feel better and feel more rested. The doctors and I are curious what sleep patterns I have while on medication. Obviously, I don't remember waking up 162 times so I don't know how much the drugs are really helping.

My current situation is that I sleep anywhere from 4 to 6 hours uninterrupted, but then I have hourly awakenings, if not even more frequent than that. The bottom line is that I am still tired--far more than I had hoped two years down the road. But as I told my doctor. "I feel better today than I did two years ago...if this is as good as I'll ever feel then I'll live with it. In the meantime, we'll keep working toward something better".
My amazingly dedicated doctor left me at my last appointment with encouragement. She said that the fact that I get out of bed each day and am not only functional, but highly functional and contributing is amazing. I should be applauded for not letting this be my excuse for laziness. You fully engage your family, your community and are honest about your limitations.

I silently suffer and I am often met with lack of understanding of how difficult this is because it is not able to be seen or touched. Unless you've been there for extended periods of time, you really can't relate. But I have someone on my side--and for that I am grateful!!