Thursday, 23 October 2014

Advice; Take it or Leave it

I got a lot of questions from parents with kids about college and I did my best to answer how my experience was; I figured I would sum it up here and break it into the advice I would give you. My college experience was amazing; it was one of the best things I did for myself. Moving away from home, playing soccer and pursuing my interest in photography. For as great as the entire experience was I’d be lying if I said I didn’t have trouble managing my narcolepsy. Ask my mom or dad how many times I called them crying. She probably won’t remember the number but it was tough for me to balance school, soccer, health and a social life. I can’t say it was ever in a perfect balance, I felt that a lot of days I had to pick 2 and hope the other 2 wouldn’t suffer too much. My parents, each time listened and sympathized with me and at the end of the conversation they said. “No ones requiring you to do all that you are doing” It was always a reality check for me. I didn’t need to get an A in every class, I didn’t need to be on the starting line up for every game, and I didn’t need to be out every other night being social to maintain friendships. I was the one holding myself to this high standard and when I didn’t reach it, I was the only one who was suffering or who was disappointed in myself.

Apply for disability.
            If you don’t think you need it, step back reevaluate and think of the worst possible situation you might find yourself in and then go and file with the disability office. You might never use it, but your teachers will have a better time understanding you missing something, needing extra time or falling asleep if in their eyes you have always had narcolepsy. If you end up needing it and you’re not filed as disabled then you will look like you are just making up some random excuse when something does come up. Also note takers can be a huge saving grace for studying, reviews, and just as a general help to you doing well in class.

            Some teachers are sadly no longer interested in their students’ education let alone their health. After the first day of every class I registered for, I took my professor aside said something along the lines of… My name is Sarah, I have a rare sleep disorder called Narcolepsy. It’s a medical condition that can cause me to fall asleep randomly. I am hoping it’s not going to be a problem in your class, however if I am to fall asleep during class I want you to know that I’m not doing it to be rude or disrespectful. I would like to be woken when I do sleep, but would appreciate your help in making sure it’s not done in an embarrassing way. If you have any questions about it or concerns please feel free to ask me about it at any time.
Usually my teachers were extremely understanding, asked a few questions and then moved on. However I did have the odd teacher that just blew me off and it was like K sick, kind of busy here. Not much you can do about those teachers, it will cause you more harm and disappointment trying to educate them on something they are choosing not to come to terms with.

Meal Plans (If you’re away from home)
            If your college has an option for a meal plan, even if it’s not the full meal deal but so many things per semester I would highly recommend it. I found I was so exhausted in between practices/classes and homework that I would pick napping over eating and I was rather unhealthy. Having the meal plan option could ensure you are eating on days where it’s just not physically possible to make yourself a sandwich.

Smart Schedule
            If you’re not a morning person and that’s where your main struggles are, do yourself a favor and don’t sign yourself up for the 3 hour 7am class. You’ll never make it consistently and you’ll waste your money. Don’t schedule classes from 7-5 with no breaks if that’s not a time frame you’re ever able to stay awake for without naps. I took a few evening classes to help with having breaks for soccer practice/naps and maintaining my sanity. I also took a few online courses so that I had the luxury of having a day off in the week for catch up.

            I know it’s common to go to college right away and figure out what it is you want to pursue, but I highly recommend that you don’t go unless you have a motivating factor. You’re not going to want to do your homework let alone show up to class if you feel like it’s not something you’ve got strong interest in. I wanted to play soccer, and I loved photography as a hobby. If I didn’t show up to class or got bad grades, my coach was getting an email from my professors and I wasn’t going to play. I was beyond motivated to get those grades so I could play in every game.

Social Life/Party Life
            Parties are fun, drinking is fun, being social is all part of the big college experience. However it’s not a requirement and can really set you up for failure. That party where you stay up till 4am will all be a blur years from now, but that class you don’t show up for because you were out late will stick with you forever. I’m not saying don’t party, don’t be social but pick and chose your nights and you can go to a party for an hour, not drink, and leave. If they’re friends worth keeping they will be happy you showed up and will be understanding of your choices. Be smart about whom you drink with, whom you party with and how much you do it. It really takes a toll on your narcolepsy.

            For me this was a huge one, I moved countries to attend school so if something came up I couldn’t do much of anything until I was home for the summer or winter break. My doctor was a gem about it all, sent me with a letter explaining my diagnosis, and also a complete copy of my sleep study. That way if I got into an emergency situation etc I had a copy of my sleep study, a copy of the meds I take and of course a letter to contact my doctor etc.

All these factors are in no way shape or form rules you should follow, they’re just more or less things I found helpful in my college experience. Some things work for people that don't work for others, figure out what is best for you. I had much success despite the struggles I had with narcolepsy. I graduated Photography with a 3.6 GPA and also managed to get a certificate in business management. On top of my academics I was an All American athlete two years in a row. For anyone who doubts being able to finish college, I’m living proof that finding the right combination of everything related to your narcolepsy can leave you having success.

Monday, 20 October 2014

Narcolepsy Network Conference Denver

“I love my narcolepsy. It makes me unique and it’s kind of hard to be different in today’s world” Said by a 17 year old guy, and honestly he sounds like the male version of myself when I was his age. It’s been a spectacular weekend full of conversation that uplifted me and verified why I came.
I had forgotten how much chaos there was leading up to my diagnosis and how funny certain moments in my life have been. It’s been a good reminder to continue to laugh at myself, my narcolepsy and this blessed life I am living.
I’ll be completely honest, for how many seminars were going on I managed to get my ass to the bare minimum. I think I sat down for a total of 3 actual guest speaker related seminars. The rest of the time I was off meeting other young people with narcolepsy, exploring Colorado or enjoying a beer with a new found friend. I don’t think I really came to the conference to sit in and listen to people talk about what it is I have. I don’t have that many questions in my current life. I don’t think I was looking for any confirmation that what was happening in my body was happening in others. I just wanted to meet people, relate to them and enjoy conversations about life and where we are headed. I got more than what I expected out of the weekend. I’m walking away with more friends, friends who might experience things before me, talk me through the highs and lows of my future and all around just get it.

So thank you to all of the wonderful people I met, connected with and shared the experience with. Chances are high I’ll be in attendance in Minneapolis next year.

Friday, 17 October 2014

Denver Narcolepsy Network

I went from being extremely busy to being ridiculously busy. I picked up Jinx on Tuesday the 7th and have had the best 10 days with her. Yes I have to wake up throughout the night to let the little 9 week old bundle of joy go to the bathroom. Yes I have to wake up early to feed her and yes I literally can’t leave her unattended, but no…no I am not annoyed by her or inconvenienced by her. I love that little puppy more than I ever thought I could love something. I am certainly going to miss not seeing her for the next 4 days.
Narcolepsy Network Conference is in Denver, Colorado this year. I managed to find a reasonable flight (Canadian flights are never that cheap) and I saved a few pennies over the past months as it’s something I really wanted to do. I can’t really find a definite reason as to why I want to attend, I’m really not in any dysfunctional time in my life or time of needing support.  Sometimes I almost feel guilty even writing this blog because I know how many people haven’t found the right meds, right job, right friends, and sadly don’t have the same supportive family as I do. I have what I would call a damn near dream life. I have my dream job, my meds work near perfect, my bad days really aren’t that bad, and my friends and family get it to the best of getting it abilities. My major concerns are within financial goals, but I’m only in year one of my business. It’s not like I am unable to afford rent, food, transportation or any of the necessities. A lot of what I read on the support group are people in desperate times, losing jobs, unappreciative doctors, bad combinations of medications, and horrible experiences. I feel awful for each and every one of them because they’re in such a negative place and I was once in that place too… only I experienced those dark times and moments when I was 13-16 years old. I was given the opportunity it figure my narcolepsy out at a much earlier age and at an age where I wasn’t supporting anyone or even myself.
I suppose what I am getting at is I am feeling rather indifferent about this conference. I think it will be amazing and uplifting to meet others with narcolepsy who are older than me, younger than me and especially around the same age as me. I am excited to attend the seminars to learn more about this crazy diagnosis we all seem to be stuck with. I just suppose I am a little worried it might be a negative experience if most of the people have a negative feeling towards their narcolepsy. I am in a good place in my life right now, and I guess this conference is more for me to support others with their narcolepsy than it is for me to get support in my life.
Excited to meet you all!