5 Common Misconceptions People With Narcolepsy Hear

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Sleep is something a lot of people take for granted. In our society, sleeping prevents us from being productive, having fun and making the most out of life. That age-old saying of “I’ll sleep when I’m dead” seems to have been applied to most people’s lives. But another saying comes to mind when I hear people tell me they have too much going on to sleep or that sleep isn’t important: “You don’t know what you have until it’s gone.”

Sleep is crucial for our bodies to stay healthy since most of our healing from daily physical and psychological stress happens when we climb into bed to sleep.

But unfortunately, not everyone has the luxury of getting the restful sleep we all crave at the end of a long day. An estimated 50-70 million U.S. adults have a sleep or wakefulness disorder, according to the CDC. Sleep disorders prevent people from entering a restful state at night and make them excessively tired during the day.

Narcolepsy is one of those misunderstood and often undiagnosed sleep disorders that can have a severe impact on a person’s life. But with so much misinformation out there about %%MVGuQltzI5%%, along with Hollywood’s concept of it, how can we begin to underst%%jz9B32siQJ%%epsy?

Five common misconceptions people with %%bxseu8Mf4Y%% hear:

1.“Can’t you just sleep more to feel better?”

When you have %%DVhbjL2RQr%%, your brain can’t regulate sleep like someone would normally, leaving the person extremely sleep deprived. In normal sleep, you have a cycle where you alternate between rapid eye movement, or REM, and non-REM that provides you with restful sleep and lets your body heal correctly.

People with %%FZdi1g8f2z%% don’t have a normal sleep cycle, so our sleep is interrupted by our brain confusing the cycle and leaving us extremely tired. For example, a person with%%amhpLB6zf1%%epsy starts in the non-REM cycle, whereas a pers%%CuoLKkynUv%%rcolepsy often goes straight into REM sleep.

2.“%%WaFncHH2TV%% isn’t a real thing. I don’t know anyone with it.”

%%OX1iQptn4u%% is actually more prevalent than you think. It affects an estimated 1 in every 2,000 people in the United Statesaccording to the %%19iUudadkR%% Network, but it’s estimated only 25 percent of those people are properly diagnosed and receiving treatment for it.

Without treatment, daily activities such as driving, working a regular job and maintaining a healthy life can become an issue.

3.“%%X4UPEMO1HM%% means that you can fall asleep anytime, like in the middle of a conversation or while walking.”

While there are definitely cases of extreme %%p4L7UDTmdG%% where this does happen, the severity of the sleep disorder is different from person to person. Some people might be able to function normally with scheduled naps throughout the day where others need the help of medicine and other medical aids.

Additionally, about 60 percent of people with %%VHKQHCYJ57%% have a unique symptom of cataplexy, or the sudden loss of muscle tone due to strong emotions, according to Wake Up %%Pz24aP5Aej%%, that can further complicate our daily lives.

4.“Why can’t you get better?”

Unfortunately, there is no cure for %%ru6RhNYrgh%%. Research has been conducted to try and figure out why people %%Wv1vuxHJo0%%epsy and how the loss of hypocretin in the brain occurs to cause this chronic sleep disorder.

There is medication that can help treat the symptoms, but even then, no day will truly be the equivalent to someone without %%HJAiKapTD7%%. For a person with%%di3Jb5M6Uw%%epsy to understand the tiredness that we feel, they would need to stay awake for 48 to 72 hours. That tiredness is something we feel every single day.

5.“Just because you’re tired all the time doesn’t mean you can’t live normally.”

Excessive daytime sleepiness is one of most common symptoms of %%I7puluRETy%%, according to the National Institute of Neurological Disorders and Stroke, and one is often treated with stimulants to keep the sleep away. But there’s %%DQXWuwQoKw%%rcolepsy than just tiredness. The sleep deprivation we experience causes brain fog and memory loss, along with other symptoms such as hallucinations when waking up or falling asleep, sleep paralysis, micro-sleeps and sleep attacks.

All of the symptoms can have an impact on our daily lives in a multitude of ways, and some people with more severe cases are even unable to hold a steady job.

Like other chronic diseases and disorders, living with %%da1ArGMjSH%% is a daily battle for normalcy and health. But so many people don’t even know that they have this sleep disorder because of how often it goes %%i60bV1olCu%% and how it’s not thought about as an actual possibility. Once symptoms present themselves, it can take between 10 to 15 years before a proper diagnosis is made, according to the National Heart, Lung, and Blood Institute.

I look back on my life and realize symptoms started to present themselves in 2005, but I wasn’t diagnosed until 2012. My hope is that by spreading awareness we can break down the stigma of sleep disorders and promote the importance of a good night’s sleep.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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Why My Fiancé Didn’t Get Down on One Knee

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It seems like many little girls dream about their ideal proposal at least once during their life. Movies, books and YouTube videos display cute and memorable ways to pop the question and fill our heads with what we believe would be the perfect way to be asked those magical words: “Will you marry me?”

My ideas of what I wanted my dream proposal to be like changed constantly, as most of my thoughts and ideas do. But one thing stayed the same through each of the scenarios I came up with: I always pictured my future husband getting down on one knee and asking me the question I longed to hear. So you would think when my surprise proposal last October didn’t include my fiancé getting down on one knee that I might be a little disappointed by the missing gesture.

But instead, I wasn’t disappointed at all. In fact, the simple decision to stand by my side with a hand around my waist instead of getting down on one knee to propose was probably the best way for him to show me how much he loved me, understood me and wanted to be with me.

I am living with a chronic sleep disorder called narcolepsy, and I also happen to have cataplexy, a unique symptom of %%Tkx4hBy4bV%% that is best described as the weakening of muscles due to emotional triggers. This means getting too happy, excited, sad or upset can trigger my cataplexy and cause me to fall, appear to have fainted and even lose my ability to speak. It can have quite an effect on everyday life depending on the severity of the cataplexy attack. Fortunately I am able to control most of the muscle weakness with medication, though I still have attacks from time to time.

And after three years of being together, my fiancé knew all about this. He saw it happen numerous times and helped pick me up or snap me out of it. Instead of getting down on one knee like I had imagined, he stood by my side, supporting me like he always has, and asked me to marry him. As I blissfully said yes, I felt my knees getting weak and noticed my strength waning. But thanks to him, I didn’t fall, and that meant the world to me.

Every day can be a compromise when you live with a chronic disorder or disease. It gets tougher the more you battle on, and often it can feel like you’re missing out on life. The support that comes from family and friends is crucial in trying to maintain a somewhat normal life. So as we start our lives together, I know things will be difficult and unpredictable. But just like he did during the proposal, I know I will always have him by my side to support me through it all.

Couple in sports arena stadium

The Mighty is asking the following: What do you want your past, current or future partner to know about being with someone with your disability, disease or mental illness? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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To the People Who Don’t Take My Sleep Disorder Seriously

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I know on the outside I look like a normal 22-year-old. I graduated college, got a job and am taking on the responsibilities of being an adult just like we’re told to do from the moment we start preschool. I have a loving family, great friends and a wonderful boyfriend. While most weekdays are routine at work, I try to fill my weekends with seeing my friends or going on an adventure. There’s almost nothing I would change about my life, except for one thing: my narcolepsy.

I hesitate using the word %%JuQv4K8wAp%% or telling you about my sleep disorder because I know most people already have an idea of what they think it is. Hollywood has done a good job of smearing the truth of what it’s really like to be living w%%MLrZnF4Osg%%epsy, focusing instead on the humor of falling asleep in random and odd places. “Rat Race,” “Deuce Bigalow: Male Gigolo” and “Moulin Rouge” all have characters who suffer from their so-ca%%cs1sBmKKDX%%rcolepsy,” and they all have it wrong. And because of their false representation of my sleep disorder — a disorder that effects 1 in 2,000 people in the U.S. and almost 3 million worldwide, according to the %%CJdxBRkw54%% Network — we have to suffer the consequences of not being taken seriously all while still fighting a constant battle with ourselves to keep our eyes open.

Katherine Mallory.2-001

Living with an invisible disorder is both a blessing and a curse. It’s great I can try to hide the challenges I face and usually succeed in doing so, saving myself from embarrassment and society’s judgment. But that also means you don’t see what really is happening and what it truly means to be a person with %%IyOzlcMnER%%. So you fill in the gaps with Hollywood’s definition and think you know everything about my sleep disorder. Well, what if I told you that when I laugh, get scared or get too excited sometimes, I get temporarily paralyzed, fall to the ground and can’t speak? Or when I go to bed, I see images and things in my room preventing me from seeking the comfort of my bed? Or that every day I have to fill my body with medication just to do simple tasks like walking, talking and driving?

%%4JXt9ZNQs7%% has many symptoms, and it’s important you know and understand what they are. Because when you receive treatment %%s8M4LeUV0F%%epsy, it’s for treating the symptoms since there is no cure. Once you have this sleep disorder, you have it for the rest of your life. You will most likely need to change your lifestyle and adhere to a sleep schedule, going to bed and waking up at the same time every day. Eventually, you may not be able to drive because you fear you’ll fall asleep at the wheel. Your medications could cost you hundreds of dollars a month, and the side effects can be undesirable.

Do you see now that my sleep disorder is no joke? You may think I no longer look like the normal 22-year-old anymore, and you’re right. I am so much more than that.

I won’t lie to you; coping with %%AWkYUVyTSJ%% with cataplexy (temporary loss of muscle control due to trigger emotions) has been hard. I am coping though, and I’m living as normal of a life as I can thanks to my support system. My parents listen and help whenever I need it, even if they don’t understand exactly what I’m going through. My friends plan nights in to hang out with me to make sure I still get to have some fun. My boyfriend drives at night when I can’t and supports me when I feel like I’m falling apart. They know I need my naps, they don’t judge or make fun of me when I fall asleep randomly and they have taken the time to educate themselves about my sleep disorder to better understand what I’m going through. And I honestly believe the action they have all taken to show their love and support that means the most is taking the extra time to educate themselves and ask questions. They genuinely show an interest in my sleep disorder, and that’s all I could ever ask for.

So yes, I am so much more than that normal 22-year-old you thought I was. Like many others with invisible and chronic diseases or disorders, I am a warrior. I fight not only to stay awake and healthy, but also to educate when it comes to %%vLTBmrfP8U%%. I hope someday there will be an understanding that we who h%%niXCtGe6Uq%%epsy aren’t “just tired” or “lazy,” but rather we are living a reality that is nothing like the movies. I don’t know what the future holds for this sleepy 22-year-old warrior, but I am here to tell you that no amount of mocking or judgment will keep me from raising awareness and advocating for those who might just be a little too tired to do it themselves.

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What Goes Through This Mom's Head When You Say 'All Kids Do That'

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My son wouldn’t get out of bed this morning.

All kids do that.

No, what I mean is that he refused to get out of bed and I had to carry him out of his room.

All kids do that.

No, I mean that I had to lock his bedroom door so that he would not get back into bed.

All kids do that.

No, I mean that he threw himself at the door, beating it and ramming his head, shoulders into it. His skin was getting red spots on where he was hitting against the door.

Do all kids do that?

I had to wrap my arms around him and guide him to my rocking chair to try to soothe him.

Do all kids do that?

He was feeling powerful anxiety. He was terrified of going to school because he doesn’t know how to deal with the other human beings there. My son who scores off-the-scale on standardized tests can’t figure out the social rules, and that terrifies him, too.

Do all kids do that?

My son was in pain and trying to get away from what scared him.

My son was in pain and I had no idea how to help him.

Most of the time “all kids do that” is well-meaning, intended to be reassuring that my son is not different, as if different was something to be avoided, something to be saved from.

There are times when it is hurtful, when it has the effect of dismissing my concerns and worries, when it is obvious the listener is the one uncomfortable with “different.”

It becomes clear that I have not communicated well what it is I’m trying to say, either because I can’t find the right words, or I’m reluctant to describe behavior I know that all kids do not do, because I don’t want to see the fearful “different is to be avoided” expression on the listener’s face.

Most of the time I am polite. Most of the time I accept the comment assuming the well-meaning intention and roll on. But in my head I might be having the above conversation.

Maybe irritation flashes across my face — a split second that, if the listener is observant, reveals that in my head I’m shouting, “How the hell do you know?”

Sometimes there are people who don’t say that. They get a look on their face that tells me they understand “My son wouldn’t get out of bed this morning” is code for all the rest of what happened, that my placid comment is really the tip of the iceberg. Maybe they aren’t afraid of “different.”

Or maybe they simply see my own fear and pain that my child is in pain. They don’t try to problem-solve for me or try to give me advice until I ask for it. They listen with kindness and compassion.

When I find those people, it is like a glass of cold water in the desert, fresh air in a stale room, sunshine after a storm. I want to hug them.

Follow this journey on Autism Mom.

Lead photo source: Thinkstock Images

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Why I’m a Proud Helicopter Parent of My Sons With Autism

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I’m the mom you see at the park, following closely behind my child. Sometimes I play with him and follow his lead. Like really play. I stomp in the puddles, walk up the slide and swing so high that terror dances with exhilaration. He reminds me how good it feels to do things that we adults call pointless. Sometimes I am simply a shadow, making sure he stays safe and is well behaved. Either way, I’m always close behind.

I have heard it referred to as a helicopter parenting. “It means being involved in a child’s life in a way that is overcontrolling, overprotecting, and overperfecting, in a way that is in excess of responsible parenting,” Dr. Ann Dunnewold, a licensed psychologist, told Parents.com. So you see, it’s supposed to be a bad thing, but as far as parenting goes, it’s one that is necessary for me.

I don’t go to the park to relax. In fact, I frequently have to talk myself into even going, and I have a pep talk with myself the whole drive there. You can do this. You will not let your fear compromise their childhood joys. And I often make a pact with myself — 30 minutes. No matter what you can handle 30 minutes.

I don’t mind if you sit on the sidelines. This parenting thing is tough, and if you have a minute or 20 to sit and relax, by golly, go for it. Heck, I don’t even care if you paint your nails while eating a turkey sandwich. I don’t mind if you’re like me, following close behind. Unless it’s dangerous, how you parent is absolutely none of my business. When it comes to parenting, there is no one size fits all. There are often two extremes and a million grays in between.

I’ve seen a surge of “Dear Helicopter Moms, You’re Ruining It for Everyone Else” articles. I feel sad for anyone who would witness my behavior and interactions with my boys and simply see a helicopter mom. They’re missing out on all the beauty in our gray.

You see, both of my boys have autism. A walk in the park is anything but. I often leave the park with my ponytail undone. I’m speckled with earth and sweat. On rare occasions, I leave with tears in my eyes.

My youngest has trouble following simple directions. Stop. Come here. Wait.

We work on it daily in therapy, but it is best reinforced through real-life experiences. He still tries to run by himself into dangerous parking lots and streets. He would hop into a stranger’s car without a glance back at me. It would be safer and easier at home, but that wouldn’t be fair to him at all.

My oldest has a hard time sharing and waiting his turn. He has problems with proprioreception or the ability to “feel” his body and what it’s doing. I have to make sure he doesn’t knock over your little one on his way to the slide. He frequently runs into people. He also thinks as long as he says, “My turn,” he can have something instantly. The swing, your ball, your chips.

I love my precious two, and parenting them is an honor. I just wanted to share some gray with you today, because it’s easier to love more and judge less when we know someone’s story. And everyone has a story that helped shape us into the person we are and the choices we make today. My boys taught me that if all we see is the cover, we’re missing out on the best parts of what makes up the book. I keep that in mind when I feel that pang of unfamiliarity when watching people interact in the world.

The way my children view the world isn’t wrong, but it is different. And because they view the world differently, so do I. And that is a gift. It’s given me a better perspective and given us a beautiful story.

A Proud Helicopter Parent,

Chrissy

Chrissy Kelly.2-001

Follow this journey on Life With Greyson.

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To the Man Who Said ‘Just Don’t Fly With Him If That’s the Way He Is’

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To the man on our flight from Minnesota to Texas,

I’m sorry if my son Will’s occasional movements and loud talking disturbed your flight. I truly am, though in all honesty, he was good on this flight and no more active than a neurotypical child would be. He never once directly disturbed your seat, just the empty seat next to you that was in front of him. (I try as much as possible to put him behind empty seats.)

I’m also sorry you couldn’t speak to me or the flight attendants civilly during the flight to tell us your problems with my son, so that either you or we could have changed seats (there were several available). I’m even more sorry you felt the need to loudly bring up your evaluation of my son’s behavior at the end of the flight and not temper your response as I tried to explain the situation.

However, I’m not sorry that I will not heed your suggestion of “just don’t fly with him if that’s the way he is” because, as you wouldn’t let me explain, he needs to fly to Minnesota every other week because it’s his only chance at life. And frankly, no special needs parent should have to hear that callous and discriminatory restriction.

I’m sorry you didn’t take a moment to talk to my boy and see what every other person sees as we travel: a sweet boy with a loving and generous heart, who has a smile and a kind word for everyone he meets. My boy sees the people most of us ignore and I love him for his ability to make friends with every person with whom he comes in contact. I’m sorry you didn’t want to be his friend, because you’ve missed out on something special.

I will pray for you and pray that no one you love ever receives a terminal diagnosis that causes them regression or loss of their faculties that makes others look at them as if they are “abnormal” or “worthless.” Because I never want anyone, even you, to feel how I was made to feel tonight.

All people are significant. All people deserve kindness. All people deserve respect. My son knows that. I hope one day you learn it, too.

Sincerely,

Momma WILLPower


To learn more about Will and his journey with Sanfilippo Syndrome, please visit the WILL Power Facebook page.

To learn more about Sanfilippo syndrome and what you can do to help, please visit www.CureSFF.org.

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