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.