This Is What A Sleep Study Looks Like

First off, I'm sorry.

I really, really, really want to be done writing about sleep.  It's all I've written about for the last six months (okay, this is only the third post in six months, but still...).

Sleep, however, continues to elude me.  Initially, the sleep doc decided against a sleep study because I don't exhibit any signs of sleep apnea or restless leg syndrome.  The thought was to not do an expensive test if there wasn't anything meriting it.  I can get behind that.  But after several months of behavioral approaches with very little improvement, it was decided a few weeks ago that I should be scheduled for a sleep study.  Plus, I do exhibit symptoms of periodic limb movement disorder (PLMB).

So here's what a sleep study looks like:

Okay, I should clarify.  This is what the beginning of a sleep study looks like.  Why am I smiling?  Well, there are a couple reasons:

1. This is ridiculous.  I knew I'd be "hooked up" to some shit, but come on.  How is anyone supposed to sleep at all with this get-up?

2.  If I didn't smile, I would cry.  I rolled into the sleep study last night at 9:30, the appointed time, barely able to keep my eyes open.  I've barely slept in a week.  My sleep vascillates between waves of: kinda-okay to downright-shitty.  I'm squarely in the latter phase.  One of the downfalls of this latter phase (there are many) is that I cry at almost anything.  I get, well, a touch emotional when I haven't slept well in weeks.

So here I am hooked up to 20 or so wires (each wire on my head required a massive amount of paste in my hair - I really regret not getting an after shot this morning), a tube in my nose, a monitor on my finger, two wires running to my legs.  I was told I would be video recorded for the night.  Isn't that reassuring?

Somewhere in all of this is the idea that you might actually sleep, and maybe some people do.  I tossed and turned until after 3am, dozing off briefly a few times but never actually settling into sleep.  I had to call Amy, my lovely sleep tech, in because first I was freezing, then I was sweating to death, then I had to use the bathroom (yeah, you know it was ridiculous).  After all that nonsense I finally slept for a little over two hours.

Did they get what they needed?  Will someone be able to tell me what the hell is going on after that spectacularly poor night of sleep?  I have no idea.

The optimist in me thought I would roll out of the sleep study, go home, get ready for work and proceed to have a "normal" day.  Both of my bosses took one look at me and said, "Why are you here?  Go home."  I resisted for a couple hours and then gave in.  A crappy night of sleep is my norm, but last night was something else entirely.  It felt like a strange performance gone wrong.

You're given all the parameters, the dos and don'ts and encouraged to move through your nighttime routine to hopefully attain what is a "normal" night of sleep for you.  Part of me thought, hey, I'm going to sleep in a quiet, completely dark room with no children waking me up... maybe I will get a good night of sleep!  But then I got there and there was no window in the room (this freaks me out), it was clearly a hospital room (was hoping for some homey touches), the bed was horrifically uncomfortable, I was being monitored and videotaped, a sleep tech could come in as necessary to adjust wires or request over the speaker that I change sleeping positions, and I was uber-wired and could barely move without tearing said wires off.

I felt like someone's science project, like a lab experiment gone wrong.  The entire situation was so bizarre; I had entered the level of exhaustion that left me with two options:

1. Smile (okay, maybe with a touch of delirium)

2. Cry

I hope that in 10-14 days I can tell you that this little experiment was worth it.  In the meantime, I'm going to bed.  

And Then There Was… Slightly More Efficient Sleep

That's about as good as it gets these days.

Truth: The last few weeks have been terrifically difficult.

When the good doc told me I would need to sleep deprive myself further--in order to sleep better--she wasn't kidding.  At the time, I wasn't thrilled to begin this sleep schedule a few days before Christmas.  I wanted to enjoy the holidays, not slog through them in a zombie haze.  However, with the way the holidays fell, I only had to work one day per week for two weeks.  This was a blessing.

I've been a functional insomniac for nearly six years.  Despite every doctor I've seen telling me things would get worse before they improved, I still scoffed at their words.  How much worse could it get?

Oh, friends.  It can get worse.

But let's start with the good news:  At my appointment last week, I had improved my "sleep efficiency" by a great enough percentage that the doc granted me a 15-minute increase to my sleep schedule.  This means I now get to crawl into bed each night at 11:15 as opposed to 11:30.  It may seem insignificant to you, but it took all I had not to burst into tears of joy when this was announced.

It is so difficult to not go to bed when you are beyond exhausted.  To put the kids to bed, look at the clock, and realize you still have, at a minimum, THREE MORE HOURS until you get to join them in slumber.  It feels horrifically unfair.  It goes against everything my body is shouting at me (You're tired! Go to sleep!  Why are you up?!?).

The dreaded daily sleep log - to track my sleep "efficiency."

What else is there to do, though?  I've tried it all, and now will try this.

And, by the way, the only reason my sleep efficiency has improved is because I am not allowed to go to bed or get up when I want to.  Pre-sleep schedule I was in bed for an average of 9 hours a night, only sleeping about 6.  Currently, I am allowed to be in bed for 7.25 hours per night, and am sleeping less than 6.

So I am actually getting less sleep now than I was when I began this treatment.  But it's more efficient.

It sounds terrible, and it is.

There have been days where I can't get behind the wheel.  I am so tired I don't trust my reaction time.  I tell Vinny to stop me if I try to leave, because 10 minutes after I decide I am in no shape to drive, I will have forgotten that I ever had that thought and will try to leave.

Yes, that's another really fun part of sleep deprivation.  I am suffering from a serious case of Can't Remember Shit (CRS).  I've experienced CRS in the past, most severely during my pregnancies.  But this is worse than that.  This is like having absolutely no short-term memory whatsoever.  Vinny vacillates between finding it hilarious, annoying, and concerning.  I think. It's hard to remember…

So all of this to say that progress is slow.  Yes, there is progress.  I cling to the tiny bits of progress because without them I would be even more of a crazy mess by now.

What is shifting?  Well, when I go to bed I fall asleep much faster, almost every night.  I stay asleep for longer stretches, sometimes until 5am.  This is major.  Sophie was sick for a stretch  after Christmas, waking me up each morning around 5:30, and that has continued to be an off-and-on trend, enough so that when she doesn't wake me up at that time my body decides to do it anyways.

I am getting, on average, about 5.5 hours of sleep per night right now.  It's not ideal, at all, but it is "better" sleep.

For the foreseeable future, I will continue to slog through my days in a zombie haze.  I apologize if we've spoken, hung out, emailed, or otherwise communicated in any way, and then I had absolutely no recall of it later.  I swear I am not ignoring you or failing to pay attention to what you say.  I am failing to remember it later, and it's frustrating, embarrassing, and, hopefully, not going to be an issue much longer.  I have so appreciated everyone's patience and kind words through this.  Thank you, thank you.

"You Need to Sleep Deprive Yourself"

Trust me, these are not the words an already sleep deprived person wants to hear (also, apologies… this is the most convoluted post I’ve ever shared—and I’m too tired to make it more sensible). 

For those of you that don’t know, I’ve been struggling with severe insomnia for nearly six years.  I was never a great sleeper to begin with, but when I became pregnant with Eli things went off the rails, never to return.

For awhile it was easy to justify: back-to-back pregnancies, a Sophie that wouldn’t sleep, a body that was out of whack once Sophie did finally begin to sleep.  It wasn’t until a year or so after Sophie started sleeping through the night that I truly began to wonder if I would ever sleep normally again.

There were many stages during this deepening awareness that, yes, I have a sleep disorder.  Frustration was the longest stage.  When you are so tired you can barely function and still cannot manage to stay asleep for longer than three hours at a stretch, well, it’s hard not to go bat-shit crazy.

These days, I am resigned to the whole thing.  When I finally caved earlier this year and asked my primary doctor for a prescribed sleep aid, it felt like total defeat.  I despise taking medications and figured it would do little to help me in the long run.

Four different prescriptions later I am taking a medication that does help the situation, a little.  After that initial visit, my primary care doctor was wise enough to schedule, without asking me, an appointment with a sleep specialist.  You know, cause there was a FOUR-MONTH wait to get in to see him and she figured I might find some use in it.  I shrugged, hoping the sleep meds would help enough to get me back on track so I could cancel the appointment before it rolled around.  Not sure where this optimism comes from... 

Four months later, the sleep specialist told me that staying on sleep aids forever wasn’t the best option, but I could do that if I wanted to.  Um, no.  After ruling out sleep apnea and a host of other sleep-related disorders, his next suggestion was to see a sleep psychologist.  I had no idea what this would entail.  His explanation: It’s going to be hard, and things will get worse for awhile, but nearly everyone has success going this route. 

Vague, but what the hell… I’m in.

To give you an idea of the timeline here, I went to see my primary care doctor in May, finally got the sleep aid I wanted (after having to guinea pig three others) in July, saw the sleep specialist in October, and had my first visit with the sleep psychologist at the beginning November.

Insurance snafus kept me from having my first follow-up appointment with the current doc for nearly two months, until this past Monday.

It’s a good thing I’m not exhausted and desperate for sleep.  Oh, wait…

So finally, this highly anticipated appointment rolls around. 

It takes all of 10 minutes and goes something like this:

Doc: From your sleep logs, it looks like on your best nights of sleep you get a little over six hours of sleep.

Me: That sounds about right.

Doc: But you’re often in bed for 9 or more hours.

Me: That sounds about right.

Doc: That’s a problem. 

Me: …

Doc: When you’re in bed that long and not asleep, and doing things like reading or drawing before you go to sleep, your body doesn’t associate your bed with sleeping.

Me: Okay. 

Doc: What time do you want to get up in the morning?

Me: Well, in a perfect world I’d never get out of bed before 8am.

Doc: No, you need to get up before your kids wake you up.  When would that be?

Me: Uh, I have two small kids.  There is no set wake-up time.  Right now it’s anywhere between 6:45 – 7:30, if I’m lucky.  Eli gets on jags where he wakes up before 6.

Doc: So, 6:30?

Me: I don’t want to get up at 6:30.

Now she’s getting visibly annoyed with me.  I shut it.

Doc: We need to figure out your wake-up time, so we can figure out your bedtime. 

Me: Okay.  If I wake up at 6:30?

Doc: Your bedtime would be 11:30.

Me: Oh… so 7:00 would make my bedtime-

Doc: Midnight.

I used to be a night owl.  Not anymore.  Most nights I’m in bed by 10:30, 11 at the latest.  I need to cash out in bed.  To rest, if not sleep.

Me: Well, I guess I’ll take the 6:30 wake-up.

Doc: Right now you rarely sleep for more than 6 hours per night.  So you shouldn’t be in bed much longer than that.  You need to sleep deprive yourself so your body knows that going to bed means sleep and nothing else.  You need to make yourself so tired that your body will learn to sleep during that time because it’s the only time it’s going to get.

DID THIS WOMAN JUST TELL ME TO MAKE MYSELF MORE TIRED?  What kind of operation was this?  Was there a hidden camera somewhere?  Were they trying to make me go off my rocker?  My deer-in-the-headlights look and lack of response must have signaled consent on my part, because she kept going.

Doc: It’s not going to be easy.  You’re going to feel worse for awhile.  But you’ve been sleep deprived for so long that it shouldn’t affect the way you function too much.  If it does, let me know.  But you should be fine.

Me: …

And that was pretty much the appointment.  I’ve waited seven months for someone to spell out something that feels, quite honestly, very basic, although very torture-like.

I came home equipped with more sleep logs, very specific instructions on what I MAY NOT DO in my bed, and both a sense of relief and dread.  Whenever there’s a plan, something else I can try, a new path, I feel relief because it means I haven’t actually tried everything and there is hope that things might improve.  However, this stay-up-late, don’t nap, and get-up-early plan was daunting.  I’m so tired already.  How was less rest going to help me?

I can’t tell you yet whether it’s helping me or not.  Now that my mind knows there is a schedule and I only have limited time to sleep, my nights have once again become quite restless.  Since my days start earlier and end later I feel like each day is its own marathon.  Around 4:30 in the afternoon, when I hit the worst slump of fatigue, all I can think is: Fuck!  I still have to be awake for SEVEN MORE HOURS.  How am I supposed to do that?  But then I do. 

And there’s this: Waking up before everyone in my house is really quite wonderful.  It would be even better if I could sneak downstairs and actually start my day without waking anyone (we live in an old, creaky-ass house, and although Eli could sleep through an air-horn in his room in the evening, in the morning hours he is the lightest little sleeper).  I have been instructed to get up IMMEDIATELY upon waking, so for now I’ve hauled my meditation cushion up to our room, and I’ll sit and catch up on news articles I wanted to read on my phone, dick around on Instagram, do yoga, meditate, and sometimes just sit in the quiet and listen to my family sleep. 

The doc was right that waking “on my own” (with an alarm, of course) versus being woken up by a needy little one would give my day a different start.  When Eli and/or Sophie stumble into our room I am ready and happy to greet them, instead of waving them off back to bed, grumbling about how I need more sleep.  If nothing else in this situation changes for the better, I am thankful for that little slice of improvement.

Where will I be in a couple weeks?  I have no idea, but I’ll keep you posted.  Also, for those of you suffering from insomnia I hope you find some useful advice in this post.  Maybe you can get this figured out much quicker than I have… waiting for medical advice you are desperate to receive isn’t a great feeling, to put it kindly.  I wish all of you many restful nights of slumber, and hope I can join you soon.

Tired of Tired

Seriously.  Whenever anyone in the last, oh, two years has asked me, “how are you doing?” the automatic response is, “I’m tired.”  At which point people nod along and say, “Well, you’re ________.”  (responses may include: pregnant, moving, solo-parenting, dealing with another newborn, the mom of two young kids, crazy)

Or, I’ll get a wary look.  A look of, “your baby isn’t a newborn anymore, get over it,” kind of look. 

Here’s the thing:  I am more tired now than I have ever been in my life.  Every cell in my body is screaming at me on a daily basis I am so fatigued. 

I don’t have time for this. I certainly don’t have the patience for it.  And for a long time, I simply tried to ignore it.  I figured that once Sophie slept better (and for the most part, she sleeps well now), I would somehow follow suit and begin to sleep through the night.  No dice.  Basically, since I became pregnant with Eli, I haven’t slept through a night.  Worse, I haven’t slept longer than a five-ish hour stretch.  That ain’t right.

Look, I don’t want to tell you I’m tired.  I know you don’t want to hear it.  No one wants to hear it, least of all me.  But I can’t avoid it.  It follows me through my days and nights.  I try to beat it.  I try to trick it.  I try to make myself so tired that there is no way humanly possible that I won’t sleep through the night.  And then I don’t.

It’s easy to say I have insomnia, and that wouldn’t be untrue.  But this thing, this tired thing, goes beyond that.  Sure, there are all the usual suspects that I’ve covered countless times in other blog posts.  But surely, most of those challenges have passed, so what gives?

I’ve been seeing an acupuncturist for several months now, for lots of reasons, one of which is: Make me feel like my old self.  Or at least a version of my former self. 

I had to laugh a few weeks back when Kristen, my acupuncturist, said to me, “You sure are an interesting little mix of things.”  I know she was referring to all the various, sometimes disparate things happening in my body that she is constantly trying to pinpoint, rein in, calm down, etc.  But I took it to heart, and wholeheartedly agree that in general, yes, I’m a mix.  Interesting?  Maybe.

Our talk continued beyond that, and although it was something she had brought up before, we hadn’t really talked in length about adrenal fatigue.  She says I have adrenal fatigue, without a doubt.  What is adrenal fatigue?  In its simplest explanation, it is the fatigue of your adrenal glands due to prolonged stress on your body (and this “stress” could be from any number of factors).  For more info, go here.

It’s also worth noting that Western medicine rarely, if ever, recognizes adrenal fatigue, rather attributing it to something naturalists have dreamed up to sell more supplements, etc.  This attitude is insulting on many levels, least of which is the habit of Western medicine to slap a convenient “diagnosis” on you and then prescribe some kind of bullshit medication for you to take the rest of your life.

But I digress.  It’s always a relief to finally figure out what is happening in your body, to have something to point to and say YES! that is exactly how I am feeling.  Of course this is quickly followed up with, “Well, now what?  What can I do to feel better?”

Most treatment for adrenal fatigue is practical advice along the lines of “getting a lot of rest, reducing stress in your life, simplifying your life, gentle exercise, supplements, healthy diet.”  Nothing too shocking, but somewhat laughable when you live in a household with two small children. 

The most important part of this treatment is diet.  So for the time being I am doing my absolute best to not eat: gluten, dairy, pork, most red meat, sugar, potatoes, corn, tomatoes (NOOOOOOO! This has honestly been one of the bigger challenges), and peanuts.  I have also had to swear off (again) Diet Coke.  People, you know this is my vice.  If I go out to eat Mexican food there damn well better be a fountain Coke to go with that meal.  These are the dilemmas I face, and I have to admit, it’s getting easier.

I’ll delve more into the dietary issues and the complications that arise in another post.

Beyond the changes in diet, my biggest “change” has been trying to cultivate consistent quiet and/or down time in the evenings.  As anyone with children can appreciate, the evening hours are my now-it’s-finally-quiet-I-can-get-shit-done time.  For the longest time I would spend every evening getting all the household stuff done, or working to check some other random task off my To-Do list. 

 

Most nights, all I really want to do is lay on the floor and stare at the ceiling (there may or may not be drool involved).  Or maybe I just want to watch a movie.  Or read a book.  Or go outside and simply sit.  It frustrates me that I have let myself get to a place where I feel guilty for relaxing, for taking a quiet moment for myself.  It’s tough to turn off that obnoxious little voice in my head that starts in, “You know… you really should be doing ________.” 

No, no I shouldn’t. 

So even though I have babes that certainly aren’t newborns, I have tried to revert back to some of the suggestions given during that time, namely: rest when they rest.  This was easy to do when I was sick and could barely move off the couch anyways, so naptime became my rest time, too.  In fact, getting sick and having it take four weeks to feel better has been the eye opener I needed to truly admit to myself: Your body is shutting down.  Stop ignoring it.

I’m only a few weeks into consciously “treating” my adrenal fatigue.  It’s daunting when you look at the recovery time associated with severe adrenal fatigue (18-24 months).  Despite this, I am so desperate to feel rested that I would do anything to move towards recovery, however long it may take.

So you’ve been warned.  I may give the annoying “I’m tired” response for a bit longer, but as soon as I feel even a little bit better I’m sure I’ll be coming up with all kinds of ridiculous things to say to you.  Aren’t you excited?