No Nap Days
November 29, 2010

Some days are good, some days are bad, and some days are from hell.  The hell days are the days when a confluence of different factors–work schedule, errands, a toddler outgrowing his nap–make it so that I miss my own nap in the afternoons.  This is bad.

You might know that I’m not currently on any medicine for my narcolepsy.  Crazy?  Yes.  Stupid?  Yes.  But with the drugs available for treatment being classified as l3 or l4 drugs–making them questionable to risky to breast-feed with–I feel like the choice is clear.  I can endure exhaustion for a year so that my daughter can have the best start at life.  But even if the choice is clear, it doesn’t make it easy.

If I miss a nap, my risk for sleep attacks increase.  This means whenever I sit down to nurse or read a book to my son, I doze off.  And given Noah’s rash cream debacle–we’re still trying to scrub the Desitin out of his hair–it’s clear that CONSTANT VIGILANCE  is required.  It also means that driving gets dicier; I’ve been in one sleep-related crash before.  I don’t want to do it again.

My mood deteriorates.  I get cranky, impatient with insignificant things.  The brain fog makes it difficult to play creatively with my son or even to interact meaningfully with my infant.  Coffee helps, but we’ve all done the stimulant to patch over exhaustion thing in college.  It leaves you feeling jittery and fried, which is why I hated the Ritalin so much in high school.

There’s not really a solution to my no-nap days, except that at some point after Teagan turns a year old, I’ll wean her, and some sleep doctor will come to work and find me scratching pitifully at the glass front doors.

“Provigil…please…” I’ll rasp.

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Family Planning and the Narcoleptic
October 20, 2010

A couple weeks ago, my husband and I made the leap from thinking we were done having children to knowing we were done having children, thanks to a urologist and my husband’s unflappable temerity.  The means was largely my husband’s decision–many of the other officers he works with have done the same thing, plus the (small) fail rate for other forms of birth control was still too much of a risk for him, given how fertile we seem to be (four pregnancies in four years.)  Plus, a police officer and a would-be writer?  Maybe not able to support a family larger than four.

We’re both young.  We know that.  Even though life seems complete with our house and Josh’s career and our college educations and our two healthy babies, we know we’re young in the scheme of things.  But we’ve always done everything young: marriage, kids, home ownership…why not sterilization?

Anyway, Josh’s opinion and finances aside, the most important reason we’ve decided to limit our family is my narcolepsy.  On the spectrum of the disorder, I’m lucky.  I don’t have cataplexy for one thing, and, as long as I follow a napping and caffeine regimen, I can go unmedicated long enough to breast-feed my daughter, but as soon as she’s weaned, I’ll be racing to get that prescription.  Another child would mean another two or so years without medicine, taking in account pregnancy and a year-ish of breast-feeding.  And I don’t think I can do it.  It’s getting worse and I think it won’t be long before my nap and a cup of joe isn’t enough.

I know this all sounds faked or whiney or petty.  How can a nap be so important?  Hardly any parent, working otherwise, gets to catch up on sleep.  But if I don’t fight off that sleepiness, I’m a hazard to my kids.  It’s not safe to drive them (I’ve been in one sleep attack-related accident before), and it’s not safe to stay alone with them now that Noah can open doors and there’s a tiny infant to stomp on.

It’s hard to think this way, of myself as a hazard to my own children.  But the price is too high not to be realistic about my limitations.

Danger aside, there’s also the quality of time I spend with my children.  More days than I’d like to admit, I find myself encouraging Noah to color or read or do anything that involves us sitting because I’m too tired to move.  I use Teagan’s feedings as an excuse to slug on the couch, even though I know what Noah needs to be doing is running around in the last of the nice fall weather.  While I’m unmedicated, there are too many days when the babies only have half a mother: an exhausted, impatient half.

So we made the choice to stop.  I’m curious about other people.  Do/did you have a reason to limit your family size?  Because of a physical limitation?  An emotional one?  A financial one?

I’m such a bad blogger
January 12, 2010

A good friend of mine is taking the MSLT in a couple of days, and I thought, oh yeah, narcolepsy.  Didn’t I blog about that once?

I have a good excuse though, I promise.  In early November, I found out I was pregnant again and promptly fell asleep for twelve weeks.  Between the exhaustion, crazy hard semester, work, and a toddler whose intestines literally collapsed (no, I am not exaggerating,) the blog has kind of fell by the wayside.

Sorry.

But now I’m in the second trimester and can manage to stay awake past eight.  At least for a couple nights a week.  So here’s hoping you’ll hear from me more often.

Anyway, I remember seeing this article before the end of the year: http://www.tennessean.com/article/20091228/NEWS03/91228032/1002/NEWS01/Driver+suffered+medical+crisis+before+fatal+wreck+++++

And it got me thinking.  Employers aren’t allowed to discriminate based on medical history, but as a narcoleptic myself, I would never ever consider a job that was centered on driving, especially after my accident last year.  No matter what medicine you’re treating with, with a job as important as ambulance driving WHERE THE LIVES OF OTHERS ARE IN YOUR HANDS, why risk having a sleep attack?  I can’t speak for the epilepsy part, since I’m unfamiliar with that particular disorder and the restrictions it imposes, but I think it would be completely fair to say a narcoleptic should not have a driving or piloting job.

I know this sounds strong.  Maybe unsympathetic even–which, to be clear, I’m not saying this poor man deserved to die.  But the most common treatment for narcolepsy is amphetamines, and I know on my Ritalin bottle, it cautioned against driving and operating heavy machinery.

The only problem is, if narcoleptics weren’t allowed certain jobs, where would it end?  Can a person with cataplexy be trusted to care for small children?  Can a narcoleptic be a spinal surgeon and perform 12-hour surgeries?  A soldier?  A cop?

What do you think?

My Heart is Breaking…
September 13, 2009

I have a friend who posted a blog with the same name.  I can’t even remember what it was about now, only that as soon as I read the title, my heart broke along with hers.  Something about the present tense, maybe, or the ellipses, but it made the pain seem so much more lingering, something that was ongoing and wouldn’t heal for a long time.

I am going to give you a little scene.  My son and I are at our doctor’s, waiting for him to get his ears checked (he had an ear infection a few weeks ago.)  I sit down with him on the floor, pull out a toy from his diaper bag and begin playing with him.  I feel so tired and exhausted and I start running the nap-numbers like I always do: just one more hour until his nap, then I’ll nap with him and he’ll probably nap for a good two hours this afternoon since his morning nap was short and I wonder if I turn the AC down if he’ll sleep longer—

I jerk awake.  I don’t know how long I’ve been asleep, but Noah has crawled out of the empty waiting area and is gleefully crawling toward the patient’s rooms.  I run to scoop him up as my cheeks blush in shame.  What kind of mother am I?  What if this had happened and a kidnapper was in the room?  What if this had happened outside and he’d crawled into the street?  What if–?  What if–?

I wish I could say this is the first time something like this has happened.  But it’s not.  I routinely wake from a nap to find Noah crawling back onto the bed after God knows what adventures around the bedroom.  The last month, I’ve had some trouble carrying him because I’ve felt so physically weak.  Some days, I just lay on the floor and let him climb on me like a jungle gym, because I’m too tired to sit up.

And the worst-case scenario has finally happened.  I’ve fallen asleep while driving and woken up in a wrecked car.

I believe in God, but, like most humans, I am a pretty selfish person and most of my prayers revolve around things I want.  I ask for things.  Lots of things.  Sometimes they are good things, like please help people in Africa find clean water and please stop those awful people killing dolphins in The Cove.  Sometimes they are things I know God won’t answer with anything but a headshake–could you please stop ACOG from needlessly slandering homebirth, midwives and evidence-based medical care?  Could you please tell Kings of Leon that they’ve hurt our ears enough with Anthony Followill’s voice?

But after my wreck, my prayers have constantly been

Thank you

Thank you

Thank you

Because what if Noah had been in there with me?  What if, instead of a country ditch, I hit another person, another car, a child?  I’ve transformed into a sleepy girl into a near-murderer. 

Whenever I think of Noah being in the car when I doze off behind the wheel, I already hate myself.  I can already see myself at his bedside in the hospital, trying to explain to doctors why I was driving without medicine during the morning, which I’ve known for years to be my weakest part of the day.  I can’t forgive myself for the things that I could have done.

I tell you all this story so I can tell you this story: I have decided (with the help of my doctor) to try some medicine to manage my disorder.  This medicine is an L 4 rating, which means it is risky to use while breast-feeding.  This means that I must wean Noah after a year of nursing.

What can I say, other than my heart is breaking?  The doctor handed me the precription, I carried Noah out to the car and cried in the parking lot.  I’m not ready.  He’s not ready.  Nursing was one of the biggest challenges of my life, something that I fought tooth and nail for, and now I have to stop for this thing, this mutation in my DNA.  I picture my hypocretin-producing neurons taking naps in my brain, stumbling around drunk, and I want to hit them, bruise them until they wake up and do their job.

I cried off and on for the rest of the day, and made everyone around me miserable by being a maudlin mope-head.  When Noah nurses, I cradle the back of his head and twirl the little curls at the nape of his neck, asking myself if I can give it up. 

When you’re pregnant, this little being hijacks your life utterly.  No booze, no sushi, no sex (for me with Placenta Previa.)  After a while, you get used to it.  Even though you’re sweaty and fat and swollen and exhausted, it’s okay because they’re right there with you, swirling around in your womb, sleepy and content. 

You belong to each other as much as two human beings can belong to each other.

And when they’re born—it’s this intense magic.  They still need you almost just as much.  Those early days of cradling Noah to my skin, snuggling in the glider while he nursed for hours on end—they were delirium.  For the first time, I felt the fierce animal-feeling of protecting and nourishing my little nursling.  That love is so unreal and unlike anything words can relay.  Suffice it to say, that to me, mothering and nursing were and are very tied together.  It is millions of years of evolution that shouldn’t be denied.  And it is this intensely spiritual thing that has brought my entire family closer to God.

It must end now.  In my heart of hearts, I’m terrified that it will alter mine and Noah’s relationship somehow.  That suddenly I’ll just shrink into an ordinary woman, and he won’t be as securely attatched, and I’ll just be another lady who watches him, like Grammy or Aunt Ashley.  I know that A Mother Is Not Just a Breast, and every generation since the Twenties has managed just fine with mother-baby bonding on a non-breastfeedng basis, but I still can’t banish these fears.  I’ve never been a mother without breast-feeding.  Logically, I know it will be fine, and that a year is a damn good run for breast-feeding in our culture.  I also know that it might be a rough month, but that he won’t really miss it that much.  He’s too busy crawling, rolling, giggling, chasing, babbling to notice if he misses a feeding even now.  The fact that I’ll be in this mire of emotional pain while he’ll be occupied with other things make’s me a little sad.  He’s so grown up 😦

But what is parenting but watching your child need you less and less?  And while they thrill in the newfound independence, you are left holding the slack end of the tether, wondering how it flew by so fast.  How you finally managed to rearrange your identity and your Google calendar around the little guy, but they are running, not walking, down the road to separate from you.

What can I say other than my heart is breaking?

Dare we hope?
August 18, 2009

Jackie Millet left her home in Welles, Maine, at 7:30 a.m. She was worried that if her husband dies, she’ll lose his private supplemental health insurance, and will be left with Medicare.

“Medicare helps cover most of what I need done,” she said. “The supplemental helps to pay for my meds, and those are very expensive. I have narcolepsy, where I tend to fall asleep, so I need it to stay awake and without it I can’t function. I couldn’t be able to drive.”

Millet got to ask her question. “I take a lot of medications. I’ve had a lot of procedures,” Millet told the president. “How will Medicare, under the new proposal, help people who are going to need things like this?”

“In terms of savings for you, as a Medicare recipient, the biggest one is on prescription drugs,” President Obama replied, “because the prescription drug companies have already said that they would be willing to put up $80 billion in rebates for prescription drugs as part of a health care reform package.”

Millet would still have to pay out of pocket for her drugs, but, the president argued, it would be less than she’s paying now.

–“A Civil Discourse at Obama Health Care Forum,” Fred Thys, wbur.org

Since the debate over health care is still in the thorny wilds of none-one-is-sure-exactly-what-is-going-on, I thought this might be the perfect opportunity to examine what support narcoleptic (and other sleep-disturbed) Americans need and would get if this were a perfect world.  (I am anticipating that any reform would not result in any significant changes for most of us.)

And I make a point to say sleep-disturbed Americans because we have different needs than other citizens of the world.  For example, your average Berliner doesn’t worry about falling asleep while driving since he takes public transit (although you still wouldn’t want a sleep attack there, either.)  And your average Sherpa probably wouldn’t worry about falling asleep at a desk job.

What we have right now: Access to drugs–unavailable in generic form and so very expensive–and the “right” to adjust our work schedules to our sleep needs.  So if you’ve been properly diagnosed and can provide some sort of proof, you should be under the umbrella of the Americans with Disabilities Act, where the employer is legally required to accommodate your disorder, perhaps by granting extra breaks or longer lunches (that could include a nap.)

There are two big problems with the ADA protection.  1) Narcolepsy is extremely under-diagnosed.  Because of its comical portrayal in the media and the overall cataplexy/narcolepsy confusion, many people associate the disease with dramatic faints or falling asleep in your soup, and therefore are unfamiliar with the more common symptoms, such as EDS.  Not only are doctors failing to recognize it, but the narcoleptics themselves are unaware that they’re suffering from a subtler version of the funny disease they see on TV.  The undiagnosed narcoleptic may be in constant degrees of reprimand at their job, always in trouble for sleep-related behavior, and have no idea that they have an autoimmune disorder.  Simply put, the ADA protection for sleep disturbed people fails because so many of us don’t know we have a truly medical disease.  And without knowing that, how can we demand our rights?

2) Narcolepsy and other sleep disorders aren’t taken very seriously.  I still struggle with this issue in my life.  It is difficult to make someone understand how profound the effects of disturbed sleep are–and why you need to take a nap in the staff kitchen.  To someone with normal sleep patterns, the frequent need for naps and ambulation might seem at turns lazy and petulant.  But as any parent of a newborn knows, just a few days of disturbed sleep will impair your focus, mood and effectiveness.  (Imagine an entire lifetime of this!)  Employers are technically required to help you if you ask, but we all know that there are several ways employers can get around this.  The most common would be an overall unhelpful attitude on the part of the boss, contributing to a negative atmosphere where the narcoleptic feels guilty about their needs ( and perhaps putting a temporary strain on their colleagues while they take a nap break. )

I’ve never heard of this happening, but it certainly wouldn’t be difficult to imagine a scenario where a boss needs to lay off one worker.  The narcoleptic employee would make the most sense–but of course legally that could not stand.  So he invents a reason.  Maybe–this hits close to home for me–the employee gets fired for chronic lateness, caused by the narcolepsy.  Because they’re being fired for lateness and not narcolepsy, this is legal, even though the employee has about as much control over their waking as they do their sleep attacks.

What I’d love to see:

An initiative to properly and more thoroughly diagnose those with disorders.   This would necessitate that more doctors become familiar with the different disorders and that the required tests (such as a MSLT) could be provided without being a financial burden to the patient.

Drugs used to treat narcolepsy available in generic form.  This includes, but is not limited to: Provigil, Ritalin, Dexdrine and assorted antidepressants.

Workplace concessions to the physical needs of a tired employee.  Perhaps every workplace should have a semi-quiet, semi-dark nook or room with a couch, so that people can nap comfortably.  Perhaps businesses could adjust some of their operation norms: an insomniac could work from home at night, then sleep during the day.  (This obviously wouldn’t work for many jobs, but I feel confident that it would for many professional ones.)

These three things would help assure that sleep-disturbed individuals get the identification and support they need.  Will they ever happen?  Not for a long time.  But it never hurts to dream.


Welcome to Spare the Nod, a blog about parenting with a sleep disorder
August 11, 2009

One night when my son was a week old, he woke crying for the fourth time in two hours.  I hobbled out of bed, hunched over my c-section incision, picked him up out of his bassinet and took him to his nursery where I tried to change his diaper.  His screams echoed in the silent house—I could hear my husband tossing in his sleep at the noise.  After a week of recovering from surgery—with five days of prodromal labor before that—and a nightmare of attempted breast-feeding, I was exhausted.  I looked out the window at the inky black night and had the fleeting wish that Noah had never been born.

And then immediately was swarmed by guilt.  How could I think that?  After two heartbreaking miscarriages and a difficult pregnancy complete with bed-rest and hospital stays, how could I not be elated that this precious boy was here and safe?

I cuddled Noah close to my chest and sat down in the glider, where we both cried until we fell asleep.  The next day, I was determined to find some answers.  Because I was not just suffering from the baby blues, and I did not have any other symptoms of post-partum depression.  No—I had narcolepsy and was suffering from extreme sleep deprivation.  I’d gone from sleeping sixteen hours in a day to maybe three or four.  And because I was determined to breast-feed, medicines were not an option.  I would have to find ways to cope non-pharmaceutically.

I browsed the internet.  Endlessly.  Searching for anyone on any forum who’d had experience parenting with narcolepsy—or any sleep disorder.  The results were disappointing.  Narcoleptics don’t have a huge showing on the internet; we’re not a large group, and any time we have free to surf, we’re probably using to nap instead.  All I could find were a few thin resources on parenting children with sleeping problems and a handful of desperate forum posts from exhausted mothers.  Luckily for me, sleeping and breast-feeding got a lot easier and continue to get easier by the day, but there will be new hurdles.  Especially if a second tot comes along!

So here’s my solution: I’m going to blog about my own experiences as a narcoleptic mother.  I’m hoping anyone who has answers, experiences, opinions, information on this somewhat esoteric lifestyle will comment with their advice.  And I want anyone with any type of sleeping disorder—not just narcolepsy—to chime in.  So all you with insomnia, hypersomnia, shift-related disorders, sleep apnea, sleep-walking or even restless legs syndrome or night bruxism—please feel free to share, even if you’re not yet a parent.

In the meantime, I’m going to explore different topics and strategies as they come up.  Hopefully, even if it’s just by reminding us that we’re not alone, we can cobble together solutions to make the impossible a little easier.