Narcolepsy & Exercise: Narcolepsy Awareness Video #17

by julie on May 22, 2013

As a person with narcolepsy, a sleep disorder or chronic illness, what’s your take on exercise? Too tired? Crucial to your health? Improve your symptoms?  

My latest video explores my experience as an athlete with narcolepsy and offers tips for successfully incorporating exercise into your life.

Come back for more videos soon! Thank you to Alex Withrow for his expert video production.

Watch full video series

Watch Video #19: Riding the Waves of Narcolepsy – Waterskiing with Cataplexy
Watch Video #18: Unveiling my Narcolepsy Infographic
Watch Video #16: Debunking the Narcolepsy Myth

Watch Video #15: Narcolepsy Chosen for FDA Initiative

Watch Video #14: Tips for Students with Narcolepsy

Watch Video #13: School Accommodations with Narcolepsy
Watch video #12: National Sleep Walk 2013
Watch video #11: Being Your Own Health Advocate 
Watch Video #10: Hypnagogic Hallucinations and Sleep Paralysis
Watch Video #9: Why I Wrote a Memoir: The Evolution of Wide Awake and Dreaming
Watch Video #8: Introduction to Wide Awake and Dreaming: Author’s Interview 
Watch Video #7: Talking about Narcolepsy during the Holidays
Watch Video #6: How Do I Handle Narcolepsy Diagnosis
Watch Video #5: Communicating about Cataplexy
Watch Video #4: What is Cataplexy?
Watch Video #3: Communicating Invisible Symptoms
Watch Video #2: Excessive Daytime Sleepiness
Watch Video #1: Introduction to Narcolepsy 

{ 3 comments… read them below or add one }

Jennifer May 25, 2013 at 2:56 pm

Dear Julie,
Thanks so much for your video on narcolepsy and exercise. It must have been a difficult transition for you to lose such a big part of your life while adjusting to your diagnosis and adjusting your lifestyle with narcolepsy. I am so glad that you have found that balance and that narcolepsy hasn’t prevented you from doing the things you love and being healthy.
I was diagnosed when I was about 11 but there are plenty of sleepy stories all the way back to my early childhood. Although I don’t think I would have ever been a natural athlete if I had developed narcolepsy later in life, exercise is something that has been an ongoing battle in my life as I am often just too tired after a long day of work. But I have been working harder lately – trying to run more and train for a 5k as excercise does make me feel better and I am really learning to enjoy it more now. I love yoga too and have some crazy stories about napping and vivid dreams during shivasinya.
One of the things that I find most jilting especially in the winter, is that I often need a nap after I get home from work to then feel like I have the energy to workout. And especially at the end of the day, a 10 -15 min nap which is rejuvinating in the am or lunch time for me, is not enough restorative rest at the end of the day. The end result is that I eat after my nap and then am not ready to workout until 7 or 8pm. This works ok in the spring and summer, but is hard in the winter. I have also found that sometimes I just need to get out and do it at the end of the day right after work ( I often go for a run/walk from my workplace) and that gives me more energy and I can just go to bed earlier if I need to and not take nap. But it is certainly a juggling act from day to day.
Thanks so much for all the work you do. You are such an inspiration and you have helped me find a new source of empowerment in my life after several years of not connecting or even know anyone else with narcolepsy.
Thanks again,
Jenny

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julie May 25, 2013 at 3:15 pm

Hi Jenny, thank u for checking out my videos. I’m so sorry that you’ve had narcolepsy for so long. Hang in there and know that I’m cheering for you.

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jill October 25, 2014 at 6:06 pm

Hi Julie,
I too have narcolepsy and was officially diagnosed when I was 24, nearly 20 years ago. I really struggle with exercise. I love to get out and do things, but after doing an activity, often within in minutes of sitting down afterwards, my body wants to crash (especially so if the weather is warm and I’ve been sweating a lot). So, unless I’m doing something in my own house/yard/neighborhood, I have to make sure I will be able to safely crash out for 20-40 minutes afterwards. Going to a yoga or exercise class that is more than 5 driving minutes away from my house is not doable unless someone else is driving.

I just discovered your website and it really is wonderful. I do my best to explain to close friends and family about narcolepsy and how it affects me, but they don’t necessarily take away what I hope them to and I think that is because of the ways narcolepsy is depicted on TV, in movies and other media. Some friends say they are hesitant to call me because they are afraid they are going to wake me up when I’m napping or they try to keep me awake when I doze during a movie (like I have a concussion or something), but I really just need to nap for 5-15 minutes. Another scenario I run into occasionally is when someone surprises me, not realizing it’s really uncool to surprise or startle someone with cataplexy (although my cataplexy is normally relatively mild).

Thank you so much for this resource and all of your work towards narcolepsy awareness. I don’t personally know anyone else with narcolepsy and it is hard not having someone else to talk to that shares the day-to-day challenges of the disorder.

Thanks again,
Jill

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