"Is it Nap Time Yet?"

I've been working on another post for while but this one gets to be first because I had an epiphany yesterday. It's about a question that I either think or utter out loud at least a few times every single day. The question is "Is it nap time yet?" The epiphany was realizing that when this happens, it's because I've just been hit with a Sleep Attack.

Portrait of Jo by Gustave Courbet

If you don't know what I mean by Sleep Attacks, here's the run-down. They are a bi-product of Narcolepsy (and probably other disorders that cause Excessive Daytime Sleepiness) that are characterized by an almost uncontrollable need to sleep right. now. The difference between a Sleep Attack and Cataplexy is that a Cataplexy attack is totally uncontrollable, has very little warning, and results in loss of muscle control, sometimes completely.

At least for me and others I've talked to that get Sleep Attacks, we usually have some warning when they happen such as a sudden lack of visual and/or mental focus (often referred to as "brain fog"), increased forgetfulness, a "swimming" or heavy head, dizziness, droopy eyes, feeling cold, headaches, etc. Lots of the same things that happen to a healthy person when they are sleep deprived and stay awake longer than is wise.

Unlike Cataplexy, we can sometimes fight off a Sleep Attack by getting up and moving, munching on sugary or salty snacks, downing caffeinated drinks, or just suffering through, though these can lead to a worsening of symptoms. Also, because these happen so frequently to people with Narcolepsy you can probably imagine how it might effect a person's employment, daily activities, and overall health. Even working a desk job it's not always possible or easy to get up and move, grab a snack, or close our eyes for a few minutes to let it pass, and doing so can be disruptive for those of us that deal with it and others around us. Of course, medications such as prescriptions stimulants can help, but without effective medicine to help one sleep, a person can only run on stimulants for so long before they either lose their effectiveness or lead to a crash that can mean sleeping for days.

So if you're around me and hear this question pass my lips, now you might understand why. Not because I want to nap, but because I need to but I really am trying my best to stay awake and alert.

Connecting the Dots

If you read my first post, you might remember this infographic I shared at the end. Well in the next few posts I want to talk a little more about that, and how it pertains to my own life. Basically you're going to get a rundown of what these statistics actually mean for me, and I'll tell you a little about my life, if you're curious. Also, if you're an educator that works with adolescents, I'm hoping to give you some information that might help if you're noticing certain problems with students being overly tired and falling asleep in your classroom. So try to bear in mind as you read this that I'm not writing all this so you feel pity or sympathy for me, I writing to hopefully help others understand. Especially if you are a PWN or have PWN in your own lives.

To start off this post, I'm going to talk about pre-diagnosis, because that's basically where it all begins, and in the next one, I'll go over actually doing the testing and my reaction and such when I started treatment. That average of 10 years on the infographic means that the onset if symptoms typically occurs a full decade before a person with Narcolepsy finally has a doctor say "This is what's wrong" and they can hopefully start getting treatment that actually works. I think it's safe to say that's ten very long, frustrating years without answers not just for people with Narcolepsy (PWN) but for those that live with and love them.

 Many people with Narcolepsy say they remember symptoms starting around puberty, though many have said they remember some in early childhood, or after a traumatic event or even a head injury or vaccine (this has only been shown to happen to those that got certain flu shots in Europe during a one or two year span). For me, it was probably a few years after puberty that I really remember noticing problems, but that doesn't mean they weren't there. I was an early bloomer and was almost a head taller than all but one other student in my entire school by fifth grade, so I hit puberty around 11 but really started noticing problems around 7th or 8th grade.

I did not get diagnosed with Narcolepsy until I was 27. That's almost 15 years between symptoms and diagnosis. 15 years during which I believed that I was literally one of the laziest people on the planet. 15 years of turmoil, of beating myself up, of overemotional meltdowns, of thinking I was a horrible friend, daughter, wife and mother. 15 years where I battled with depression and occasionally suicidal thoughts. 15 years of uncontrollable eating habits and sugar cravings. There were so many things, a lot of them that probably seem simple and even trivial to a lot of people, that I would torture myself about because I simply did not have the energy to accomplish them. Things like cooking and preparing healthy food, making my bed, brushing my teeth, playing with my kids, having a meaningful conversation, basic housecleaning, running errands. and the list just goes on and on.

Courtesy of everythingnarcolepsy.blogspot,com

When I was about 24 or 25 I had a neighbor suggest I talk to my doctor to see if I had ADD/ADHD because she could tell that something was not right, that it was difficult for me to stay focused on anything for very long. Sure enough, when I went to my doctor and I did all those evaluation questionnaires they use, I tested pretty high for ADD. I've also been diagnosed and treated for depression. I've wondered if I was bipolar, and my brother has wondered if he had Schizophrenia. If you read the first post, you know that hallucinations and Excessive Daytime Sleepiness can explain a lot of this. Schizophrenic hallucinations are different, though certainly no less frightening. Though he has it as well, he had never learned enough about Narcolepsy to realize it also came with hallucinations. (I'll probably get into the family dynamics and who has what diagnosis another day. It's too complicated to do that now.)

Found on CafePress

If you want to know more about how sleepiness/ sleep deprivation affects a person, check out this infographic and article from The Huffington Post or this one from Mic.com. I found the second one especially fascinating, as it explains the lack of focus, inattention, hallucinations and more from a neurological point of view, and I find brains incredibly interesting. And not just because I feel like a zombie most days.

found on thefunnybeaver.com

Of course, the medications I was prescribed didn't really work, not long term and certainly didn't address the real problem. I was still overemotional, irritable, impulsive, sometimes even delusional, and exhausted all the time. There were many conversations and events I could swear had actually happened, could even recount almost word for word and in perfect detail but no one else ever remembered them. I wondered if I was crazy. Like put me in an institution crazy. I would lose my temper at pretty inconsequential things and had no idea why. Twice I have broken a couple of my fingers because I got so mad that I punched the wall of our house and hit either a group of wooden supports or bricks. I still have no idea what I was mad about at the time but I do know it was something stupid. I'm sure you've all seen how irrational and inconsolable a two year old who missed their nap can be. That was me, but as a teenager and a grown woman. I knew I was tired a lot but I simply didn't have knowledge and the mental faculties to process that my every day, constant tired was so much worse than anyone else's every day tired.

I've tried exercise because I have heard more than once that you had to use energy to get energy. It does help, but without effective treatment I always struggle to make it a regular part of my life. How could I use energy to gain more when I have so little to begin with? For those of you who know enough about cars, it's like relying on an alternator to recharge your car battery when the battery is completely dead. Without at least a little bit of power to start the car the alternator is a basically a useless hunk of metal. That is how I feel a lot of days. Like a car without enough power to start, much less run long enough to recharge my battery.

My life went on like this for almost 15 very long years. Finally, in the Summer of 2005, some of my extended family came to visit. After about half an hour of watching me struggle just to get through a conversation, my aunt sat started telling about the problems my cousins had been having in school. How my youngest cousin, who I think was in third or fourth grade at the time, would fall asleep in the middle of school nearly every day, sleep for about half an hour to an hour, then be perfectly fine for the rest of the day. My other cousin, who I've always known as being incredibly sweet and kind, had behavior problems in high school that had gotten pretty serious. After years of doctors, tests, behavioral assessments, changes in diet, and I have no idea how much else, they finally found an answer. If I remember correctly, my youngest cousin was the first to be diagnosed with Narcolepsy by a sleep specialist. (Who is an amazing doctor who actually has Narcolepsy himself.) My aunt, being the amazing mother that she is, researched the disorder, learning everything she could about it, and realized it might be the cause of the behavioral issues her other daughter had been exhibiting and get her in to be tested. Eventually, four of my five cousins and my uncle were all diagnosed and started treatment.

My aunt had learned enough about it from her research and living with four other PWN that she had a pretty good idea how the symptoms manifested, and she was fairly certain I had it too. At the time, I was about five months pregnant with my youngest, so I imagined testing would have been difficult, or even skewed by the fact, so I put off testing. Besides, being told I probably had Narcolepsy was terrifying. I didn't want to admit that my issues might be so bad that they actually added up to a neurological disorder! Who would?

There were three things that actually convinced me to get tested. One was pretty superficial, I'll admit, but one of my cousins had lost like 50 pounds after she had been diagnosed and started treatment. Even when I wasn't pregnant, I had almost always been 50-100 pounds overweight. Those uncontrollable eating habits and sugar cravings I mentioned earlier? Not a joke or an over exaggeration. I used to bake 4-6 dozen cookies and I would eat at least half of them myself. In one afternoon. This is one of the main reasons I don't bake any more. My aunt explained that actually getting good, restful sleep would help more than I knew, and that made sense to me. (The infographics linked above from HuffingtonPost and Mic.com explain the science behind this more in depth.)

The second thing that convinced me to get tested was this list of "You might have Narcolepsy if..." jokes. Far too many of them made me cry, and I still laugh at nearly all of them because they are so very true. I imagine for non-PWN or for anyone who has never lived with a PWN, they might not make a lot of sense or will just be weird. But I imagine most people, if you've read this far, either know me well enough to understand, or know/are another PWN who gets it.

Photo by Firesam

If those two weren't enough, the third happened on Christmas morning a few months after my youngest was born. I'd pretty much accepted that I definitely had sleep issues by that time, but the combination of new baby, plus staying up late wrapping presents and "waiting for Santa" meant I was beyond even my normal degree of tired. I was bent over picking something up from the floor with my big butt in the air and I thought I heard my brother-in-law quietly say something about my weight. I don't even know if he actually said anything at all and it was one of those stupid hallucination or if he did say something but it had nothing to do with me. But I flipped out, yelled something defensive, threw some random object at him (thankfully I missed), and burst into tears. My family was speechless. I was mortified because it only took about two seconds to realize all of it had been because I was beyond exhausted and I just snapped. Now I get that I really had no control over my actions, but that only makes it a little less embarrassing. On that fun note, I'm going to end this post, and will talk about getting actually diagnosed and go from there. (For those of you still reading and whom I haven't scared off with the craziness of my life!)

The Spectrum

Yesterday was World Autism Awareness Day and April is also Autism Awareness Month, so I thought I'd write a list of what it means to have children on the Autism Spectrum, from my own experiences and from talking to friends who also have children with Autism.

It's so much easier to adjust your own thinking to work with theirs, than the other way around. Not that you should ever give up teaching them coping and effective communication skills because the rest of the world won't be so willing to adapt.

The Big Bang Theory

Sarcasm is a useless skill. Unless you plan to hold up a Sarcasm sign every time you use it, and even then it's only effective a fraction of the time. I've found that it's easier (and actually better for communicating with everyone) if you just cut it out of your repertoire.

When they laugh, it can be one of the most joyous sounds in the world because it is born from pure, genuine delight and amusement. Fake laughing is as useless as sarcasm.

Surprises are a given. This goes for both good and bad surprises. Sometimes it's impossible to predict what will cause a meltdown. Things they enjoy, will eat, or will talk about on any given day can be just as unpredictable.

They are different, not broken. They typically cannot filter out sensory information to focus on what is important. This means they hear, see, feel, and smell everything, which often seems to overload their brains. I can't blame them for hating places Costco and Ikea on a Saturday.

When they think it's like their own brains move too quickly and process far too much for their mouths or their hands to keep up. That may be why they sometimes stutter, don't like writing assignments, and may only talk when they feel they have something important to say or struggle to talk at all.

They will blow your mind. I have been told countless times over the years by teachers, friends and family members that they are astounded by the information that my children absorb. They may look like they're not paying attention, but they soak it all in. My kids know more about the Legend of Zelda, Minecraft, Egypt, Disneyland, Legos, and cats than you would believe. Sometimes I think my kids know more about them than their own creators. Savant seems like too mild of a word.

Even as much as their teachers might marvel at their ability to absorb information, if you have children on the Autism Spectrum you will need to be their biggest advocate. Do research. Learn what's available. Be willing to ask difficult questions and push for what they need. Schools are required by law to accommodate for students with special needs in the least restrictive environment. This can mean different things for different kids and it is basically up to you to fight for their educational needs.

There is no known cause of Autism. Despite what you may have heard, no valid, repeatable, scientific studies have actually linked vaccines with Autism. Doctors are even able to test for Autism in infants before most vaccines are administered. According to the National Institute of Neurological Disorders and Stroke, doctors and researchers believe a combination of genetic and environmental factors are the most likely causes, and more research is still being done, and multiple genetic markers have been found to predispose certain individuals to Autism.

Courtesy of Securebinary.com

People with Autism may stand out, but that's not always a bad thing. Many famous actors, scientists, inventors, computer engineers, writers and artists, and a few characters from popular TV shows, have been diagnosed or are thought to have had Autism. Fox's Bones character, Dr. Temperance Brennan is one that is likely, though I'm not sure if the show's creators or the novel character on which the show is based ever confirmed this possibility. Every time I watch CBS's The Big Bang Theory, I can't get over how much Sheldon is like my oldest son. He has Asperger's Syndrome, a label that was taken out of the most recent versions of the Diagnostic and Statistical Manual of Mental Disorders and was basically dissolved into the umbrella of Autism Spectrum Disorders, but which I still use out of habit. Asperger's is commonly known as The Geek Syndrome because of its frequency among tech gurus, software developers and other fields that demand both creative and detailed thinking but don't necessarily require social skills. The name is pretty fitting because those with Asperger's have more of the social issues associated with Autism and typically less of the learning and physical delays and even have higher than average IQs.


Early diagnosis and intervention can be so important, but it's never too late. The daughter of a coworker didn't get a diagnosis until she was almost an adult. When she was young Autism was almost never diagnosed in girls unless the case was severe, and according to the UK's autism.org page, is diagnosed at least half as often in girls and women than in boys and men. Her daughter is now 28 still struggles to learn social cues and signals that one of my son's was taught through elementary school, but at least she's still learning and has access to resources that weren't available before.

Getting a diagnosis means much more than being able to put a label on the problem. It leads to greater understanding for parents, teachers and anyone that interacts with a person with Autism. It means finding support, whether that's information and resources like the Autism Society of America, Social Security, community services, support groups, and more.

One of "Those" Days

I'm going to preface this first post by say I'm not lazy, nor am I one of those supermoms that gives everything they have to their kids, including gives up sleep to make cute little bento box lunches and has a spotless house with healthy meals and snacks all prepared every day. You may think from the title of my blog that I'm going to talk about my day dreams and all the wonderful things I accomplish without a second thought. If that's the kind of blog you're looking for, good luck. I can probably recommend a few that get close. This one is great if you want to get super crafty or need organization, and this one is perfect if you want advice from an Integrated Nutrition Health Coach (who's also an amazing and wonderful human being). Well, unless you know me, then you know that's probably not true. I will probably talk a lot about sleep. I mean, a LOT. It's more than a little important to me and affects my life more than it might affect other people's lives because I have Narcolepsy.

Sleeping Princess by Victor Vasnetsov

 Last week I had one of those really difficult days where Narcolepsy was just kicking my a** and I decided that, rather than complain more than I already do to my loving, oh-so patient and understanding sister, it was time to find a better outlet. So, I turned to the magic and wonder of the internet to get it out of my system and put the crazy happenings of my life into words.

Back to my really bad day. If my jobs (yes, I have two, one at a college and the other at a high school) were more stressful or my Cataplexy was worse I'd probably have some serious issues. Not that the issues aren't there. Thankfully the computer lab where I work in the afternoon was unusually quiet, so I could spend more than a few hours doing literally nothing but staring at my computer and occasionally scrolling through Facebook or Pinterest. It was a challenge and literally exhausting to do that on Thursday. It was a challenge to keep my head from lolling to the side too much or to keep from sliding clear off my chair. I'm sure I lapsed into at least a few micro-sleeps, and I was so tired by the time I left work. I was having such a bad sleep attack that I cried the entire three mile drive to my son's school to pick him up, because it was insanely difficult to keep my eyes open.

If you're not familiar with Narcolepsy, or only know what the movies show you about this chronic disorder, let me see if I can give you a brief run down of what I've learned and what Narcolepsy means to me and those in my family that also have it. (Okay, so I know me and I doubt it will actually be brief but I'll try to add some pretty pictures to make it more interesting.) Narcolepsy is a neurological autoimmune disorder  meaning some mix up in our own bodies causes it. Basically our immune systems are programmed to attack and kill the neurotransmitters (called orexins or hypocretins) that regulate sleep and wakefulness cycles. According to the Narcolepsy Network the main symptoms are: Cataplexy, Excessive Daytime Sleepiness (EDS), Hypnogogic hallicinations and REM episodes during consciousness, micro-sleep/naps, and sleep paralysis.

CATAPLEXY

Cataplexy is what you see most in the media. It's the falling asleep where the person topples over, nods off, or drops things because they lose muscle control at seemingly random times for no apparent reason. Think Rowan Atkinson's character in the movie Rat Race or animals that pass out when they get startled. Anyone that actually has Cataplexy or a good sleep doctor will tell you it's a symptom of a bigger problem and usually brought on by emotional triggers (including emotional memories) though I think stress or mental strain seem to trigger them as well. I'm pretty sure Cataplexy was a big part of the reason I failed AP Biology in high school, before I was diagnosed. It's like we just can't handle any extra excitement or challenge when our focus and energy levels are already pushed to the limit. (It also didn't help that my teacher turned off the lights because he used slides every day.)

MICRO-SLEEPS

Micro-naps are similar to Cataplexy but affect the brain more than the body. It's those times when we're so tired our brains go into sleep mode for a beat, a few seconds, or even a few minutes, then we just wake up and keep on going. When this happens, we might not realize we've been asleep and may even keep performing menial, everyday tasks. Sleep attacks and micro-naps seem to go hand in hand, though sleep attacks are usually a more conscious realization that we desperately need to sleep. Right. Now. Micro-naps can happen if we don't listen to this message, or when our brains don't even bother sending those signals and just go directly into stand-by mode.

EXCESSIVE DAYTIME SLEEPINESS

Photo courtesy of Orphanjones

Excessive Daytime Sleepiness may seem self-explanatory, right? We're just extra tired? Well, this is the worst of my symptoms, usually the one that first manifests in people with Narcolepsy (PWN, a term that most prefer to Narcoleptics) and the one that's most noticeable to others. Unfortunately, because our society is always pushing people to work beyond their limits so nearly everyone says they're always tired, it's one that often gets overlooked. Before I was diagnosed I had no idea my "tired all the time" was any worse than anyone else's "tired all the time". But doctor's didn't label it "excessive" without good reason. I've read that an otherwise healthy person would need to go 48-72 hours without sleep to reach the same level of drowsiness that PWN experience on a daily basis. Literally every single day. Think about that the next time you pull an all-nighter writing a research paper or preparing that big presentation for work.

HYPNOGOGIC HALLUCINATIONS/ REM DURING CONSCIOUSNESS

I've always thought Hypnogogic Hallucinations and REM episodes during consciousness were the same thing, though I guess the distinction is whether the person is falling asleep/waking up, or just going about their day. These can be funny, terrifying, or just plain weird. It is literally our brains going into or staying in dream mode while we're conscious, or at least semi-conscious. This is not the same things as day-dreaming, where someone zones out for a bit and imagines some other place and time. We have no control over it and thus cannot "snap out of it". It's like an invasion of the dream world that overlaps, interacts or supersedes the world around us. Imagine you're hanging out with friends but you're getting a little sleepy, then suddenly you are both there and somewhere else. Suddenly you're talking to your friends and your Uncle Pete that's lives clear across the country and there really is no boundary between the two. Or worse, imagine waking up from a nightmare where a psycho killer is attacking your family, and even though you're awake, you still see the killer in your house, chopping your spouse into little bloody pieces while he/she is also sleeping quietly next to you. Sounds like a horror movie, right? Well, I doubt anyone ever said Narcolepsy was super cool. If it was, everyone would be doing it.

SLEEP PARALYSIS

The Nightmare, by Henry Fuseli 

Remember how I told you that those Hallucinations happen because people with Narcolepsy can be dreaming while they're partially or fully conscious? Well, Sleep Paralysis is another by-product of that. Normally when people go into REM sleep their bodies go into a state of temporary paralysis to keep from acting out their dreams. (Sleep walking basically occurs when a person's body doesn't do this.) Because of our screwed up sleep cycles, people with Narcolepsy can have episodes of Sleep Paralysis while they are partially or even fully conscious because they're also stuck in REM sleep. Thankfully, this is one symptoms I haven't really experienced too much, but I'm told it's terrifying. When it happens the person can't move at all; can't open their eyes, can't shift, and many have said they feel like they can't even breathe. This is why a lot of artists have depicted it like having a demon sitting on a person's chest, many of them with the demon's hands or claws covering the person's mouth or entire face. Sleep paralysis used to even be thought of as demon possession, which probably doesn't sound too crazy, right?

Now imagine having those Hynogogic Hallucinations and Sleep Paralysis at the same time. How many times have you woken from a nightmare, breathing hard, and sat up in your bed before looking around, gaining comfort that it was just a dream and you're safe in your own room? Now imagine that you woke up, and you know you're awake, but that you're also still dreaming that there are demons or ax murderers chasing you, and being completely paralyzed, are unable to get the same comfort because you can't even open your eyes. Have I freaked you out enough? I think so.

The extra "fun" part about Narcolepsy (note the sarcastic quotation marks) is that there is no cure. Treatments that exist vary, though it seems that a combination of behavioral modifications and medications being the most common. PWN that use medication often take both depressants to help induce deep sleep at night and stimulants to stay awake during the day. As you might expect after reading all this, Narcolepsy can make it difficult to hold a job, stay in school, maintain healthy relationships, drive or operate machinery, or do so many other things that most people probably take for granted. Narcolepsy gets misdiagnosed as depression, ADHD, insomnia, and more. We get called lazy, unreliable, irresponsible, uncaring, and more. A lot of us rely on sugar, caffeine, or more dangerous stimulants and barely get through a normal day. Obviously, some of us can function better than others and I know people with Narcolepsy that work 50+ hours a week, are married with kids and never seem to slow down. For the majority of us, it's not that we don't want to work, go out,  exercise, have fun, and be healthy, happy, productive members of society. We're just too damn tired. Literally all the time.

If you've gotten this far, congratulations! You win the prize of 1000 internets! But really, thanks for stopping by, reading or at least skimming through all this. I'll leave you with this little infographic if you need more to think about until next time.