Part of why I wanted evaluation for the urologic history is because I was having trouble sleeping.
I didn’t know when I prayed for God to resolve my enuresis that He would do so at the cost of being able to sleep soundly. You see, in order to wake up enough to go to the bathroom when the bladder filled – before triggering the automatic release – I would have to sleep very lightly. As in very lightly.
I have always been a night person. I function better at night. Heck, I’m writing this at almost 2:30 in the morning. My mind is clearest at night. I get very sleepy when I’m in the sun – and that indeed will be the subject of another post, as it relates to my medical history.
Even when I was small, I would lie awake for hours after being “put to bed”, staring at the walls, or the night light, or the books on my shelf that I wasn’t allowed to read after lights out.
I’ve worn glasses since I was in first grade, again about six years old. One of the things they would do to punish me if I did something they didn’t like was take my glasses away so I couldn’t read.
I land somewhere between biblioholic and hyperlexic, and I am indeed using the term hyperlexia properly. Most people know “biblioholics” love books. Fewer people know that hyperlexics have a compelling, undeniable, undefeatable urge to read which is actually a need to “decode”. I would get so desperate for the written word (I learned to read when I was three or four and never looked back) that if I didn’t have access to real books, I would devour fine print in magazines. I would read those tiny ads they used to run in the back of women’s general magazines. I would read publisher information in size 4 type. I would read just to be reading because it scratched the itch. I think that qualifies as hyperlexia.
But at night, after lights out, I wasn’t allowed to read. So I would stay awake until I finally drifted off to sleep, when my body would then proceed to betray me.
And once day broke, I would deal with the consequences.
One of the things I hated most about growing up was getting punished for going to the bathroom. Let me explain.
Anyone else who wanted to sleep in on a Saturday could do so without any problem. But if I tried to go to the bathroom then go back to bed – and get sleep while the sun was up, and it was easier – then I would get pounced on and they would say “You’re awake! Now you have to stay up.” I wasn’t allowed to go back to bed, and I was perpetually exhausted. So I would try to find ways to pee if I had to while staying in my room – a wastebasket lined with a plastic bag, which I would then dump out a window… or a large Ziploc, again dumped out a window… or who knows. Just anything to stay in my room with the door shut so I wouldn’t be pounced upon and made to stay awake when I was so very tired.
It didn’t matter of course that I was trying to contain urine because I was already wet at that point. But I didn’t want them to be able to say I was ever doing it consciously, ever.
All in all, it was very difficult growing up in that kind of situation.
When I was evaluated as an adult, after much trial, I was eventually evaluated for and diagnosed with sleep apnea via polysomnogram. I also underwent a multiple sleep latency test to evaluate for narcolepsy since I spent every day exhausted. I didn’t have narcolepsy, but I did indeed have apnea, so I was issued a CPAP (continuous positive airway pressure) machine, which I still use.
Of course, apnea was never the main or original problem, but it became the most treatable problem.
Most people with sleep apnea are assumed to have as their main pathology an airway that closes while they try to sleep. They then wake in microbursts just enough to resume breathing, then fall asleep again. This disruption of sleep causes the exhaustion untreated sleep apnea patients experience. This intermittent airway closure also often causes snoring. Many sleep apnea patients get evaluated because their spouses or partners get tired of the snoring and insist they be seen.
I just wanted to be able to sleep.
It didn’t help that at that time, transcription at the hospital level was a “during the business day” kind of job and not the 24 hour industry it is now. I began working at East Cooper in 1994. Back then, many of our systems were either local – we typed documents in WordPerfect and saved them to a database – or self contained, such as our radiology, which had its own hardwired interface. I had to be at the job during the day in order to complete dictated reports during the day when they were needed.
Then I got pregnant – definitely another post, because there was a whole medical saga leading up to that – and in 2000, with all the Y2K computer compliance stuff, suddenly transcription became internet-based, and I became able to work from home, which was necessary with a newborn. My son and his medical issues are another story, which I may or may not reference here as it applies.
But sleep never got easier for me. I currently run my CPAP at over 15 cm H2O (the standard pressure measurement for CPAP is in centimeters of water, a unit many are unfamiliar with, even if they have heard of millimeters of mercury or mm Hg). Yes, that’s a high pressure. But it means when I lie down, I can breathe. And whenever I lie down, even if it isn’t for very long, I put on the CPAP because, well, I kind of like breathing. It’s compatible with life, and not breathing, isn’t.
I have spent the last 30 years wishing to sleep and not being able to.
That’s a very long time.