Friday, 6 December 2013

Life's not good it's great;

I don’t know where to start; honestly I am so grateful and humbled by the people who have emailed me both recently and in the past. This blog was never intended to be anything more than sharing my experiences as a narcoleptic. My life is above average for a narcoleptic, and I’m happy that this life of mine is inspiring the life of others. I honestly figured that most people who read it would be my friends, family members and past teachers. To see how far its gone in 3 years boggles my mind, to see how many people view my blog monthly astonishes me. I feel whole when I write this blog and I feel uplifted and ecstatic that I have inspired, motivated or given hope to people around the world. Truthfully your emails encourage me to be a better person, motivate me to write more and give me faith that the future of narcoleptics is positive. So for that I thank you, you all are wonderful people and I hope in the near future I am able to make it to a Narcolepsy Conference to meet you all.

My life is looking pretty promising from where I am sitting. If you’ve followed along on my blog for a while or know me personally you’ll have known I went to school for photography. You also may have realised that since college I’ve done next to nothing in the photography world. It was kind of unintentionally intentional. I think taking a year and a bit off was one the best decisions I made. I know my parents wanted me to or at least questioned why I didn’t dive right into my career and start a business. However for me, I think I would have gave up on it within the first month. There was moments I even questioned if photography was where I wanted a career; I think it was just the simple fact that I don’t like being told what to do and school was a lot of that! ;)
I realised that it’s not like I was sick of photography, but I was sick of having people to please and my crafts being what pleased everyone. I love photography, I get a real joy out of creating images and peoples reactions to them…however after school I had had enough of the go go go and needed some slow down and breath time. Quite frankly it’s been really good for me, I’ve been able to focus on other things, and now realign my heart into photography.

With my heart back in it I’ve decided to invest my energy and time into my career. I realise it’s going to take a few years to be where I want, perhaps even longer. However the longer I wait to start, the longer it will take to get where I want to be. Ultimately I want to be making a living off my photography; the end goal would be solely working as a photographer. It will take a while, but I do believe in myself and I do think talent will overcome the obstacle of everyone being a “photographer” these days.

I’ve had a few shoots in the recent months, family, couples, maternity and a shoot with a friend and her horses. It’s been really fun and I’ve learned from each shoot. I don’t claim to know everything about photography; yes I went to school but I’ll always be learning or finding new ways of doing things. I’m basically just working towards expanding my art and getting my name out and work out there.

My mom gave me some of the best advice the other night. “You will attract the kind of clients you want by doing what you love”. My mom was a dog breeder for years, a well established one and never once did she advertise; people who were wanting what she had to offer came looking for her and her boxers. She didn’t have to advertise and her clients all appreciated what she did and were always loyal. It’s sometimes hard to understand that logic, but I don’t want to be a photographer for someone once. I want the customers that come back for each milestone; the clients who rave about me to friends and the people that seek me out. One day I’ll be there, for now I will continue to put in the work. I will continue to love my job and let that love for my job do the work.
If you have facebook please like my photography page; it would be a huge help. 
You can also visit my website; check the blog for recent photo shoots!
Thank you so much! 

Happy Holidays to everyone!

Thursday, 14 November 2013

Finally Ready to Talk About It;

I quit working for Lifetouch. The early mornings, the stressful days, the amount of lifting and dragging around equipment really took a toll on my narcolepsy. I ended up falling asleep at the wheel a month and a bit ago. I didn’t blog about it mainly because I was embarrassed, ashamed and down right mad at myself. I take pride in how responsible I am and how well I know my narcolepsy and myself. Falling asleep at the wheel scared me, and honestly made me question my integrity.
It happened on a Thursday. I was driving to work at 5:45am and I was tired, and next thing you know I am at my destination. I micro slept and that was bad. After the workday ended at Lifetouch, it was time to pack up and go straight to pick up the kids I nanny. Next thing you know I am slamming my breaks at a four way stop, just a big enough jolt to wake me out of the micro sleep. How did I get here, how long have I been asleep, what do I remember last? I was pissed, upset and confused. I always sense my sleepiness; I always know when to pull over. How could I have not sensed it and let it get this bad? I immediately flashed back to being 14 years old and waking up in random spots, random positions and thinking what the hell is wrong with me. The worst feeling in the world for me is honestly age 14. That was the most embarrassing, awkward and frustrating year of my life. I am now 20 and to feel that way again just feels worthless. It was just plain unpleasant. I got the kids, put them in the car and took them to swimming. I dropped them off to swim, and I now had 45 minutes to actually collect my thoughts and think about what I had done. I wasn’t ready to face my parents, I didn’t know if they would be mad, upset, disappointed or how they would react. I called my brother balling my eyes out like a baby. I am beyond thankful for my brother, never once has he let me down in any of my times of need. Never once has he judged me on my narcolepsy and he has always been the matter-of-fact guy. He calmed me down, asked me realistic questions. “What can we do to help your sleepiness”, “Has this happened before”, “Do you think it’s because of stress or lack of sleep”. Charlie really has a way of being straightforward to finding a solution and making me feel like I wasn’t an awful person for what I had done. After the conversation I didn’t have an actual solution, however I felt better, I had options and things to think about. Ultimately I decided that my job needed to be given two weeks notice and I needed to find a balance in my health. I love my sense of independence and no job or amount of money should jeopardize my license or the safety of others on the road.
From then on I told my parents and while I am not shocked at their response now…I was shocked when I heard their reaction in the moment. I don’t know why I feared telling my parents; I think it was due to the simple fact that I was mad at myself so how could my parents not be mad at me? Either way my mom felt bad for me; she said, “Well I am honestly not surprised. You have been busy and stressed and doing a lot”.  She felt bad for me, she understood all the things I wanted to be able to do, gave me some tips, reminded me I don’t have to be working as much as I have been. In a round about way she made me realize that all the stresses I have are not because of life, but simply because I chose to take on certain roles.
My fathers’ reaction was the “Oh shit”. The “that’s no good, tell me the story” kind of reaction. However his response that did make me feel better was that half the population who are without narcolepsy have probably fallen asleep at the wheel. He told me the stories of him back when he was driving trucks for different companies and how he’s ended up in the ditch. Hearing that normal people do it made me feel surprisingly better.
Ultimately I decided to quit, alleviate the stress factor, the early mornings and the long days. In the end I haven’t regretted the decision and I have realize things from it all. It happened, and yes it was bad and I wish I could go back and change my lifestyle prior to the event. However I have re-learned a valuable lesson about my narcolepsy. I have complete control over my life until I decide to give up control. For a brief while I gave up my control on my narcolepsy; I decided I could work early mornings, late afternoons and coach soccer in the evening when in actual fact I couldn’t and shouldn’t. Money is nice, but health is nicer.
I am happy with my current life. My new job in retail is full of fun and a positive work environment. I’m cheerful and my cheerfulness is being reflected in how well my narcolepsy is treating me these days.


Monday, 4 November 2013

Dear Diagnosis Blogathon

Dear Sarah,

All right yes I agree we need to change doctors this guy is a little to excited about having “found” me and rather excited to be around someone with “Narcolepsy”. Thankfully diagnosis day only lasts 24 hours and we can work towards finding a different doctor soon. Hang in there, I know you are not nearly as excited or feeling any of the same emotions as this guy breaking the news.

Stop and breath, that feeling you can’t identify…that’s relief. I know you feared having nothing wrong with you, or having nothing show up from the study, but here you are with the dreaded diagnosis and a sense of relief. You aren’t crazy, you aren’t losing your mind and you actually do have something wrong. Yes I know it’s an illness, it’s not curable yet, but hey knowing you have Narcolepsy at just age 14 is a blessing in disguise. The knowledge and diagnosis has arrived; it’s up to you now as to what you do with that awareness.

I wish I could be there to walk you through the transitions and changes you are about to face. Your parents; don’t fight them, those annoying nap suggestions and bed time reminders are because they have your health in their best interest. Trust me they realize how old you are; they don’t like reminding you anymore than you like hearing it. Friends will walk out of your life, but hang on tight because in time you will find amazing friends to lift your spirits and embrace your toughest days.

Don’t fight your narcolepsy; don’t pretend you don’t have it. Be honest with yourself and be responsible. You’re responsible for your health, so when you start that head bob, girl just give in and go find a couch, a bed, or the back seat of a car. The better friends you are with narcolepsy the nicer she is. She can be a real “B” word when you cross her the wrong way. Watch out for those famously fun and dysfunctional all nighters with your friends; watch out for that sugar high that comes with the crash. Narcolepsy will take your temporary fun and missed naps and take you down with her. Watch your back, she’s been known to stab.

If you take anything away from this letter I want you to take away the simple and utmost important thing in life…don’t let anyone or anything stop you from chasing your dreams and living your best life. Don’t let this Narcolepsy or Cataplexy in still a fear to live life courageous and daring just like you always have. Let that bold personality you have guide the way, make sure you don’t start believing what you read. All this “I can’t because I have narcolepsy” is the biggest load of $%#! you will hear.

You, Sarah are about to embark on a life changing journey that will mature you, strengthen you and shape you as a person. Take it one day at a time, take it with ease and let people in. Take this time to educate, inspire and change the way the world looks at narcolepsy. Change your world, change your life and you might just change someone else’s.

Love and Naps,

Sarah xx

Thank you to Julie Flygare for this wonderful idea. The reflection of how far I've come and the realization of the gains in the narcolepsy community since 2007 was empowering and uplifting. 

Sunday, 6 October 2013

Working for a Living Sucks;

Hopefully the girls will understand this analogy, guys…bare with me. You know when you are so busy and you finally get in front of the mirror all up close and you see your eyebrows and you’re instantly appalled at how you let them get that out of control? Well that’s how I feel about my blog. I last posted on my birthday August 31, which was kind of a while ago. It’s not like I haven’t had things to blog about, or things to talk about. I’ve just been too busy when I want to write and too tired when I find time to write.
Life’s kind of been a rollercoaster of long days, stressful days and an overall longing for the end of my jobs to come. December cannot come soon enough, my body needs a break and the weekends just simply aren’t enough. I’ve calculated that between working with Lifetouch as a photographer, the kids as a Nanny and now volunteer coaching a girls soccer team I am working between 45-55 hours a week. Monday to Friday sucks, I wake up to early and go to bed too late. 9:30om is my attempted bedtime in order for 5:30 am to be a somewhat nice Sarah…not the usual grumpy early morning Sarah. However with coaching, life and being 20 I can’t always make 9:30 perfectly. I’ve been sick with a sore throat plenty, and well who do I have to blame? Myself, for probably pushing my body more than it should be. I can’t complain I suppose, I have to make money somehow and I have been told I can’t live under my parent’s roof forever. I’m in need of finding a rich man to sweep me off my feet. I wish I were kidding.
I think I’ve been frustrated lately with my Narcolepsy. I always had this mutual understanding with it, and I was nice to my narcolepsy to get the most out of my days. Lately though, I’ve been thinking “Ok, I know I need sleep, but how am I suppose to balance sleep and working for a living?” This to me is an issue, a frustration and just a viscous circle. One day I’ll have the money to start my own business, buy all the equipment I need to be a photographer. In the mean time though how do I buy the necessities, save for things, and find time to continue building a portfolio? They say if you want something you’ll find a way, however I am sure that person didn’t have narcolepsy and probably could live or function off 5 hours sleep.
When December comes around, I am not sure what I will do, my contracts for my jobs are up and I have little desire to continue either of them. I guess I need to find an extremely well paying job, that is fast paced enough where I don’t get sleepy. 40 hours a week sounds easy to me right now, I’m just not sure where I can find a job that pays like I need it to in order to afford or do all the things I want to. I also have to take into consideration that I am only 20, I have tons of time to figure things out, I’m just thinking the future of working looks pretty gloomy at this stage. I need to find that balance so that I can stay healthy, and happy.
In other news, coaching is going well. The girls are great, and the parents are finally a group of parents that understand competitive sports, and want the best for their kids. Yes I am sure their will be the odd helicopter parent, however for right now…I am ecstatic to just be able to show up at practice and coach. Assistant coaching is a good fit for my current life. I don’t have to make decisions on tournaments, managing, money spent, food, etc. All I have to do is help the girls improve their soccer skills. It’s ideal in my current life; maybe in future I will try to head coach again.
Anyways, I best start packing my bags for the week, planning meals for the week and finishing laundry!

Saturday, 31 August 2013

Unite Narcolepsy

Julie Flygare has been a huge advocate and voice for Narcolepsy over the years, every time I check her blog she is always up to something exciting. Whether she's writing a book, running a marathon, or working towards helping the FDA understand narcolepsy she's constantly striving to better the lives of Narcoleptics. If you do not follow her blog and you are affected by Narcolepsy or interested in Narcolepsy I don't just strongly suggest...I insist you head over to her site and subscribe to her or at least bookmark it. You'll be constantly inspired by all she does, all she is and how much she truly lives her life to the fullest.

Julie Flygare: REM Runner Blog

She recently contacted me about a survey and spreading the word about an upcoming meeting help by FDA that was focused on further understanding Narcolepsy Patients. The survey, the meetings, and the more we spread the word the better chance we have at properly educating the FDA. With such a large blogging community I was hoping that a few of you could take the time to take a survey. The survey takes about 15-20 minutes and is for people with narcolepsy, people who know someone with narcolepsy, and of course people who are simply affected by narcolepsy. It's an opportunity for everyone to share their struggles, their victories and all that comes with naroclepsy. Narcolepsy is different for everyone and not one medication, schedule or lifestyle is the answer. With the help of our community coming together we can open doors for ourselves and create a brighter future.
Julie has written a blog that I have attached below which has more information than I could ever provide; go ahead and read more and please please please take the survey(also linked below).

Thank you for reading and thank you in advance for your participation. The narcolepsy community thanks you.

Sunday, 11 August 2013

Step in the Right Direction;

A lot has changed since I wrote that last blog, all changes for the better. I am finding myself to be in a really happy place. I wasn’t miserable or anything prior however this past month has been exciting and steps in the right direction.
I want to travel and would love to be traveling this September however I applied for a photography position with Life Touch on a whim and ended up with a new job. At first I was hesitant and wondered if I really wanted the job however it’s time I start working in my field and profession. The job isn’t perfect and I am taking 1250+ pictures of students in the same pose a week…however it’s the experience and the atmosphere of working around other artists/photographers that will be delightful! I started the training last Thursday and have one week left of that before we get to working in the schools and doing all the School Portraits! Two things I love all wrapped into one; working with kids and snapping pictures!
The job allows me to stay working with the family I have been a nanny for! The kids are in school full time starting September and won’t need me for full days anymore. I have chosen to continue on with them in the Fall with only working about 20 hours a week. I have surprised myself with how attached I have become to the kids. These two kids have changed my viewpoint on a lot of things and have really tested my level of patience. I see the positives of me being there for them and I have seen the changes in their behaviors and general happiness. I don’t think it’s fair to walk into a young child’s life and be such a big part only to walk away within six months. Therefore I will stay till December and then reevaluate. Whatever I do choose, I know I will try my best to keep in touch with the family as the years go by.
The family is on Vacation for the month of August therefore I have been pretty worry free up until last Thursday when I got the photography job. It was an absolute pleasure to sleep in past 6:30am. I have found since working such long/early days that I can no longer stay in bed till noon; 10:30am is about as late as it gets!
This upcoming month my brother is moving in with his girlfriend on more official terms. He has been living with his girlfriend in his girlfriends parents house, but now have found a townhouse together to officially move out. I have found his past living arrangements to be hilarious, more than odd… and too easy. I believe his gf’s mom does a bit too much for the two of them in terms of running a household. It should be interesting watching my brother adjusting to cooking, cleaning and doing all the household chores with his gf! Some entertainment for his sister! I have done a house-warming gift of a picture I took, printed on canvas. I also did a photo shoot with them last week and will share a few on this post!
Most of you know I coached a soccer team this past outdoor and quite enjoyed myself. You also might know that I found at times it to be difficult to enjoy due to parents. This fall/indoor season I have the opportunity to continue on and do it again. I’m kind of caught in a tight place; my head and my heart are having a tough time rationalizing what it is I should do. I love working with the kids, I love seeing them grow and develop as players and I also love the satisfaction it brings me. However these past four months were hard on my health. I was stressed out, emotional and often times just angry or annoyed. It was rarely due to the kids, it was always due to the parents. I think that’s why I am having trouble deciding. I want to do it for the kids, but for the amount of time and energy and volunteering it is…I have to ask is it really worth it? It’s a longer commitment for indoor and I would hate to commit and then have to leave because I end up losing my mind. I just don’t want to be letting anyone down, don’t want to let down the kids or myself I suppose. I guess I really just need to have talk with myself and decide what’s more important in my life right now. The kids mean the world to me, I don’t want to quit and have kids thinking I am quitting on them. I will be sitting down with the club director and seeing about options or changes that could be done to help ease my volunteering. At the end of the day it’s not paid time, it’s volunteering.
I am off for a slow pitch game with a bunch of friends, then home to bed so I can get a good nights sleep before work early tomorrow.
Wishing you all a wonderful rest of your summer!

Friday, 10 May 2013

updates far and few between;

Wow. Has it been a while or what? I would really love to be able to update you day by day with my life status, my coping mechanisms but my life is so damn busy lately. I am currently on a 5 day weekend since the family I nanny for went to Vancouver to visit grandparents. All I can say is THANK THE LORD. I need this weekend to sleep, to remain sane and get some personal appointments out of the way.
To update you on my schedule and why I feel so damn busy; I am still a nanny Monday to Friday generally working 11-6 now. I am head coach of an Under 12 girl’s soccer team. We practice Wednesday, Friday and have a game about 2 times a week usually Monday/Saturday. I also play soccer and my team has been playing Saturdays and Tuesdays but will soon move into a consistent Thursday night game. It’s busy and I hardly have time for myself anymore. I don’t nap during the week; I just push through the day. I have a tea everyday and that is my source of caffeine on top of the 54mg of Concerta. I stay active the entire day, either I am watching the kids at the park, cleaning the house, doing laundry or taking the kids to activities. The constant activities keep my mind running and I don’t even think about naps. I find the toughest days to be the ones where I have too much down time. Where there is not a ton of cleaning, and the five-year-old wants to play by her lonesome.
Either way I am getting through the days and maintaining a more than normal life. Sometimes I think I am doing more than a person without narcolepsy! I originally was terrified for summer and working because the kids would be out of school and 8-5 would become my new hours. HOWEVER, the family asked me the other day if I would be ok getting the kids at noon everyday from summer camps then hanging out with them till 6pm. Hell yes! I am more than okay with this, this means my hours stay practically the same and I can keep up with this schedule! There will be one week here and another week there where I am required to work 8-5, but I can mentally prepare for those weeks in advance!
In other news with my days off I am taking my days off to get my prescriptions refilled, my cars oil changed, my many errands out of the way, and of course to sleep. Saturday and Sunday I however am locked up in a classroom 10-5 learning new coaching skills. Although I am excited to take the coach, all narcoleptics know the fear that comes with sitting and listening to an instructor. Wish me luck! 

Monday, 1 April 2013

I think I am funny;

Well about a month ago I got a little tribute tattoo to myself. It's a simple little tattoo that has a significant amount of meaning behind it. It basically is a tattoo to acknowledge my success in life while living with narcolepsy, the challenges and the barriers I have overcome. It's a reminder of the good, the bad and the hilarious times that have come because of my narcolepsy. I am happy with where I am in life, what I have managed to accomplish, who I have managed to help and overall where I am headed with my future. I know I haven't beat narcolepsy but I like to think I have a mutual respect with my narcolepsy like they say..."keeps your friends close and your enemies closer". ;)
Feel free to laugh at my tattoo; I do. My friends describe it as perfect and very fitting... so I thought I would share with the narcoleptic world.
Have a good month.

p.s I realize this is posted on "April Fools"'s real i promise. :)

Tuesday, 5 March 2013


Well, as the weeks pass by I am starting to get in a routine and sleep schedule. I am finding the nights when I sleep and know I have to be up to go to work in the morning... Are full of insomnia. I am not sure if its because I know I have to be up and out the door by a certain time; if I'm anxious...It's been driving me nuts. I'm used to the waking up 5-10 times a night, but I never have had issues about falling back to sleep! I'm trying to calm myself before bed...writing in a journal and just winding down I suppose. Hoping it starts to help. It really is cruel don't you think? Us narcoleptics with insomnia!!
As for work goes, it's been going really good. I have yet to have a need to sleep on the job. I am exhausted and drained, but my eyes aren't closing without my permission! Monday I started the boot camp and holy hell! The instructor kicked my ass. It's been four weeks since I last worked out... Needless to say this workout of power lifting and blast cardio was a rude awakening for how out of shape I am! I am really excited about it being 3 times a week though, it helps me stay motivated to get back in shape. I also find the more I exercise...although tired I am not "Narci" tired. If that at all makes sense!
My days are now longer due to boot camp and coaching soccer. Boot camp is 9am, that means I'm up @ 8 and out the house by 8:30. Then I have 1 hour between workout and work...the family I nanny for has said I can shower and hang out at their house in between. Really kind of them and convenient for me! I work 11-5 or sometimes 6. Then 3+ nights a week I head straight to a soccer practice or a game. I then swing back home for a meal and a chance to have some time to myself. Criminal minds or some Modern Family!  
I am in bed no later than 11 as I need 9 hours sleep at least! The weekends I have been lucky and have been spending them sleeping in till noon. I need it, and although it may look lazy from my friends point of view... I really could care less. I don't want to enter the narcoleptic world so I will do everything I can to stay out! 
I have recently started up a website for my photography. Although its not 100% complete, feel free to take a look at it!
Hopefully I will find a way to turn my photography into Money and supplement my income. 
Any tips or comments about my website feel free to send me an email or leave a comment. Hope all is well with the narcoleptic families out there. Sleep well my friends.
Chat soon

Friday, 15 February 2013

Anyone still there?;

To anyone without narcolepsy who reads this my days of working a measly 6 hours probably sounds super easy and much of “living the dream”…to everyone who has narcolepsy you will understand my struggles.
I love being a nanny, absolutely adore the family I work for and all the fun activities I get to do each day. However working 6 hours straight with no break is a bit of a challenge. My day starts at 11:00am when I pick up the 5 year old at Kindergarten. We head home, eat some lunch and play whatever games she wants. We do crafts, we run around, we clean the house (I clean the house), and then we walk to the bus stop at 3:45pm to pick up her 7-year-old brother. From then on we have a snack, do some more crafts, they usually get in a fight, I break up the fight and then Mom or Dad gets home at 5:00pm. Those 6 hours exhaust me, I am absolutely drained at the end of it all yet I get in my car and scurry off to the gym. I work out for 1-2 hours, head home and eat some food. I then sit on the couch, or curled up in bed and go to sleep to do it all over again. Since it is February and there is a holiday here in Canada they have been having days off of school, those are the worst days. I wake up at 7:00am I leave by 7:45am and start work at 8:00am, and then I stay awake entertaining the kids until 5:00pm. Nine-hour days were never meant for narcoleptics but somehow someway I have been making it work. Eight hours seems more reasonable, I might have to bargain with the parents come summer time. Anyways, that is an update on what my life is looking like.
I also just had a surgery that I had been waiting on for years, literally years. I have broken my nose 5+ times and have neglected the fact that I have a deviated septum. I kind of had gotten use to the blocked airways and always breathing through my mouth. Not anymore, say hello to having open airways. It was minor surgery but it required me to be on bed rest for one week, no activities, no lifting anything over 10 pounds. It was nice at first, but boring after a while. Now I am just on week two of recovery but I can already notice a huge improvement. Hopefully in another week I will be able to test it out at the gym. I am extremely curious if I will get gassed (out of breath) as quickly as I usually do. Only time will tell!
In other news my life is rather uneventful as I work towards saving my pennies to both travel and possibly go back to school in 2014. I am looking forward to the next few months; many exciting events and experiences. I have been working with a U12 Girls Soccer team which is full of fun, interesting conversations and of course my favorite thing…Soccer. They are all really talented players and genuinely want to be there…which is always a bonus as an assistant coach. Come outdoor there is a chance I will be taking a larger role in coaching which to me is really quite exciting. I hadn’t thought I would enjoy coaching this much, but these kids make it fun for me to share my wealth of knowledge. Tomorrow I am off to a soccer tournament with them. I am sure it will bring back memories of a few of my first “away from home” soccer tournaments.
Come March things will be busy; I have joined a boot camp that is three times a week at 9am. It’s close to where I work so it is convenient for me to scurry off to work after. My U12’s also have an away tournament one weekend provided they continue to win games. I also have a women’s team that I play for and we will be away for a weekend in March. On top of this all my best friend from Minnesota (where I went to college) is coming for a 5-day visit. We have jam packed the mountains, the bars, and an NHL game into our schedule. I am extremely excited to have her come visit me; it should be one wild adventure!
I believe that is all for now, I am off to pack for the weekend and finish up a few other things I have managed to procrastinate.
Hopefully I will find time to start blogging more rather than having to write one big blog with one giant update every month!
Have a wonderful weekend.

Thursday, 3 January 2013

Questions and Answers;

A young soul emailed me some questions and while answering them I figured I might as well share the answers with the world!
Happy New Year!

1. How did you get diagnosed and how old were you? How did you feel?

In Canada high schools start in 10th grade, the summer prior to switching into high school I was super busy with soccer and was all around just exhausted. I would come home from soccer and fall asleep watching TV, I would nap every chance I got. Once September rolled around and I was back at school and in a new environment things slowly progressed. 10th grade involved more homework, it involved for hours of involvement; I found myself falling asleep in class and sometimes barely even making it to morning class. I still played soccer at a high level and was at practice nearly every day. My mother and I just figured it was the busy lifestyle I was living that left me exhausted. I went to the doctor about it and had a bunch of blood work done up to rule everything out; everything was normal. It wasn’t till I was on my way carpooling to a soccer practice with a teammate that my mother figured it out. Hannah, my teammate had made a complaint about her sleep the night prior; something along the lines of waking up more than once in her sleep. I was shocked and asked “well do you always sleep the whole night through?”. Her answer was like most people out there…Yes sleeping the whole night through is common; I was unaware and thought my waking of 5+ times a night was normal. My Mom put 2 and 2 together and within no time I was seeing a sleep doctor.

At the sleep clinic I was asked to have a sleep study (Polysomnograph); a diagnostic tool in which monitors your sleep habits and challenges. After sleeping over at the clinic I stayed the following day to have five twenty minute naps. I fell asleep in each nap and went into REM in all five. I was 15 at the time I did the test/study, and was diagnosed that next week with Narcolepsy. I can’t say exactly how I felt; I cried when my doctor told me because I felt a mix of relief and sadness. I was relieved to hear I wasn’t lazy or tired for no reason, but I was upset to hear that I had a chronic illness.

2. Is it difficult to manage your narcolepsy?

Prior to diagnosis it was impossible to manage my Narcolepsy; I was in survival mode and just going through the motions. Now with a diagnosis it’s rather simple to manage if I keep a healthy schedule. I have to make sure I get my rest, take my medication, eat properly, exercise regularly, etc. The more late nights I pull the harder my life becomes. If I decide to go out with friends one night and don’t get proper sleep, I will be playing catch up for a week. It’s difficult to be a young adult because there are lots of sleepless nights I would love to enjoy, but I have to pick and choose carefully.

3. How long did it take you to get used to the symptoms of narcolepsy?

I was already used to feeling sleepy and groggy all the time; I had to get used to feeling normal again! It took me a while at 15 to accept and understand narcolepsy. I often felt bitter towards the illness, constantly trying to test my limits and pretend I was just your normal everyday kid. It took me about a year to finally accept what I had and to work with Narcolepsy rather than to work against it. If I fight it my days are horrible; if I take care of my sleep schedule then narcolepsy is good to me and allows me to feel as normal as possible.

4. Does narcolepsy affect your social life? If it does then in what ways?

My social life is as normal as ever but I honestly have my friends to thank for that. Many of my friends at the time of my diagnosis stuck through and are still my friends to this day. They saw me at my worst, and saw how debilitating Narcolepsy can be without proper care. Often times we all nap together before going out, or they know if I say it is my bedtime they won’t fight me to stay up later. I suppose you could say my social life is affected in terms of how late I will stay out, or how long I will go see friends for. I however don’t think anyone would notice my social life lacking in anyway.

5. Is it difficult to work with narcolepsy?

Working is an issue for many…I have yet to run into any problems. I know my limitations and I pick my work strategically. I won’t work in an environment that doesn’t stimulate or interest my mind. If I am constantly on my feet and constantly needed somewhere than I find it rather easy to work 8 hours. However on the flip side, if the work isn’t interesting to me than I drift off into a rather sluggish mode just praying to nap somewhere!

6. Have you ever been discriminated for having narcolepsy?

I have yet to experience discrimination towards me due to my narcolepsy. The most I will receive is judgement on what I can and can’t do or sometimes people will even say I am lying. I have had coaches and parents of teammates question the truth behind my diagnosis. They all believed illnesses were in the mind and could be overcome if you don’t give into them…especially sleep! That kind of judgement towards narcolepsy really bothers me; I would love to see them feel the tiredness us Narcoleptics can feel at any given time.

7. Have you ever been excluded from any sort of activity for having narcolepsy?

I really don’t think anyone has ever excluded me because of my Narcolepsy. However when and if that ever does happen, it will only encourage me to prove them wrong.

8. What things on a day to day basis do you need to compensate for your narcolepsy?

On the daily I don’t compensate much, there isn’t anything I have to give up or avoid. Long distance driving is something I will never be able to do, but I don’t need to do it. When I was in high school I would compensate homework at times when I was way too tired to even think about completing it. I did end up finishing high school on time though and with good grades. Honestly, there isn’t anything in my day to day life that I need to compensate because of my narcolepsy.

9. When in a relationship (it doesn't have to be a romantic one) do you tell the person that you have narcolepsy?

95% of the time people know I have narcolepsy. I find no shame in it and often times people’s reactions towards hearing I have narcolepsy says a lot about the character of the person. The more interested a person is about learning the better. If someone blows it off and thinks it’s a joke or some fake illness, then chances are I won’t be hanging around the person for very long. I love answering questions about it to my friend and peers, I love educating the public. I don’t care if the person understands narcolepsy or not, I enjoy the people and admire the people who at least try to understand it. That’s all I will ever ask for.

10. Has narcolepsy affected your personality and your outlook on life?

I think my diagnosis forced me to grow up and mature a lot quicker. It gave me a new outlook on life…one that allowed me to be thankful for everything I do have. I believe that people are put through things because they are strong enough to handle it. I believe that this diagnosis gave me a chance to get my priorities in line and to be more positive about things. It was a wakeup call to better care for myself, but it also allowed me to find myself. I think after a year of fighting it I came to the conclusion that turning my Narcolepsy into something that was a good thing allowed me to be happier. I am thankful for such a young diagnosis because I don’t think my life would have stayed together much longer with the way I was living it.

11. Has narcolepsy limited your ability to achieve something you want to achieve?

If anything it has empowered me to achieve things; I now go after things in hopes of proving people wrong. It can be debilitating if you let it, and it can get in the way of some dreams but I have yet to find something it has limited me to do. When someone tells me I can’t do something, I usually go out of my way to prove them wrong and that’s how I feel about narcolepsy.

12. Has there been any hidden blessings with having narcolepsy?

I think my narcolepsy encouraged me to start writing; something I now love. Since sharing my life on my blog I have been blessed with meeting other narcoleptics around the world. I also have changed people’s perspectives on Narcolepsy and even inspired families that there is good in Narcolepsy. I don’t think there are as many negatives in Narcolepsy as the world portrays there to be. In any illness, being negative towards it doesn’t get you anywhere.