Grade 9

Okay, let's get one thing straight. Grade 9 BEATS Grade 8. Okay, now that that's out I can tell you all about sleepy me in high school.

I have Science, English and Art this semester. I love my classes. Okay lets be truthful here, Science only keeps me awake because I can't fall asleep when important notes are needing to be written down. Can't say NO to the notes. Nope. I think I just don't find it very interesting compared to English and Art. I've just never really enjoyed Science and that's okay because everyone has their own opinions.

The first time I fell asleep at school was in Art, guaranteed that it's my 3rd period and I'm so tired at that time. But, I love art and don't know why it would put me to sleep. My first time I fell asleep in Science was...get this...right before a test!! I know, I'm so bad - well not really cause it's just my sleepy side that sneaks its way into my classes sometimes. Of course sometimes I get that nap in Science sometimes and that results in me not having one in Art! Yay!

I've joined the Book Love Club, Student Council, The Flyers Newspaper and I think that's it right now. But I intend to join more clubs once they become available.

Ultimately, I'm happy at my high school! Everything about it just makes me smile. As well as the people that go there!♥

World Narcolepsy Day!

To really have a day dedicated to narcoleptics, kind of feels comforting after all these years.

September 22nd, 2019 - this world's first Worldwide Narcolepsy Awareness Day! It's so exciting, you know?

Even though I can't take part in any of the actual activities because they are in the states :(  it doesn't mean I'm not there at ♥heart♥, because I am!!!

I bet Julie Flygare is doing an amazing job raising awareness on this special day. I mean, she always does an amazing job but, she's that much more amazing today! I love talking about Narcolepsy not because it makes me special but because it makes me know that it does not define who I am. It's just one small part of me and the rest is creativity, inspiration, kindness, and everything else that I am!

It's as simple as that. Just believe in who you are and except it and then, everything else will fall into place.

 Today, I feel like people all around the world is raising awareness for our way of life. This makes me believe that no one can be alone, when there is somebody right beside you, facing the same problems.

Anyways, I give my thanks to everyone who made this day possible! It is truly special day♥

Graduating Grade 8!

I'm so excited. It's the last day of school for the students in grade eight at Central Public School. OMG!

Tomorrow everyone I know in grade eight will be graduating by my side. We will be dressed up in our beautiful dresses, with our hair and makeup all done making us shine like the stars.

I will cherish these past 5 years at this school and hold them in my heart forever because they are a chapter of my life and every chapter must be remembered.

I can honestly say that I am sad to leave this school, knowing that I will be leaving my E.A. that I've known since grade 3 and all my friends that I've known since grade 4. The group of friends that I've made throughout my years at Central have become my chosen family. They were all so supportive about my medical condition and so kind to me all the time.

After the summer, we will be going into grade nine and starting a new chapter of our lives.

Sorry.... just letting this all sink in. Okay we're good. I am grateful that I could have known all the teachers and friends that have helped me reach this point. Since I am not going to the same high school as all my friends, that will probably result in the loss of contact between my friends and the making of new friends at the high school I'm going to.
 just because we are leaving this chapter, it doesn't mean that we can't revisit it in the future. Like people say,

How does Narcolepsy Affect Everyday Life?

Any normal person would just think what kind of difference does it make if you are a little more tired than others. Well...that's where they are wrong.

If you think it's just mere sleepiness, it's much more than that. In my case, if I don't have a nap everyday I start to become nauseated which is a result of being over tired.

First of all, if you have type 1 Narcolepsy you get a little gift called Cataplexy which seriously limits your ability to do and perform certain activities. Don't stop reading there, there's a lot more to learn about.

Speaking from personal experience, I understand how much narcolepsy can impact a person's life  and how it does. For me, I can't do certain things that my friends are certainly capable of doing, and without supervision. That includes swimming which can be very dangerous if unmedicated. If you can imagine, the cataplexy paralyzes your body but just because your body is paralyzed that doesn't mean that you stop breathing. Knowing this, your body paralyzes and you drown so, that can be a very dangerous sport for us narcoleptics.

My advice to those out there who don't have this medical condition is that you don't just see the disability; see the person behind the disability.

Hope

Almost every year my family sends money to Wake Up Narcolepsy. Since I have this life altering medical condition and I understand how people with Narcolepsy feel, every year I like to donate to Narcolepsy Research in the hopes that they will someday procure a cure or type of miracle medication.

I, myself go through each day and like every other person on earth I live through my struggles but that doesn't always mean that it's easy. I just want people living with Narcolepsy to realize that you are NOT ALONE. You may not know people who have Narcolepsy but, that doesn't mean that you can't get the same understanding and support from your family and friends. And even though I'm only 14 years old, I have hope for my future and that's what matters.

I raising money for Wake Up Narcolepsy so that this unrecognized medical condition will be known. I am raising money to have hope and to raise awareness so people know what kinds of days and nights we narcoleptics have.

I like to think that I will someday drive or be able to get through a whole day without a nap and I do hold the hope of those dreams but the amazing thing is that my family is always going to be there to help me get through the times that I can't do the things that most other people can do.

To everyone else out there who understands the complexity of Narcolepsy and to those who live through everyday the way I do, always remember that YOU ARE NOT ALONE. I am here for those who need support and understanding and who knows you might be sitting right beside a narcoleptic on the train or bus. Who knows.

All I know is that the most important thing to me is hope. Hope for my future. If I have hope for my future that's all I need to keep me going everyday.

If you would like to support my cause of helping narcoleptics get the proper medications and living a hopeful and wakeful life, give a donation to Wake Up Narcolepsy.
I thank everyone who has given a donation to Narcolepsy Research and the future of narcoleptics. I think I speak for everyone out there when I say it is greatly appreciated. Thank You!

Often Asked Questions About Narcolepsy

When I first got Narcolepsy I was 5 years old and didn't understand the seriousness of my condition. As I got older I started to realize more and more how it affects my daily life. I started to ask questions about Narcolepsy and what it was. My parents typically would know the answers. I just wanted to talk about some of the questions that have risen during my time with Narcolepsy.

1. What is Narcolepsy?
Narcolepsy is a rare neurological disorder that affects the sleep center of your brain.  The first thing you should know about Narcolepsy is its a life-long medical condition. There is officially no cure but, there are treatments and medications that can improve your day to day life. Narcolepsy can cause excessive daytime sleepiness, cataplexy, sleep paralysis, and some more symptoms. To comprehend the effects and life changing disorder of Narcolepsy visit Wake Up Narcolepsy.

2. Is there a cure for Narcolepsy?
Unfortunately, there is no known cure for Narcolepsy. There is intensive worldwide research being done to find a cure for Narcolepsy but currently there is no cure. The unique circumstances (loss of hypocretin) in ALL cases of Narcolepsy causes for it to be irreversible and life-long. However, Narcolepsy can be safely controlled by the use of regular drug treatments. Some effective drugs are Xyrem, Modafinal and Effexor. The effectiveness of medications can vary depending on the person taking it.

3.  Is Narcolepsy dangerous?
It is dangerous because you can have excessive daytime sleepiness or a sleep attack which can cause the disruption of any activity (eating, walking, driving, swimming, etc) being done at the time of the sleep attack. Operating a vehicle with untreated narcolepsy can be extremely dangerous for you and others around you. There is also the cataplexy aspect of narcolepsy which can cause serious danger such as car accidents if you have a cataplexy attack while driving.

4. Is Narcolepsy the same as Epilepsy?
Narcolepsy can come with the symptom Cataplexy which some people mistake for seizures. Epilepsy is a disorder in which a person has seizures. When a person with narcolepsy and cataplexy has a cataplectic attack it may seem as though they are having a seizure; but it is actually just muscle loss in which the body is paralyzed. Cataplexy causes NO internal brain damage that seizures can cause. Narcolepsy is totally different than epilepsy even though it may seem similar.

5. Do people with narcolepsy have trouble sleeping at night?
People with narcolepsy are known for being very sleepy during the day. Although, it is not uncommon for people with narcolepsy to have trouble sleeping at night. I speak from personal experience when I say, narcolepsy has caused me many difficulties during the day and at night.

6. Are you born with narcolepsy?
People are not born with narcolepsy. In most cases, symptoms become apparent during childhood, adolescence and adulthood. However there are cases where children as young as 3 have been diagnosed.

7. Am I alone?
The first thing to know is that you are never alone. Even if your family isn't there to support you, there are many people in the world who have narcolepsy. Some may live near you, others on the other side of the planet. But the most important thing to realize is that you are never alone. There are people who raise awareness about narcolepsy, who believe it is a condition that needs to be known throughout the world. My personal inspiration to let people know about my condition is the one and only Julie Flygare. She herself has narcolepsy and although at times it can be frustrating and difficult I live in peace with myself because of the awareness she raises about narcolepsy. I give a shout out to Julie for all the work she has done for all of us sleepers across the world. She and many others give me hope.

I hope that this helps answer some of your questions.
 

Someone New

A few weeks ago, I found out that another student has Narcolepsy and Cataplexy. I was so excited seeing as Narcolepsy is rare in children (most children with Narcolepsy don't live near me).

When I found out that there was another kid who has Narcolepsy I had to know more. I found out that he lives near me which is AMAZING because I can't believe I found another kid with Narcolepsy let alone one who lives near me. It gets better. He's my age; can you believe it!

I'm just so excited to meet him. I bet we'll have lots in common besides if not, I'm sure we'll have at least one thing in common.
He lives in the city where I'll be going to high school so it would be amazing if we got to go to high school together. Having a friend who's my age and who has Narcolepsy gives me hope that I'm not alone. That others like me are out there.
I can't wait to meet him.

Narcolepsy Charity

Recently at school I decided to participate in a charity system where you decide what charity you are going to raise money for. I chose "Wake Up Narcolepsy" because I have Narcolepsy; it was only practical to do my charity for Narcolepsy Research. I sold bookmarks, bracelets, necklaces, wallets, key rings, Narcolepsy T-Shirts to raise awareness and other free Narcolepsy give away items. It was very successful and I raised $78 for Narcolepsy Research. Wake Up Narcolepsy specifically said that whatever I made (in terms of money) they would match. Everything turned out well and I'm glad I decided to do this.

October is here

I can't believe we're in October already. What are you going to wear for Halloween? It's coming. I'm going to be a sleepy person. I'll wear pajama's, a sleeping mask, slippers, and bring a teddy bear. Starting coming up with ideas for your Halloween costume because before you know it, it'll be here. BOO!

Vanna

Most recently we got a poodle. Her name is Vanna. When we got her she was pregnant; we had her for a few weeks then gave her back to the breeder. Vanna had 11 healthy puppies. 5 girls and 6 boys. I can but only tell the truth when I say they were beautiful puppies. We are fostering Vanna for the breeder while she takes care of the other puppies and dogs. She is so cute, more than you can imagine. So cute!!!

Isn't she so cute? I think so and if you don't, you're crazy. I mean how can you not love that cute face.

Birthdays

My birthday was a month ago. It was amazing. I got to have my friends over for a sleepover but two of them couldn't sleep over. I got $55 worth of iTunes cards and trust me that's a lot. And a few other things too. But I also got to spend my birthday with my family which was awesome too. Maybe more. But my birthday isn't the only one in the summer.

In a few days I get to go to my friends for her birthday party. Which is a Drive in movie/ Pool party/ Sleepover birthday party. I've already gotten her presents which I think she'll really like, oh did I say like I meant love. I can't wait. It'll be sooo much fun with her and the other people who are coming too. I just know it will be awesome, amazing, fantastic and more.

Narcolepsy Symptoms

There are quite a few symptoms of Narcolepsy. They usually have to do with excessive daytime sleepiness and abnormal REM sleep. Other unusual side effects of abnormal REM sleep, includes hallucinations, sleep paralysis, and Cataplexy (sudden loss of muscle tone). It's usually triggered by laughter or humor, sadness, surprise or frustration. Not all people who have Narcolepsy have it come with Cataplexy. However they all suffer from excessive daytime sleepiness.

Excessive Daytime Sleepiness...

To normal people, after their naps they stay refreshed for about a few hours but to people with Narcolepsy they stay refreshed for about half that time. To people with Narcolepsy the urge to sleep is often uncontrollable. People with Narcolepsy take certain medication to help them stay awake through out their day because their brain is always sleeping incorrectly. People with this condition usually have a hard time going through long periods of physical exertion, loud noise, sudden temperature changes and other forms of stress.


 Cataplexy...

64% - 80% of all narcoleptics go through their life with the development of Narcolepsy with Cataplexy. Cataplexy is a symptom of Narcolepsy when the person loses complete control of muscle tone. It's usually triggered by strong emotions that are usually triggered often. Humor is the most

common trigger known for Cataplexy. But there are still other triggers like sadness and proudness even a surprise or frustration can do the trick. When a person with Narcolepsy experience Cataplexy they can have a complete fall or just head drops and wobbly knees. When these people are not medicated, they're more likely to have complete falls than just head drops and wobbly knees. When Cataplexy occurs the person may not be able to more or speak for about 30 seconds to a minute. But some episodes can last for 20 minutes, But it's unlikely. Even though their body cannot more or speak they are still aware of what's going on around them and they can feel themselves too. They just can't more or speak. Cataplexy is the most dangerous side effect or symptom of Narcolepsy because if you fall unexpectedly quickly on a hard surface you could be seriously hurt. When a person has a complete fall it looks like a medical emergency to strangers but it's just a medical condition that others don't know about. If a child has a complete fall in a public place like a grocery store in an isle or in a store it would just look like a child goofing around. But if an adult has a complete fall in a public place someone might think to call 911 because adults don't usually completely fall or goof around. If during a Cataplexy episode the person can't move into a comfortable position it can hurt them, a person can help them into a better position.

Hypnagogic and/ or Hypnopompic Hallucinations...

This isn't daydreaming this is real dreaming while awake and experiencing things. The brain mistakenly thinks the false and imaginative information is real. 86% of all narcoleptics experience often hallucinations of scents, visual things and auditory sensations while falling asleep. This can happen at any time of the day. This is also a dangerous side effect or symptom of Narcolepsy because if you're driving for example and you see something that isn't actually there you might cause an accident. These hallucinations can at some points be dreamlike and others be quite real. That's why it's important to try to be aware of the things that are actually happening around you not the things that are just a figment of your imagination. Some hallucinations can be quite frightening and cause anxiety. These hallucination take place from the transition from wakefulness to sleep. These are REM related abnormalities.

Sleep Paralysis...

Sleep paralysis is the inability to move or talk at the beginning or end of sleep for several seconds or minutes. 63% of all narcoleptics have experienced this symptom of Narcolepsy. When someone first experiences sleep paralysis it can be quite frightening and they say they feel unable to be when in fact they actually can. This is also another REM abnormality. Everyone meaning even people without Narcolepsy experience paralysis when they enter REM sleep but people with Narcolepsy, their brains are out of sync with whatever the stage of wakefulness the body should be in. So sometimes it might take a few minutes to for the brain to let the muscles release from the grasp of REM sleep.

Insomnia... 

Insomnia is having a real hard time falling asleep at night. While most people can fall asleep just like that people with insomnia need a little bit longer to fall into REM sleep.

Excessive Hunger and Obesity...

The part of the brain that controls your sleep stage cycles also controls your ability to control how much you eat. People with Narcolepsy when tired may feel the urge to eat. They eat when tired because they're trying to get more energy when in fact they're getting less exercise  they get quickly exhausted by physical exertion and they suffer from excessive daytime sleepiness. Many narcoleptics suffer from the after effect of sleepiness when they eat carbs/sugar.

Slurred Speech...

Slurred speech is a symptom of Cataplexy. Because of when you have an episode of Cataplexy you lose all muscle tone in your body you also lose it in your mouth as well. That's when slurred speech makes it's way through into the symptoms category.

Nighttime Wakefulness...

Nighttime wakefulness is when you have a sudden burst of energy at night. Which comes with a bunch of hot flashes, elevated heart rate and intense alertness. Some people feel full of great ideas and others are darkly depressed but before anything really happens they just fall back asleep.

Fun Facts...

Want to hear some fun facts about Narcolepsy, well I'm hear to tell you that. Did you know that if a person without Narcolepsy stays up for 30 hours that's equivalent to what a person with Narcolepsy feels like all the time. Narcolepsy is not as common to see in kids as it is in adults.;
 
     

It's my Brother's Birthday!

Yay! He's turning 17 years old. Can you believe it because I can't. No way! We have a wonderful beautiful cake for his birthday. I can't wait. I got him some pop and sweets and chips. I'll tell you the rest later.

What's that I hear, Valentine's Day!

Valentine's Day is a day that you can spread you love to each other meaning friends and family, teachers and even enemies.

Inspiring Narcolepsy Quotes

 I believe that these inspiring narcolepsy pictures can get people to understand that even when you live with Narcolepsy your whole life there's always a new day coming with lots of fun adventures

that people with Narcolepsy can experience and enjoy.

Life Style Changes 2

Breakfast: Breakfast is one of the most important meals of the day. You should be eating fruits and veggies and maybe some dairy but probably NO CARBS for people with Narcolepsy but just in general it's still not a good idea to have them because it makes you tired.

Snack: Snack time is what holds you off until your next meal like lunch or supper. You shouldn't be having snacks constantly like every half an hour or so.

Lunch: Lunch is the 2nd most important meal of the day because whatever you eat for lunch keeps you going or doesn't. Lunch time should be around 11 am - 1 pm maybe 1:30 because if you have your lunch around 2 pm it's to close to suppertime you won't be hungry. Lunchtime should be made up of a few carbs and protein.


Supper: Suppertime is the last meal of the day for most people. For Supper you shouldn't eat a lot of whatever you're having because what usually happens is that you never burn off the calories you ate unlike lunchtime and breakfast because those are in the middle of the day. Supper should be made up of a few carbs, veggies, salad, and protein.


Dessert: Dessert is what you would call having your sweet treat for the day. Dessert is usually after supper not before. People sometimes have cookies, cake, ice cream, pies anything like that. There are tones of sweet treats out there but you still have to remember the consequences of what you ate and of how much you eat of it.


Bedtime: Most people don't have a bedtime snack but I do. My bedtime snack is usually fruit, veggies, dairy and NO CARBS.

It's the New Year!

It's  the New year, YAY! I'm so excited to start this new year off with a great start. It's almost time to go back to school with your friends. Today is the last day before school starts off again. Well I hope everyone out there had as much a GREAT Christmas as I did. Well go to go, see you when school has started again. Bye

Dreams do come true

Some people say that dreams never come true but in my mind you should never stop believing in yourself or your dreams. One day sooner or later that dream of yours will come true. Everyone has at least one dream and that one dream is like a special memory. In my mind we Narcolepsy people have a bit of a harder times trying to believe that dreams can come true. But other people might think differently because every dream takes a little or a lot effort to come true.

Falling Asleep

You know that feeling when you just start falling asleep, because I do? I fall asleep really easily, well probably because I've got Narcolepsy and that makes you very, very sleepy all the time. To tell you the truth I sometimes actually fall asleep in class shh don't tell anyone. I usually fall asleep in class when it's a boring subject mostly math but sometimes science and french class. But when it's a fun subject like ART and English it keeps me awake! Gym keeps me awake anyways even if I don't like it what we're going to do because I keep moving around and liking the subject Gym is just a bonus. Do you ever fall asleep when you're not supposed to because I kind of do, don't tell anyone?

Treatments for Narcolepsy

Unfortunately there is NO cure for Narcolepsy so that means once you get it there's no getting rid of it. I've had Narcolepsy for 5 or 6 whole years and I'm only 11 years old so I've practically gotten used to it. But you can't ignore the possibility that one day there could come out a cure for Narcolepsy but a cure doesn't completely stop Narcolepsy it just makes it easier to live with, I mean like you feel like you don't have it anymore but you still do. I'm not saying that a cure doesn't help Narcolepsy but I'm also saying it doesn't completely cure it either. Narcolepsy isn't as bad as some others medical conditions but it isn't the best either. If you have Narcolepsy you should be grateful that it's not anything worse. But for me in my opinion I would have had a better life then I'm having now but like I said once you gotten it there's no getting rid of it. I've lived with Narcolepsy for 5 or 6 whole years like I said but that doesn't mean that I was born with it, so I know what it's like to be completely normal and to have Narcolepsy so I kind of have both perspectives. I'm actually not sure if you can be born with Narcolepsy and or Cataplexy but I don't think you can. I hope someone out there will be able to find a cure for Narcolepsy one day. I hope that this has helped you understand Narcolepsy a bit better. Bye