NARCOLEPSY

Elara Blair is a well-known Professional International Alternative Model, Cam Girl, Pornstar, Photographer, Photo Re-Toucher, Videographer, Actress, Clothing & Accessory Designer, Makeup,Hair and Wardrobe Stylist, YouTuber, Blogger and Networker. She also has a disabling condition called narcolepsy which affects her sleeping cycle, sometimes causing her to fall asleep without control thus leading to psychological and social impairment. However, she does not see this as a barrier to achieving her goals and dreams. She discusses how she came to do all of these things and the daily challenges she faces.

I know I have lots of jobs but I’m working towards achieving my dream of becoming a photographer, director and advertising agent. My greatest challenge is keeping my narcolepsy in check so that I can have a normal routine. I am completely self-employed in order to be able to juggle my health with work and make time to spend with my loved ones. My daily life is not what most people would consider good – it’s difficult but I make the most of it. I have learnt to accept my circumstances, be optimistic and try to educate people about sleep disorders and help other narcoleptics through my Youtube channel.

If I didn’t have narcolepsy, I would be serving in the Air Force, travelling and taking pictures. When I was denied joining them my heart was crushed. I felt like someone entered my life and stole all my dreams, abilities, goals and talents. I feared that I would never become anyone or do anything because I can’t even complete an online course or project. I simply cannot concentrate or process information nor understand and communicate what I am supposed to. This interview is easy- I could write about myself, how I feel or how others around me struggle with this condition all day but learning new things is so very hard.

Narcolepsy is majorly misunderstood. It is caused by a shortage of a chemical in the brain called hypocretin or orexin. This chemical regulates your energy levels, sleep and so on. Narcolepsy can cause ‘cataplexy attacks’ which usually occur with strong emotions such as happiness or fear but it can also happen by surprise and therefore makes everyday tasks more dangerous. You lose control over your body so your head drops and you fall to the ground without the ability to stop yourself or make sure you are in a safe place. Going to get groceries can be a challenge and a fear. For some people with cataplexy, experiencing human nature and life’s best sensations, such as falling in love, can cause attacks making it almost impossible to experience a relationship or sexual bond. Sufferers often avoid feeling happy or laughing in case it triggers an attack.

Narcolepsy affects your attention creating poor academic focus and ability. This includes: poor understanding, comprehension, communication, self-management and planning. It causes short and sometimes long-term memory failure, hallucinations, impulsiveness, anxiety and unpredictable negative changes in mood.

Narcolepsy affects your attention creating poor academic focus and ability. This includes: poor understanding, comprehension, communication, self-management and planning. It causes short and sometimes long-term memory failure, hallucinations, impulsiveness, anxiety and unpredictable negative changes in mood. Hopefully you will begin to understand that there is almost nothing in our lives that this condition doesn’t impact.

The Swine Flu vaccine is slowly being proven as the possible cause for a massive increase of narcolepsy, you can also be born with it and my doctor said you can also get it from cocaine abuse. Narcolepsy has noticeably affected me since I was about 16. First with muscle complications, then other symptoms followed and increased in severity until it affected my daily activities. I have good, average, and terrible days even with medication.

Since narcolepsy is a rare condition which manifests through many different symptoms, it is difficult to pinpoint and often misdiagnosed. This is why I had problems finishing or excelling in school, getting, keeping or having a job, a relationship or a family. There are successful people with narcolepsy but it doesn’t mean they don’t struggle; each and every single one of us do, but at least we are lucky to have each other and hopefully others who understand and don’t criticise us by calling us lazy, blank, disinterested or monotone. They are indicators of the disease, not who we really are.

For several years I felt constantly drained and exhausted. I fell asleep in every single class for 2 years. I always complained to my doctor but he had no solutions. Waking up disoriented in my classes not knowing if I had fallen asleep in the first place was the first major sign. I was a good kid; I stayed mostly clean and sober so I didn’t know why this was happening. I go to sleep around 9:00 pm and try to wake up around 7:00am but always slept through my alarm and accused of laziness or skipping class but I am an eager learner and loved school until it dragged out over years. I still don’t have my diploma and my grades don’t reflect my true intelligence. I notice I’m misspelling more and more as months go by. This could be due to all of the medications or narcolepsy itself. I thought my brain was dying. I used to correct my teachers and was University-level in English but now I misspell 3 letter words and even my own name. How scary is that!? I usually catch myself when I misspell but it’s soul-tearing to notice these skills slipping away.

I demanded to do some tests to see what the heck was going on! The point that my diagnosis was determined was my second Multiple Sleep Latency Test. I am prescribed a stimulant called Modafinil at 4 doses daily which is the legal limit. I still feel like it isn’t enough but my new sleep doctor told me I will never be 100% and that there is no cure so I have to adjust my lifestyle in order to deal with my condition. There is no overcoming it. I have it for the rest of my life and medication only helps me cope. Once I was on a stable dose, I was then able to do certain tasks like cooking for myself again. It was both a relief to know what was going on with me but also a strain because I had more questions that may never have answers; will there be a cure?

We don’t regenerate when we sleep which causes the exhaustion and excessive daytime sleepiness. I discovered that I have NREM (Non-Rapid Eye Movement), this is interesting due to the fact that I don’t dream 90% of the time. REM sleep is when you dream and usually when your body regenerates cells and restores itself. This is also why I experience what are called ‘hypnagogic hallucinations.’ My doctor explained that my dreams are expanding into my daily life. They can be scary but they are more so confusing, like I would believe I had conversations that didn’t really happen or see a cat running around in my peripheral vision.

Some people are supportive while others have no mercy at all and tell me I seem fine. But that’s the thing- it’s not what’s on the outside, it’s what they cannot hear, feel, see or even comprehend. I’m not asking for special treatment, just some understanding that I cannot do some things you might expect. No matter how much I may want to, I simply cannot. I have trouble finding people who are at least empathetic towards my obstacles let alone understand them. I was fired from a volunteer program for looking bored/uninterested which is probably one of the most pathetic things to happen during high school; it made me feel like a stupid loser. They invited me back once they learned about my diagnosis but I didn’t want to be on their just team so they could feel better about firing me due to a condition I cannot control. Screw that. From that day, I decided only to do things that make me happy and with people who understand.

I have trouble finding people who are at least empathetic towards my obstacles let alone understand them.

I leave the house to visit friends around once every 4 months, I go to 4 events a year maximum but it is usually 1 every 6 months. This shows how hard it is to have a social life; I am inclined to say I don’t have one besides networking online. Not only is traveling so exhausting, I worry about not being able to get back home due to either falling asleep or being too tired from all the excitement. This year I am trying to do more. I am becoming so bored staying inside and being mostly self-employed. I want to experience what else the world has to offer.

My biggest fear is not getting to do anything I felt sure about like being in the Air Force, directing, advertising, volunteering and being a traveling photographer. I will never be able to do some of these things but I have faith that I can be healthy enough, regain skills or learn to succeed in directing, advertising or at least photography and blogging. I am hoping I can be successful in at least one of these areas enough to support myself. The majority of my jobs such as porn or webcam modeling are somewhat “superficial.” I can only do them while I look young. I do it simply because it is something I am able to do, I enjoy it, it excites me, and I can be myself and be creative doing these things.

The free-spirited attitude of the porn industry motivates me toward my goals despite my serious health condition. When you can be yourself against the odds, you will always have a positive attitude towards whatever enables you to express yourself fully. Everyone I work with accepts and understands my capabilities. They know I push myself and always set higher goals for myself that I must work hard to achieve. Stuff that come easy to most, things you may not even think about, is or can be difficult for me. If I fail, all it means is I must try again.

Everyone needs to overcome their obstacles, no matter what they are, in order to gain more self-confidence. We need to care about the future and push hard for things we wish to achieve and excel in.

Overcoming the struggle to accept my narcolepsy took me several years. I still face tough days but who doesn’t? Everyone needs to overcome their obstacles, no matter what they are, in order to gain more self-confidence. We need to care about the future and push hard for things we wish to achieve and excel in. To keep a level of sanity I tell myself I cannot change what has happened, I can only create what is to come; ultimately we have control over what happens right now. Whether you are healthy, sick, or worse, you must make the most of what you have. Do all you can do- no one achieves anything sitting on their ass, do they? I mean, look at the people you admire and think about how they got to where they are- usually there is a lot of back-breaking work, sweat, tears, frustrations, determination, accomplishments, happiness and then the achievement. Nothing good and important ever comes easy. I have always and always will want to thrive in every aspect of my life.


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  • http://www.elarablair.com Elara Josephine Blair

    Thank you so much on this true, image of a Narcoleptic, and how we feel, and how we are also judged daily!

    I really appreciate you asking me to do this interview, and i know others are also appreciative and thankful for spreading the word, and educating others on Narcolepsy!

  • Heidi

    This is an amazing well written article! It nails who we ( people with narcolepsy) are! Thank you Elara !!!!

  • http://yahoo Cindy

    This is an excellant artical about Narcolepsy. I’ve never even heard of the chemicls hypocretin or orexin. I’m grateful for this article that educates those of us that have taken the time to read it. It gives me a clear understanding of the disease and those that are dealing with it. Thank you.

    • Elara Josephine Blair

      No problem Cindy, i am glad you like it, Heidi did a great job on writing it.
      <3

  • sarah

    very well put. im going to share this on my page because I still have people close to me that just don’t get it.

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    • http://itsmyurls.com/carrieannburns Carrie-Ann Burns

      That is just wrong! That is nothing of what Narcolepsy is, this is just sick you should remove your comment and ip address should be banned!