I've mentioned hypersomnolence on the show many times, but what exactly does it mean? How does hypersomnolence affect one's day-to-day life?
Of course, "hyper" means too much of something, and "somnolence" means sleepiness. And I have been dealing with this strange and debilitating condition for the past six-plus years. The official diagnosis is idiopathic hypersomnolence; "idiopathic" simply is medspeak for "We don't know why the hell it's happening." More frequently than not, it seems, idiopathies end up being caused by brain pathologies, and recent studies on this condition point toward the same.
Another term used is primary hypersomnolence; this means the problem is due to its own cute self and not something else going on in the body.
Hypersomnolence can also occur due to other health conditions, such as cancer, in which case it's known as secondary hypersomnolence. Whatever is happening to me is slow-moving, and most cancers aren't, so I'm not overly concerned about that. As any faithful viewers know, I suspect I may have myotonic dystrophy and am waiting for my DNA results as we speak. This is a genetic neuromuscular condition, and one of its hallmarks is--you guessed it, sports fans, hypersomnolence. But whether or not I have myotonic dystrophy, there's no doubt (and I have scientific evidence, as described below) that I have, indeed, been blessed with hypersomnolence. Lucky me.
I've always tended toward sleepiness, particularly having trouble waking and getting out of bed in the mornings and, in recent years, the afternoons and even some evenings. Yet I managed to get going all through school and most of my work years, kicking and screaming all the way. I used to sleep in until 1 or 2 on the weekends and would feel a little guilty for it--but that was nothing compared to what I've experienced since 2006 or 7.
I was teaching college English at the time, entering my critical year--the year when one is "up" for tenure. Three months before I was asked to resign my job because of my health problems, I'd been told by the president of my college that I was a "shoo in" for tenure, despite medical problems that had already manifest by that time.
It's true--the sleepiness had begun to affect my job. My Chair in the English Department teased that I should attach some sort of electrical shocker to my body to help me get up when the alarm went off. I was having to take naps during the day in my office, something I'd never had to do before, and I was missing meetings because of it.
I did still give 100 percent of what energy I had to my students, however. I truly wanted to help their writing get better, as I believe writing is the key to unlocking academia and any professional life. Though there were some 100 of them, I knew each one and wanted each one to succeed--and I wasn't going to cheat them.
They hadn't named me "Most Unforgettable" (second only to the cafeteria lady!) in an impromptu student poll for nuthin'! Diminished as my energy was, though, other parts of the job began to slide as I fought to stay awake and focused . . . and alive.
But then I was admitted to the hospital for suspected heart failure based on other--but I'm quite sure related--symptoms just as the fall semester began. After my five days in intensive care and several invasive procedures, the docs decided they'd overmedicated me with hypertension meds and cut them back, then cut me loose.
What followed afterwards was a nightmare I will one day chronicle--but it's so bizarre I hesitate to bring it back to life in words, believe it or not, given how words tend to pour right out of me these days.
And so I lost my job because I couldn't teach the classes they'd scheduled me for as I lay in the hospital, my mind divvying up my worldly goods among my sons, my fiance, and my friends because my heart was failing. And apparently it is, slo-o-o-w-ly. Thank heaven for small favors, though actually every day I'm alive is a gift, as an acquaintance I met in India when still feeling relatively healthy in 1999 was fond of saying, and I must still agree, even as the days get tougher.
I was asked to resign in September 2008, which I refused to do, and I was terminated just as the subprime debt crisis rocked the financial markets and launched the recession we are still more or less in. (I maintain we're headed for a Much Bigger Fall, but that's another topic.) In Appalachia, jobs that could support me became virtually nonexistent. And I questioned whether I still had the energy and ability to take a job that could support me--or any job, for that matter.
After my release from the hospital, the hypersomnolence took over in earnest. Mostly what I did for those 13 months was sleep. I didn't get of bed except to pee (and even that disturbingly rarely) and perhaps heat up a bowl of soup.
The first thing one might suspect regarding my days in bed is that I was depressed. Lord knows doctors will jump to the psychological explanation right away for these mysterious diseases of the mind. Yes, I was depressed about losing my dream job for something completely out of my control--but that was situational depression, to be expected given the circumstances. Something more was clearly going on.
Finally, I was rehired by my former employer, a non-profit health education agency where I'd worked as a grant writer, medical librarian, project coordinator, and Webmaster for five years before teaching. (It's a small place, so everyone wears a lot of hats). The terrible thing was I was hired to replace a dear friend who was dying of ovarian cancer, and that's a lousy way to get a job. Just one more reminder of how fast our lives can change. And end, often in terrible ways.
The leadership had turned over since I'd last worked at the agency, but my new boss was supportive even as I told her that I was battling some kind of sleep problem. I promised I'd be there by 10 each day and work till 6 or later.
I was certain I could do it. I believed I could make myself do it. I never would have promised otherwise. All my life, I've been able to make myself do stuff--difficult stuff. Even waking up.
Through my work years I'd had start times of 6:30 a.m. (as a Bob's Big Boy waitress for several years during and after high school), 8:00 a.m. (when teaching college English at a local high school), 8:30 a.m. (when working as an academic reference librarian and, earlier, as a senior secretary at a NASA contractor in Greenbelt, Maryland), and 9:00 a.m. (for most of the jobs I'd held). Certainly, adjusting my schedule to get up at 9 a.m. to start work at 10 would not be difficult.
I was thrilled to be working again, of course, especially so at the job I'd enjoyed most in my long, varied career--though teaching, I still feel, is my calling. Teaching is just a heck of a lot more stressful. This job, on the other hand, allowed me to flourish because my creativity was valued and useful--and brought in money.
But, wish and try as I might, I could not keep my promise to be at the office by 10 a.m. I'd set my alarm on my phone and and leave it across the room so I'd have to get up out of bed when it went off, which in the past had always worked.
Back in the good old days, once out of bed I could manage to stay awake. That's how I'd gotten through high school--I'd found an old-fashioned alarm clock loud enough to wake the dead. After using it for a while, my body would wake me up 30 seconds before it was due to ring. No matter how deeply I was sleeping, my internal alarm clock jarred me awake just before the devil's scream. I'd run across the room, heart pounding, to turn the alarm off before the god-awful sound blasted. And that adrenaline burst would keep me awake.
Unfortunately, my phone doesn't have an alarm like that, and I don't know where I'd find a clock like the hellish beast that kept me from missing the bus to school. How I missed it when trying to get up for work. They just don't make things the way they used to!
Now, when my phone would beep at me from across the room, I'd stagger over, shut it off, and crawl right back into bed, all while pretty much still asleep. And I doubt even that old black-magic clock would work today, so stubborn is my body's determination to sleep.
So, no adrenaline rush from the terrifying alarm clock. And, perhaps exacerbating the issue, no adrenaline rush about being late to work, as much as I hated being late.
I felt like a failure, like I must be some lazy, pathetic person if I couldn't even make it to work by 10 a.m., or noon, or 2 p.m., or 3 some days. I had to face my shame and embarrassment, and the raised eyebrows of my coworkers, each day I straggled in hours after my supposed start time, but those just weren't enough to spur me, as awful (and they were awful!) as they were.
The will was there, believe me. I beat myself up constantly for oversleeping, apologized nonstop, swore I'd do better. But most mornings, if nothing special were planned, I just didn't get that extra little rush of adrenaline I needed to break through the coma-like hold sleep had on me.
Some days I couldn't get out of bed at all. Lots of days, actually. Sometimes lots of days in a row.
If I had a cold or if I'd exerted myself too much (which didn't take a lot), I could easily sleep for 16, 18, 20, even 24 hours at a clip. The sleep was so deep, I almost felt as if I were living two lives--the awake life, rarely, and the deep, subconscious, rich sleep of dreams. And I did dream. Bizarre but very, very realistic dreams that felt almost like real life. Just thinking about one of those dreams would put me right back to sleep.
When I was awake and out of bed, I stayed awake just fine. No sleep attacks as in narcolepsy. But I was tired, and my brain didn't necessarily feel awake even as my body went through the motions.
Usually, by 4 or 5 p.m., the cobwebs cleared and I was at my most productive, and I often worked till 10 or later at night. I didn't really mind, though I would've preferred to be home in the evenings--but my boss grew tired of it. And I knew it. And that only made things harder.
At last, after my (very obvious) ADHD was diagnosed and tied to sleep problems just like mine, I was started on Ritalin.
At first, I thought my problems were over. My honey would bring me a glass of water and I'd take the Ritalin a half hour before I wanted to get up. For a week or so, it worked like a charm. And then it didn't. I'd sleep right through the Ritalin. Oh, if I did manage to get up, my brain was awake much more than in the past and I performed better--but the problem was, lots of times my body just ignored the stimulant and kept on snoozing.
A local sleep specialist had found I had mild sleep apnea--5 or less apneas per hour per night, and my insurance would not pay for a CPAP (Continuous Positive Airway Pressure) machine--a sort of oxygen mask worn at night that blasts air, not pure oxygen, into your nose and down your throat past any obstructions. Or, if the problem is in the brain, the CPAP reminds the wearer to breathe.
I am not overweight, as are many folks who have sleep apnea, since the extra weight in the neck tends to close down the airway, but I do have major sinus problems that might create an obstruction. Yet I felt certain something is also happening in my brain. Unfortunately, I'd have to wait two more years of miserable, inadequate sleep to get any help, thanks to the wisdom (NOT) of the insurance companies.
After those two years with no improvement, I went to a new sleep specialist slightly out of town. On my test there, my apneas and hypopneas came at an average of 17 times per hour per night, and I was finally started on CPAP. Again, I thought the Holy Grail had been obtained. Now I'd certainly be able to get to work by 10 a.m.!
Again, WRONG.
After a week or so of improvement in that regard, the CPAP failed to help me get up for work. Oh, I slept better, but nothing seemed to stop the hypersomnolence.
That once fine-tuned internal wake-up mechanism in my brain had sprung its sprockets.
Thus, back to the sleep specialists for a Multiple Sleep Latency Test (MSLT). In that test, I was hooked up to all the same wires as before, but this time I was awakened numerous times through the night. Then I was forced to get up at 6 a.m., stay awake for two hours (theoretically), then down for a nap, then up again for two hours--this repeated several times until 4 in the afternoon.
I was told to stay awake during my naps, but I couldn't do it. I'd sit in the easy chair in my room, and my eyelids would feel as if weights had been attached to them. I couldn't resist closing them, or putting my head on the chair's or my own arm and fall asleep. The technician would wake me up, but within moments those eyelids were going down again.
The test showed that I have a sleep latency of four minutes--meaning I fell asleep after an average of four minutes awake. Anything under ten minutes is positive for hypersomnolence. I also started REM sleep very quickly at least once, maybe more--which can also be positive for narcolepsy. But I do not have narcoleptic sleep attacks nor cataplexy (a loss of muscle control due to strong emotion), both of which indicate would narcolepsy.
Thus, I was diagnosed with idiopathic hypersomnolence. I did not receive the additional diagnosis of Excessive Daytime Sleepiness (EDS)--yes, a true medical diagnosis--but I'm sure I have that, too.
Because, strangely enough, I tend to stay up all night. My usual schedule is about 12 hours sleeping during the day and 12 hours of awake time at night, though more often than not the sleep hours outnumber the awake hours. I've tried so many times to turn in earlier, but I just lie awake for hours. My fall-asleep switch is as messed up as my wake-up switch. In fact, in what I believe is a related issue, I'm finding it harder and harder to transition from one activity to the next, even when I want to stop what I'm doing and move on.
So, I hear you--get a night job, right?
Unfortunately, few of those exist out here in Appalachia. I don't have the guts to be a clerk in a night-time retail establishment--I've seen too many true crime shows about lone women in those establishments and the nut jobs who like to prey on them.
I wouldn't mind bartending, though, in one of the little family bars that dot the mountainside, but those jobs are hard to come by and are rarely advertised, so you have to be on the spot to know about a vacancy. Since I almost never go out anymore with friends--something I loved to do until this curse came over me--and my honey and I rarely go out, the chance of my finding a bartending job is slim. And, if the bar were at all busy, I'm sure I wouldn't have the energy to keep up anyway.
Besides, that's my usual schedule. But if I exert myself too much--say, walking around Wal-Mart (shudder--that's about the only place to shop around here) for an hour or so--I'll be down for twenty hours. And sometimes I'll sleep excess hours above the excessive ones I usually sleep just because. There's no rhyme or reason to it. Sometimes my body just wants to sleep, and nothing else. Period.
I really have no set time when I might be awake or asleep, and it's difficult to work when you have no regular schedule and have not been able to create one for years despite really, really trying.
When you can't be awake during regular business hours, all kinds of problems pop up.
For instance, I have several diagnosed chronic diseases, all of which require medications. But sometimes I'll go for weeks at a time without refilling my prescriptions because I can't get myself up during the hours the pharmacies are open.
I've missed so many doctors' and other appointments because I've slept through my alarms, or have tried--and failed--to wake up and get out of bed. And I hate missing appointments.
And now, half the time, I don't even know what day it is. When you sleep so much, days flow into one another without the usual signposts.
I haven't seen my son perform in his two bands for years because I'm sleeping or too tired to drive the 1.5 hours to see them, and that breaks my heart. I'm hoping to make it, finally, to his Halloween show next week, but I've disappointed him AND me so many times in the past.
And, as I've complained many times before, I rarely get to spend time outside in the woods--my favorite of all activities--because I'm almost always asleep when there is daylight.
I had to stop working this past March--my boss had put up with my wacky schedule for a long time but finally got fed up, even though I can write at any time of day or night and was very productive, bringing in millions of dollars in federal dollars with my grant writing (and, of course, with the collaboration of coworkers and others--but the writing was mostly mine), not to mention overseeing a medical library and implementing library projects in the community, AND overseeing the Web site. I was just about to re-vamp our site, something I was excited about doing, when the hatchet came.
Actually, during one of my sackcloth and ashes days six months or so before the falling of the ax, I'd gone into my boss's office and offered to resign. I hated to make her deal with my stupid sleep problems, and though she'd been supportive for three or more years, that last year I knew I was getting on her nerves. But then I told myself--and it was true, if I do say so myself--that I could get more productive--and lucrative--work done while feeling half asleep and while the rest of the office was home eating dinner than most humans in the pink of health could do, and I was determined to push on.
But my coworkers were tired of seeing me drag in there as if I'd spent the night partying to the hilt when, in fact, I'd been sleeping like a hypersomnolent baby and had had a hell of a time dragging myself out of bed and into my car to get there. They worried about me. My shortness of breath caused them to call an ambulance one day shortly before I was canned, and I was diagnosed with hypercapnia--a sign of de-oxygenation in the blood--by the EMTs.
And I've had polycythemia--another sign of de-oxygenation--since 2010, with no cause yet found despite going to Johns Hopkins for it. This is all connected, I know, and being deoxygenated is not good for the body's cells. No wonder they're frickin' tired.
Now that I don't have to work, it has been a huge relief to not have to worry about putting in my hours every week, but the flip side, of course, is a huge financial toll--not to mention the loss of self-esteem that comes from doing good and important work and the daily contact with friends I value dearly.
I applied for Social Security disability benefits on March 1, my first day of unemployment, and I have yet to hear back. "Hypersomnolence" is such a weird disease that I'm terrified I'll be denied.
And if I do get it, I still hope I'll be able to return to the workforce someday, if some miracle cure for this difficult-to-treat condition turns up, and I hope like hell it does.
I'm about to lose my house and ruin my credit all over again, which happened when I lost my teaching job due to my health problems. The credit, not the house--but the house is in miserable shape and needs major maintenance I can't afford, such as installing some kind of working heating system. We need heat in these cold, snowy mountains, but my oil tank is rotting through, my furnace is old and rusted, and even my wood/coal furnace is malfunctioning these days. I've spent a fortune heating the house with electricity, a fortune I simply do not have.
It's so frustrating to not be able to simply go out and go to work, something I've enjoyed doing since I got my first job as a pizza maker at age 15 for $1.40 an hour. I've always been a good, hard worker, earning top evaluations, merit raises, and wonderful recommendations from my employers, slowly working my way up the professional ladder. And now I'm not sure I have the stamina to clerk in a convenience store.
I'm only 55, a time when I should be in my career prime. And I would be if I could be. I loved my job, and I was good at it. The agency was flexible, my coworkers awesome, and I loved the work and felt great when one of my grant applications was funded.
Even more, I'd felt fulfilled as never before (and stressed as never before) while teaching. It broke my heart to lose my teaching job, one that I began preparing for at age 30 when I enrolled as a freshman at the Appalachian college in the town where I moved myself and my two sons after my parents died and I had a small inheritance with which to do whatever I wanted to do. I'd dreamed of teaching English since I was a kid, and I would still love to go back to it. But if teaching is too stressful, I'd still like to work in an office as I have for much of my life.
I don't want to be washed up. I don't want to be in poverty. I don't want my considerable professional skills to dry up due to disuse, and I want to continue helping my community with those skills. I don't want to be tired--or asleep--all the time and missing out on life--not only work, but pleasure, too. Time with my Honey, with my grown sons, with my dogs and cats and fish and newt, with the woods and the fields and the beauty surrounding me for which I moved from DC to the mountains.
I stay as active as I can when I am awake. I spend my time doing crafts and hoping to sell them at a local traditional arts store or on Etsy. I've sold a few, but not enough to keep my house. I've honed my baking skills at 4 a.m., and I'd love to work for a bakery on third shift, if I could find one hiring. And if my stamina allows me to handle the physical work of baking.
I've set a new goal of writing at least one page a day in some format--this blog, the memoirs I'm working on, the children's fairy story I'm writing--but even that is too much sometimes. For even when I'm awake, more times than not I'm extremely fatigued, and all I can manage is to lie on the couch and watch the tube, something I don't care for at all.
I don't want to sound as if I'm whining. I'm just trying to convey how difficult idiopathic hypersomnolence is. If you don't believe me, additional testimonials can be found at Living with Idiopathic Hypersomnia.
Having a strange and misunderstood disease such as hypersomnolence is lonely. It's scary. It's debilitating. It's financially crushing. It's embarrassing, though it shouldn't be. It's hard to convince anyone that you're not being lazy when you can't get out of bed.
Sure, I can think of worse ailments, more painful ailments. I'm so fortunate to have a Honey who sees me going through this and supports me emotionally, though he doesn't have the means to support me financially.
But hypersomnolence is taking away my life, night by night, day by day. I want my life back. I want myself back.
Unfortunately, that's not likely to happen. And sometimes--RARELY, but sometimes--I think it would be easier if I just didn't wake up at all. And for a person who's always been upbeat, this can be the hardest thing of all--to wake up after sleeping far too many hours and know that your day is going to be much as the last--non-productive, sleepy, with no progress made on finances or house or relationships or anything at all. Just a big Zzzzzzzzzzzzzzzzzzzzzzzzzzzzz.
Yet I like my life. I still have a lot to give, in those small increments of wakefulness.
But right now, all this writing has worn me out.
It's time for a snooze.
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| A typical day. |
Another term used is primary hypersomnolence; this means the problem is due to its own cute self and not something else going on in the body.
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| Another typical day. |
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| And, yes, yet another typical day. |
I was teaching college English at the time, entering my critical year--the year when one is "up" for tenure. Three months before I was asked to resign my job because of my health problems, I'd been told by the president of my college that I was a "shoo in" for tenure, despite medical problems that had already manifest by that time.
It's true--the sleepiness had begun to affect my job. My Chair in the English Department teased that I should attach some sort of electrical shocker to my body to help me get up when the alarm went off. I was having to take naps during the day in my office, something I'd never had to do before, and I was missing meetings because of it.
I did still give 100 percent of what energy I had to my students, however. I truly wanted to help their writing get better, as I believe writing is the key to unlocking academia and any professional life. Though there were some 100 of them, I knew each one and wanted each one to succeed--and I wasn't going to cheat them.
They hadn't named me "Most Unforgettable" (second only to the cafeteria lady!) in an impromptu student poll for nuthin'! Diminished as my energy was, though, other parts of the job began to slide as I fought to stay awake and focused . . . and alive.
But then I was admitted to the hospital for suspected heart failure based on other--but I'm quite sure related--symptoms just as the fall semester began. After my five days in intensive care and several invasive procedures, the docs decided they'd overmedicated me with hypertension meds and cut them back, then cut me loose.
What followed afterwards was a nightmare I will one day chronicle--but it's so bizarre I hesitate to bring it back to life in words, believe it or not, given how words tend to pour right out of me these days.
And so I lost my job because I couldn't teach the classes they'd scheduled me for as I lay in the hospital, my mind divvying up my worldly goods among my sons, my fiance, and my friends because my heart was failing. And apparently it is, slo-o-o-w-ly. Thank heaven for small favors, though actually every day I'm alive is a gift, as an acquaintance I met in India when still feeling relatively healthy in 1999 was fond of saying, and I must still agree, even as the days get tougher.
I was asked to resign in September 2008, which I refused to do, and I was terminated just as the subprime debt crisis rocked the financial markets and launched the recession we are still more or less in. (I maintain we're headed for a Much Bigger Fall, but that's another topic.) In Appalachia, jobs that could support me became virtually nonexistent. And I questioned whether I still had the energy and ability to take a job that could support me--or any job, for that matter.
After my release from the hospital, the hypersomnolence took over in earnest. Mostly what I did for those 13 months was sleep. I didn't get of bed except to pee (and even that disturbingly rarely) and perhaps heat up a bowl of soup.
When awake, but still in bed and groggy, I looked for work on the Internet and applied to jobs. Unfortunately, jobs are few and far between here in this depressed Appalachian area even in boom times everywhere else. In fact, Cumberland, Maryland, the nearest "city" to me, was recently named one of the top ten poorest cities (# 6) in the United States (Daily Finance at http://www.dailyfinance.com/photos/10-laredo-texas/). I put "city" in quotation marks because only 20,000 souls live in Cumberland proper.
The first thing one might suspect regarding my days in bed is that I was depressed. Lord knows doctors will jump to the psychological explanation right away for these mysterious diseases of the mind. Yes, I was depressed about losing my dream job for something completely out of my control--but that was situational depression, to be expected given the circumstances. Something more was clearly going on.
An Aside:
You might think it's illegal to fire someone because he or she is physically ill, and so did I. I filed an appeal and went through one hearing of three possible levels, but I didn't have the energy to deal with the paperwork and stress involved and no money at all with which to hire an attorney, and dropped my grievance. Yes, I was depressed that I'd been discarded like so much trash by my employers after giving my heart and soul to my job for six years. But the depression wasn't causing my sleepiness, as later tests would prove.But I remained hopeful in those sleep-filled days of unemployment, even as I feared the worst about my future--an oxymoron, true, but I fluctuated between extremes of hope and despair in those days, ultimately refusing to give up hope. When you ain't got nothin', you'd better hang onto hope like the life preserver it is.
Employers today have ways around these laws, among them the "employment at will" clause in one's employment contract. In my case, after being asked to resign, I received a letter saying I was "negligent" because I had not asked for a medical leave of absence during the semester that started a few days after I showed up at the Emergency Department with symptoms of heart attack and had been admitted and told I'd, indeed, probably had TWO heart attacks.
Gee, WVU--sorry I didn't have time to dash off a letter asking for a leave of absence in the midst of my heart's giving out on me.
Finally, I was rehired by my former employer, a non-profit health education agency where I'd worked as a grant writer, medical librarian, project coordinator, and Webmaster for five years before teaching. (It's a small place, so everyone wears a lot of hats). The terrible thing was I was hired to replace a dear friend who was dying of ovarian cancer, and that's a lousy way to get a job. Just one more reminder of how fast our lives can change. And end, often in terrible ways.
The leadership had turned over since I'd last worked at the agency, but my new boss was supportive even as I told her that I was battling some kind of sleep problem. I promised I'd be there by 10 each day and work till 6 or later.
I was certain I could do it. I believed I could make myself do it. I never would have promised otherwise. All my life, I've been able to make myself do stuff--difficult stuff. Even waking up.
Through my work years I'd had start times of 6:30 a.m. (as a Bob's Big Boy waitress for several years during and after high school), 8:00 a.m. (when teaching college English at a local high school), 8:30 a.m. (when working as an academic reference librarian and, earlier, as a senior secretary at a NASA contractor in Greenbelt, Maryland), and 9:00 a.m. (for most of the jobs I'd held). Certainly, adjusting my schedule to get up at 9 a.m. to start work at 10 would not be difficult.
I was thrilled to be working again, of course, especially so at the job I'd enjoyed most in my long, varied career--though teaching, I still feel, is my calling. Teaching is just a heck of a lot more stressful. This job, on the other hand, allowed me to flourish because my creativity was valued and useful--and brought in money.
But, wish and try as I might, I could not keep my promise to be at the office by 10 a.m. I'd set my alarm on my phone and and leave it across the room so I'd have to get up out of bed when it went off, which in the past had always worked.
Back in the good old days, once out of bed I could manage to stay awake. That's how I'd gotten through high school--I'd found an old-fashioned alarm clock loud enough to wake the dead. After using it for a while, my body would wake me up 30 seconds before it was due to ring. No matter how deeply I was sleeping, my internal alarm clock jarred me awake just before the devil's scream. I'd run across the room, heart pounding, to turn the alarm off before the god-awful sound blasted. And that adrenaline burst would keep me awake.Unfortunately, my phone doesn't have an alarm like that, and I don't know where I'd find a clock like the hellish beast that kept me from missing the bus to school. How I missed it when trying to get up for work. They just don't make things the way they used to!
Now, when my phone would beep at me from across the room, I'd stagger over, shut it off, and crawl right back into bed, all while pretty much still asleep. And I doubt even that old black-magic clock would work today, so stubborn is my body's determination to sleep.
So, no adrenaline rush from the terrifying alarm clock. And, perhaps exacerbating the issue, no adrenaline rush about being late to work, as much as I hated being late.
I felt like a failure, like I must be some lazy, pathetic person if I couldn't even make it to work by 10 a.m., or noon, or 2 p.m., or 3 some days. I had to face my shame and embarrassment, and the raised eyebrows of my coworkers, each day I straggled in hours after my supposed start time, but those just weren't enough to spur me, as awful (and they were awful!) as they were.
The will was there, believe me. I beat myself up constantly for oversleeping, apologized nonstop, swore I'd do better. But most mornings, if nothing special were planned, I just didn't get that extra little rush of adrenaline I needed to break through the coma-like hold sleep had on me.
Some days I couldn't get out of bed at all. Lots of days, actually. Sometimes lots of days in a row.
If I had a cold or if I'd exerted myself too much (which didn't take a lot), I could easily sleep for 16, 18, 20, even 24 hours at a clip. The sleep was so deep, I almost felt as if I were living two lives--the awake life, rarely, and the deep, subconscious, rich sleep of dreams. And I did dream. Bizarre but very, very realistic dreams that felt almost like real life. Just thinking about one of those dreams would put me right back to sleep.
When I was awake and out of bed, I stayed awake just fine. No sleep attacks as in narcolepsy. But I was tired, and my brain didn't necessarily feel awake even as my body went through the motions.
Usually, by 4 or 5 p.m., the cobwebs cleared and I was at my most productive, and I often worked till 10 or later at night. I didn't really mind, though I would've preferred to be home in the evenings--but my boss grew tired of it. And I knew it. And that only made things harder.
At last, after my (very obvious) ADHD was diagnosed and tied to sleep problems just like mine, I was started on Ritalin.
At first, I thought my problems were over. My honey would bring me a glass of water and I'd take the Ritalin a half hour before I wanted to get up. For a week or so, it worked like a charm. And then it didn't. I'd sleep right through the Ritalin. Oh, if I did manage to get up, my brain was awake much more than in the past and I performed better--but the problem was, lots of times my body just ignored the stimulant and kept on snoozing.
A local sleep specialist had found I had mild sleep apnea--5 or less apneas per hour per night, and my insurance would not pay for a CPAP (Continuous Positive Airway Pressure) machine--a sort of oxygen mask worn at night that blasts air, not pure oxygen, into your nose and down your throat past any obstructions. Or, if the problem is in the brain, the CPAP reminds the wearer to breathe.
I am not overweight, as are many folks who have sleep apnea, since the extra weight in the neck tends to close down the airway, but I do have major sinus problems that might create an obstruction. Yet I felt certain something is also happening in my brain. Unfortunately, I'd have to wait two more years of miserable, inadequate sleep to get any help, thanks to the wisdom (NOT) of the insurance companies.
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| CPAP--Sexy nightwear. (Not.) |
Again, WRONG.
After a week or so of improvement in that regard, the CPAP failed to help me get up for work. Oh, I slept better, but nothing seemed to stop the hypersomnolence.
That once fine-tuned internal wake-up mechanism in my brain had sprung its sprockets.
Thus, back to the sleep specialists for a Multiple Sleep Latency Test (MSLT). In that test, I was hooked up to all the same wires as before, but this time I was awakened numerous times through the night. Then I was forced to get up at 6 a.m., stay awake for two hours (theoretically), then down for a nap, then up again for two hours--this repeated several times until 4 in the afternoon.
I was told to stay awake during my naps, but I couldn't do it. I'd sit in the easy chair in my room, and my eyelids would feel as if weights had been attached to them. I couldn't resist closing them, or putting my head on the chair's or my own arm and fall asleep. The technician would wake me up, but within moments those eyelids were going down again.
The test showed that I have a sleep latency of four minutes--meaning I fell asleep after an average of four minutes awake. Anything under ten minutes is positive for hypersomnolence. I also started REM sleep very quickly at least once, maybe more--which can also be positive for narcolepsy. But I do not have narcoleptic sleep attacks nor cataplexy (a loss of muscle control due to strong emotion), both of which indicate would narcolepsy.
Thus, I was diagnosed with idiopathic hypersomnolence. I did not receive the additional diagnosis of Excessive Daytime Sleepiness (EDS)--yes, a true medical diagnosis--but I'm sure I have that, too.
Because, strangely enough, I tend to stay up all night. My usual schedule is about 12 hours sleeping during the day and 12 hours of awake time at night, though more often than not the sleep hours outnumber the awake hours. I've tried so many times to turn in earlier, but I just lie awake for hours. My fall-asleep switch is as messed up as my wake-up switch. In fact, in what I believe is a related issue, I'm finding it harder and harder to transition from one activity to the next, even when I want to stop what I'm doing and move on.
So, I hear you--get a night job, right?
Unfortunately, few of those exist out here in Appalachia. I don't have the guts to be a clerk in a night-time retail establishment--I've seen too many true crime shows about lone women in those establishments and the nut jobs who like to prey on them.
I wouldn't mind bartending, though, in one of the little family bars that dot the mountainside, but those jobs are hard to come by and are rarely advertised, so you have to be on the spot to know about a vacancy. Since I almost never go out anymore with friends--something I loved to do until this curse came over me--and my honey and I rarely go out, the chance of my finding a bartending job is slim. And, if the bar were at all busy, I'm sure I wouldn't have the energy to keep up anyway.
Besides, that's my usual schedule. But if I exert myself too much--say, walking around Wal-Mart (shudder--that's about the only place to shop around here) for an hour or so--I'll be down for twenty hours. And sometimes I'll sleep excess hours above the excessive ones I usually sleep just because. There's no rhyme or reason to it. Sometimes my body just wants to sleep, and nothing else. Period.
I really have no set time when I might be awake or asleep, and it's difficult to work when you have no regular schedule and have not been able to create one for years despite really, really trying.
When you can't be awake during regular business hours, all kinds of problems pop up.
For instance, I have several diagnosed chronic diseases, all of which require medications. But sometimes I'll go for weeks at a time without refilling my prescriptions because I can't get myself up during the hours the pharmacies are open.
I've missed so many doctors' and other appointments because I've slept through my alarms, or have tried--and failed--to wake up and get out of bed. And I hate missing appointments.
And now, half the time, I don't even know what day it is. When you sleep so much, days flow into one another without the usual signposts.
I haven't seen my son perform in his two bands for years because I'm sleeping or too tired to drive the 1.5 hours to see them, and that breaks my heart. I'm hoping to make it, finally, to his Halloween show next week, but I've disappointed him AND me so many times in the past.
And, as I've complained many times before, I rarely get to spend time outside in the woods--my favorite of all activities--because I'm almost always asleep when there is daylight.
I had to stop working this past March--my boss had put up with my wacky schedule for a long time but finally got fed up, even though I can write at any time of day or night and was very productive, bringing in millions of dollars in federal dollars with my grant writing (and, of course, with the collaboration of coworkers and others--but the writing was mostly mine), not to mention overseeing a medical library and implementing library projects in the community, AND overseeing the Web site. I was just about to re-vamp our site, something I was excited about doing, when the hatchet came.
Actually, during one of my sackcloth and ashes days six months or so before the falling of the ax, I'd gone into my boss's office and offered to resign. I hated to make her deal with my stupid sleep problems, and though she'd been supportive for three or more years, that last year I knew I was getting on her nerves. But then I told myself--and it was true, if I do say so myself--that I could get more productive--and lucrative--work done while feeling half asleep and while the rest of the office was home eating dinner than most humans in the pink of health could do, and I was determined to push on.
But my coworkers were tired of seeing me drag in there as if I'd spent the night partying to the hilt when, in fact, I'd been sleeping like a hypersomnolent baby and had had a hell of a time dragging myself out of bed and into my car to get there. They worried about me. My shortness of breath caused them to call an ambulance one day shortly before I was canned, and I was diagnosed with hypercapnia--a sign of de-oxygenation in the blood--by the EMTs.
And I've had polycythemia--another sign of de-oxygenation--since 2010, with no cause yet found despite going to Johns Hopkins for it. This is all connected, I know, and being deoxygenated is not good for the body's cells. No wonder they're frickin' tired.
Now that I don't have to work, it has been a huge relief to not have to worry about putting in my hours every week, but the flip side, of course, is a huge financial toll--not to mention the loss of self-esteem that comes from doing good and important work and the daily contact with friends I value dearly.
I applied for Social Security disability benefits on March 1, my first day of unemployment, and I have yet to hear back. "Hypersomnolence" is such a weird disease that I'm terrified I'll be denied.
And if I do get it, I still hope I'll be able to return to the workforce someday, if some miracle cure for this difficult-to-treat condition turns up, and I hope like hell it does.
I'm about to lose my house and ruin my credit all over again, which happened when I lost my teaching job due to my health problems. The credit, not the house--but the house is in miserable shape and needs major maintenance I can't afford, such as installing some kind of working heating system. We need heat in these cold, snowy mountains, but my oil tank is rotting through, my furnace is old and rusted, and even my wood/coal furnace is malfunctioning these days. I've spent a fortune heating the house with electricity, a fortune I simply do not have.
It's so frustrating to not be able to simply go out and go to work, something I've enjoyed doing since I got my first job as a pizza maker at age 15 for $1.40 an hour. I've always been a good, hard worker, earning top evaluations, merit raises, and wonderful recommendations from my employers, slowly working my way up the professional ladder. And now I'm not sure I have the stamina to clerk in a convenience store.
I'm only 55, a time when I should be in my career prime. And I would be if I could be. I loved my job, and I was good at it. The agency was flexible, my coworkers awesome, and I loved the work and felt great when one of my grant applications was funded.
Even more, I'd felt fulfilled as never before (and stressed as never before) while teaching. It broke my heart to lose my teaching job, one that I began preparing for at age 30 when I enrolled as a freshman at the Appalachian college in the town where I moved myself and my two sons after my parents died and I had a small inheritance with which to do whatever I wanted to do. I'd dreamed of teaching English since I was a kid, and I would still love to go back to it. But if teaching is too stressful, I'd still like to work in an office as I have for much of my life.
I don't want to be washed up. I don't want to be in poverty. I don't want my considerable professional skills to dry up due to disuse, and I want to continue helping my community with those skills. I don't want to be tired--or asleep--all the time and missing out on life--not only work, but pleasure, too. Time with my Honey, with my grown sons, with my dogs and cats and fish and newt, with the woods and the fields and the beauty surrounding me for which I moved from DC to the mountains.
I stay as active as I can when I am awake. I spend my time doing crafts and hoping to sell them at a local traditional arts store or on Etsy. I've sold a few, but not enough to keep my house. I've honed my baking skills at 4 a.m., and I'd love to work for a bakery on third shift, if I could find one hiring. And if my stamina allows me to handle the physical work of baking.
I've set a new goal of writing at least one page a day in some format--this blog, the memoirs I'm working on, the children's fairy story I'm writing--but even that is too much sometimes. For even when I'm awake, more times than not I'm extremely fatigued, and all I can manage is to lie on the couch and watch the tube, something I don't care for at all.
I don't want to sound as if I'm whining. I'm just trying to convey how difficult idiopathic hypersomnolence is. If you don't believe me, additional testimonials can be found at Living with Idiopathic Hypersomnia.
Having a strange and misunderstood disease such as hypersomnolence is lonely. It's scary. It's debilitating. It's financially crushing. It's embarrassing, though it shouldn't be. It's hard to convince anyone that you're not being lazy when you can't get out of bed.
Sure, I can think of worse ailments, more painful ailments. I'm so fortunate to have a Honey who sees me going through this and supports me emotionally, though he doesn't have the means to support me financially.
But hypersomnolence is taking away my life, night by night, day by day. I want my life back. I want myself back.
Unfortunately, that's not likely to happen. And sometimes--RARELY, but sometimes--I think it would be easier if I just didn't wake up at all. And for a person who's always been upbeat, this can be the hardest thing of all--to wake up after sleeping far too many hours and know that your day is going to be much as the last--non-productive, sleepy, with no progress made on finances or house or relationships or anything at all. Just a big Zzzzzzzzzzzzzzzzzzzzzzzzzzzzz.
Yet I like my life. I still have a lot to give, in those small increments of wakefulness.
But right now, all this writing has worn me out.
It's time for a snooze.
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