Addiction

I think I am ready to admit it now:  I'm an addict.

And if I knew of a twelve-step program that could help me, I would willingly seek out the next available meeting.

I'm addicted to sleep.

I'm not saying this to be funny, or to commiserate with other tired moms out there.  I know all of us would love to take a nap, or are tired from being woken up during the night one too many times.  But once I started thinking about my need for sleep like an addiction, it really fits.

To test my theory, I copied, pasted, and edited the ten warning signs of alcoholism:

Do you ever sleep after telling yourself you won't?
All the time.  I always start the day with the best of intentions, telling myself I won't lay down to take a nap, but sooner or later I do.

Does your sleeping worry your family?
Oh yeah!

 

Do you sleep when you feel angry or sad?

Sleeping is my main form of escape.  If I'm angry, but especially if I'm sad, I curl up under the covers and go to sleep.

 

Have you ever felt you should cut down on your sleeping?

Every day that I am home from work or it's the weekend and I have the opportunity to sleep, I do.  I feel I should cut down on my sleeping every day.

 

Do you get headaches or have hang-overs after sleeping?

Not really.  Finally, one question I can say no to!  Though I do often wake up with my kidneys hurting so much because I was too tired to get out of bed and pee.

 

Does your sleeping ever make you late for work?

Yes.  I can convince myself of anything in order to hit the snooze alarm or reset the alarm so I can sleep just a little bit more. 

 

Have people annoyed you by criticizing your sleeping?

Some of the biggest fights DH and I have had are about my sleeping.

 

Have you ever felt bad or guilty about your sleeping?

Every day.

Do you ever forget what you did while you were sleeping?
Obviously not.  Woohoo, another question I can say no to.  That makes two!  However I do almost always forget about everything I have planned when trying to get more sleep. And I do forget everything that I promise the kids or DH in order to be able to sleep for five more minutes. 

 

Have you ever gone to sleep first thing in the morning to steady your nerves or get rid of a hangover? Not to "steady (my) nerves or get rid of a hangover" but I often go back to sleep first thing in the morning.  Sometimes I wake up, stretch, and then just go back to sleep, and sometimes I get myself a bowl of cereal first before I go back to sleep.

There.  I've answered every question.  And I return to the original website to check out what my responses mean with a feeling of dread, and my fears are confirmed when I read, "If you answer even one of these questions with a 'yes,' you may be an alcoholic."  Or, in my case, a sleep addict.

And just like a food addict who struggles because food is one of those things you can't live without, I can't go cold turkey to break my addiction to sleep.  But sheer will power is not cutting it.

I don't know what to do about this.  I thought when I got diagnosed with Narcolepsy so many years ago I would be able to stay awake and alert for longer periods of time, but it's just not happening.  But I do know that admitting the problem is the first step in solving it, so that's what I'm doing:

I am Miss Mommy, and I am addicted to sleep.

At Least It Wasn't Raining

Thanks to my incredible friend MemeGRL, I was able to complete yet another really, really long paper the other day.  You see, she was one of the many people (alright, she was probably the only one) who read my post in which I droned on and on (but in a funny, light-hearted way - really, you should go read it now) about how hard it is to stay focused on completing all the papers I must write in order to make my teaching certificate active again, and then she offered her house as a place for me to go and do work.  She works from home some of the time now, so we agreed upon a day that would work for both of us.

It was great.  I got to be somewhat social (okay, that always reminds me of The Breakfast Club: "So it's sorta social, demented and sad, but social."  Anybody?), catch up a little with a great friend, AND accomplish so much! 

I was so tired as I worked (as I so often am), so I knew if I had been home I would have probably laid down to nap and unintentionally wasted the entire day.  I got home around 2:40, my eyelids still heavy, so I decided I would allow myself a short nap.  I set an alarm clock for 3:10 and put it away from the side of my bed so I would be forced to get out of bed to turn it off.  And then I fell asleep.

The next thing I know, I am vaguely aware of the sound of the phone ringing and a pounding on the door.  I look at the clock which now somehow reads 3:51.  The pounding on the door is the kids who have been trying to get in for the last ten minutes.

I run downstairs, unlock and open the door, and find all three kids sitting in front of the door along with a worried looking boy from the next street over.  Twin B is sitting in a chair reading, Twin A is sorting the mail into piles on the ground, and The Princess immediately begins talking excitedly.

"What happened?!!  We've been banging on the door for so long!  Miss M (our next-door-neighbor) let us call you, but you never answered." 

[I later discovered Miss M even went so far as to call DH on his cell phone to let him know what was happening.  Luckily just as the call went through, I opened the door.]

"F and her mom (neighbors from across the street) came over and Twin A used her SmartPhone to call you again, but you know Twin A!  He became obsessed with the phone and wouldn't give it back." 

[It's true.  People with Asperger's usually have an intense area of interest, and for Twin A, it's all electronics.  We are just hoping he will grow up to become the CEO of some amazing new software company and take care of us in our old age.]

"We were soooo worried.  What happened?!!!!"

Of course, all through her dramatic diatribe, the boys are both bringing their stuff in and sharing various non sequiters about whatever flashes through their minds, so it is hard to focus on The Princess anyway, but my head was spinning as I tried to figure out what was going on.

The truth is, I have no idea what happened.  Me, the person who never rarely goes into a deep sleep at night, the person who even has medication she is supposed to be taking to force her body to go into more deep sleep - I must have fallen asleep and gone into such a deep, deep sleep I didn't hear anything at all.

I am completely mortified that not only did I sleep through my alarm, I slept through the kids pounding on the door AND more than one neighbor calling me to wake me up.  I am mortified that I left my kids out there while I slept.

And I know this was my wake up call to get this whole Narcolepsy thing under control.  Which means going to bed consistently at a decent hour.  And taking that stupid Xyrem to really sleep and not wake up twenty thousand times a night.  And getting up by seven every day.  And losing this weight I've been carrying around.

On a related note, did you see what I did up there when I wrote "wake up call"?  I figure as long as I can make myself laugh, it's okay.

Life is Hard

Narcolepsy sucks.

Depression sucks

The two together?  Really, really, really suck.




This is actually the post I was going to write yesterday, but I never actually got around to it, mainly due to the two things stated above.









Hmm....wonder what kind of weird searches will bring people to this post now that I have written that "s" word three times. 

To anyone who arrived at this post because of some strange phrase you typed into google:

Feel free to look around, but know this is NOT that kind of blog.

Tonight's The Night

Now I've got that song* stuck in my head, battling with the Beatles' music being piped in through the overhead speakers at the Starbucks where I sit and type on my laptop. 

As my previous posts have demonstrated, I am unable to sit at home and type on my laptop because the fatigue will quickly overtake me, convincing me of the absolute and unquestioning necessity to put my head down on the closest semi-soft surface in order to shut my eyes for "just a few minutes" which will soon become anywhere between three to six hours.  At least if I'm typing somewhere that is in public I will not attempt to take a nap.  In theory.

Tonight is the night that I try the big meds, the heavy duty sleep drugs that are too special to simply buy at my local Rite Aid but must be mailed via Fed Ex and require me to read important directions and instructions AND talk with a special nurse before I even attempt to use.  I tried it for about a week once before and it worked really well.  And then the Princess came to me in the middle of the night with a bad dream and I could barely wake up to help her.  I remember feeling like I was swimming through corn syrup to rise up to the surface in order to actually talk to her.  I decided then and there that I could NOT take any other medication like that until the kids were older.

And then I found myself out of work, home alone while everyone else in the family went to school.  And despite large to-do lists, I found myself sleeping for more hours than I was awake.  And even when I'm awake I feel like I could fall back asleep given half a chance.  I can't keep going on like this.  My doctor was willing to double the amount of daytime meds I take to see if that would help me stay awake and alert, but even that was not enough.  I don't see I really have a choice.  DH agreed to be the go-to night-time parent (if necessary) so tonight I begin the meds again.

Tonight, after I mix up enough meds for two doses and am completely ready to fall asleep, I will take the first dose.  Two hours later my alarm clock will wake me up enough for me to take the second dose. 

I know, it sounds crazy, but remembering the goal is to get me to fall asleep and get into a deep, deep sleep, apparently this is what does the trick. 
  

But that is not all.  ("Oh, no, that is not all."  Anyone else get that Cat in the Hat reference?  Anyone?  Anyone?  Bueller?  Bueller?)

Tonight I will also hook up my brand new fancy-schmancy heart monitor that I will then wear for the next three weeks.  I have to wait until a little before 8:00 to hook it all up since that is when the person from the monitor company is going to call me and ensure that I hooked it up correctly and turn it on (it's wireless) and test it out.  We are trying to get to the bottom of this whole extra heart beat thingy I seem to be having more and more often.  The echocardiogram was clear, so we're pretty confident it's not something medically scary, but we still need to figure out the cause.

So tonight is a big night.  I'm actually kind of excited to be moving forward on both of these issues, excited to see if the new drugs help me actually feel like I slept all night when I wake up in the morning, excited to see if the new heart monitor actually ends up recording what feels like an extra, sudden, forceful, out-of-the-blue heart beat that actually makes me simultaneously jump and gasp in surprise each and every time it happens. 

It's a big night.



* So the song I had in mind I thought was called "Tonight's the Night" but I couldn't reallly remember much more than that phrase.  I tried googling it to jog my memory of some more of the lyrics.  Do you have any IDEA how many songs have this phrase in it?!!  It took half-way through this post before I remembered that the chorus was kind of more like "Tonight, tonight, tonight, wo-oh, gonna make it right, tonight, tonight, tonight...." so I searched those lyrics only to finally discover the actual song.  I feel much better to figure out the actual song that will now be stuck in my head for the rest of the day.

Dear Narcolepsy

Dear Narcolepsy,
You suck!  I have to figure out a way to not give in to your seductive ways.  I start the day so good - today I even got up BEFORE my alarm clock (because the Princess' fan fell over and made her scream).  I ate breakfast, got dressed, was downstairs before the kids came down, kept them focused through their morning routine, even created a hair wrap in The Princess' hair (I know, I had no idea how to do that either, especially on her short, extra-fine hair, but I looked it up on-line and did the best I could) since I she had begged me for it for the last two days.  Apparently I CAN do anything.  I convinced Twin B that he would survive in school today despite being "up all night with the sniffles," though he did warn me that if he fell asleep in school, it would be my fault.  I told him I could live with that.  I managed to get all three out the door, all with clean faces, brushed teeth, school bags AND lunches.  Heck, I even remembered to check to make sure Twin A was wearing underwear (something he often forgets to put on).  I was alert, awake, on the ball.

Except, I wasn't.  Before I started being actively involved in creating a thing of beauty in the Princess' hair, I was wondering if I could go back to bed and squeeze in a nap before they had to leave.  You were already putting the seeds into my head.

And when they left, you forced that overwhelming fatigue through my body.  I went upstairs to take my meds and you convinced me that I could take a "short nap" which would leave me refreshed and ready to take on the world.  You LIE!  And you get me with the same lie every single time!  Why do I always think this time will be different?

I fell asleep hard and woke up from my alarm still ensconsed in my dream.  Despite the fact my alarm clock was out in the hallway, I still got out of bed, picked it up, reset it for another thirty minutes, and dove back into bed to finish the dream.  And I repeated that same scenario over and over and over again.  And I finally left my room at 12:30 this afternoon. 

N, this has to stop.  I threw away four hours of my day.  I have so much to do, so much I COULD do, and I'm letting you take it all away.  And I'm still not feeling @#$% refreshed, like you promised me I would!

So I'll say it again: you suck!  Tomorrow is another day, I still have some time before the kids get home, blah, blah, blah.  This cannot happen again, you hear me!

Sincerely,
Me

Fresh Start

Now you just stay away from me
and think about what you've done!

Yesterday did not go as I planned what with that terrible pillow of mine forcing me to lay down and sleep for most of the day.  Bad pillow.  Bad! 

But today is a new day and even though just writing about my pillow is making me a little tired, I'm ignoring it. 

I was on a Narcolepsy Support Group board yesterday and someone had written an article comparing REM sleep to rude guests at a party.  You know, the ones who never want to leave.  It's important to show them who's boss!  Unless you make it absolutely clear that the party is over (or that sleep is done for the night) they will make a space for themselves on the couch and hang out all the next day.  I love the comparison, and it's a good one for me to think about.  I need to make sure my body understands that daytime = time to stay in the awake/alert stage.  I have opened  all the curtains to get lots of natural light and have a list of things to do and plans if I start wavering.  Normally I would just pack up all my stuff and head to Starbucks to do my work, but money is REALLY tight right now (a post for another day) so I'll need to save that for an emergency back up plan.

And so this is a short post for today so I can get right to work and try to make up for wasting so much time the other couple days, but please note that the time stamp indicates morning, not afternoon, thankyouverymuch. 

Sleep is a Drug

And it's really, really addictive.

I'm so pissed at myself.  It is almost 1:30 and I have wasted most of this day yet again.

I thought that as soon as the kids went back to school I would be able to get so much accomplished around here.  I have to complete twenty thousand continuing education hours (give or take) in order to reactivate my teaching certification.  I figured it wouldn't be easy, but there are a number of different on-line, self-paced cources I could push through, and I gave myself the goal of completing it all this month so I could begin subbing come October.  It might not be realistic, but I figured hey, the kids leave the house at 8:30 and don't come back until 3:30.  That gives me seven hours to work each day.  Even if I took a few breaks, did some stuff around the house, whatever, I would still have a good chunk of time to focus on the course work.



Not an actual picture of me sleeping
because really, how would I do that?!!



NOT IF I SLEEP UNTIL ONE O'CLOCK!!!!!

Yeah, I got up at 6:30.  I took a shower, got dressed, even made my bed.  I went downstairs and helped the kids complete all their morning routine while I also ate breakfast.  I even walked them to the bus stop and was all social with the other moms.  But as soon as I started walking back home, all I could think about was taking a little nap.  I tried fighting it.  I took my Narcolepsy medication (which, while not a stimulant, works to keep me in the awake/alert stage so I don't feel tired all the time), tried reading a book, but the siren call of my pillow became too much. 

My annoyingly loud alarm clock

I told myself the first lie:  I'll set my alarm and get up at 9:00.  A lot of people start their work day at 9.  And my annoyingly loud alarm clock start beeping and booping and whatever else it does from midway down the stairs, where I had thrown it to force myself to start walking downstairs to get it.  And then I told myself my second lie: It felt like I only just fell asleep.  I wouldn't be such a big deal if I set it for 9:30 and slept a little more.  And on, and on, and on, until now it is 1:30, I have TWO hours left, and I'm so mad at myself I could spit.  [Though I never really got that expression - why would I spit just because I'm mad?  And since I'm mad at myself, would I try spitting AT myself?  Hmmm.....]

The fifteen minutes I allotted myself are almost up, so I'll have to think about my plan for tomorrow and the rest of this month/year/whatever later.  I better come up with a good plan because while sleeping all day is great (and I could go back to sleep right now if I allowed myself to) I'm falling behind in everything I was hoping to accomplish!

And this is only my third day on my own! 

Chaos. What Else is New?

If I didn't live with chaos, I am not sure I would know what to do.

I have Narcolepsy.  The symptoms for me are EDS (Excessive Daytime Sleepiness) - common for oh so many of us moms, and Sleep Paralysis (usually feeling paralyzed while falling asleep).  For the longest time I thought it was just because I wasn't getting enough sleep, but it felt like no matter what I did I was always tired.  Not when I'm teaching, not when I'm interacting with people, but the moment that I'm alone or a semi-quiet moment at home?   ZZzzzzzzz....

The only way to officially diagnose Narcolepsy is to be tested in a sleep lab.  The first test is when the hook you up to all kinds of machines that record your sleep.  The second test is where you stay hooked up to all the same machines and they have you take four or five short naps about two hours apart over the course of the day.  This is called a "sleep latency test."

As the name suggests, the sleep latency test measures the amount of time it takes for a person to fall asleep. Because sleep latency periods are normally 10 minutes or longer, a latency period of 5 minutes or less is considered suggestive of narcolepsy.       For each of my four naps, I fell asleep within TWO minutes.  For the last two naps, I actually fell asleep in less than one minute.

If a person enters REM sleep either at the beginning or within a few minutes of sleep onset during at least two of the scheduled naps, this is also considered a positive indication of narcolepsy.    I entered REM sleep each time within two or three minutes.

Bottom line, if given the opportunity, I could sleep all day and then sleep all night.  I NEVER feel like I have gotten enough sleep.  Apparently, my sleep cycles are all wacky, so I'm waking many, many times during the night.  My doctor prescribed medicine that would help me enter into deeper sleep, however when I took it, I was not able to respond to the kids when they woke up and needed me.  It was like swimming up from the bottom of the ocean.  I would hear them saying my name, but from a great distance, and it took forever to rise to the surface and respond. 

I have another medicine that I take during the daytime to help me stay in the alert stage while I am awake.  That works great - so great, in fact, that it is very obvious to the people who know me when I have forgotten to take it that day.

My dilemma is waking up on time.

My Super Rolly Clock

I have a very cool, very loud clock.  It actually rolls away as it rings and you have to get out of bed to turn it off.  I thought that would help.  It doesn't.  I wake up enough to get the clock, and then I reset it for twenty more minutes or so and go back to sleep.  And since my REM sleep is messed up (the time when I'm dreaming), my dreams are so vivid and so compelling, I immediately fall back asleep into the dream I just left.  Until the alarm rings again and I do the same thing.  Eventually I realize either that I HAVE to get OR I end up oversleeping altogether.

Today was one of those oversleeping kind of days.  I woke up for real only to discover that not only did the kids miss their bus and I now had to drive them to school, it was already past the time I needed to be at my own school in order to set up and be ready for the day.  CHAOS!  I rushed the kids (not an easy thing to do with Autism and ADHD in the mix) to finish their morning routine while I threw on my own clothes, took my medicine, washed my face, got the kids their medicine, and then pushed everyone out the door, into the van, drove them to school, pushed them out the door, and rushed to my own school.

Clearly, something has to change.  I think I know the answer, though I'm afraid to suggest it.  I need to get The Princess in on the act.  She is always awake well before her alarm clock tells her she is allowed to get out of bed.  I believe I am going to put her in charge of getting me out of bed.  I am going to (gulp) give her permission to splash my face with cold water if she does not hear me get out of bed and go into the bathroom after my alarm is turned off.  She will be THRILLED to be allowed to do this, and it should be enough of a threat in my mind to help me fight off the need to go back into my dream each morning.

I just hope I don't end up drowning in the process.