When Your Body Says “OH HELL NO” in Italy – Practicing Radical Self Care On The Fly

by julie on November 1, 2016

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I felt a scratch in my throat at Stanford’s Medicine X conference.  Flying to Italy, pressure spread across my forehead. Waking early the next morning in Bologna, a breeze swirled in through my open hotel window. I smiled and then I coughed… And coughed… And coughed.

It was official.

I was sick.

In Italy.  

How could this be? I never get sick. Well, besides having narcolepsy, but nine years into living with narcolepsy, I can juggle my narcolepsy symptoms, medications and side effects pretty well.

I rarely get flus and colds, but when I do, I shut down. The best analogy I can think of is that living with narcolepsy is like juggling 50 balls constantly and I’m just barely keeping it all going, but add one additional ball (like a cold or flu), and my coordination breaks down and I drop everything.

julie-flygare-out-of-spoons-in-italySo, here I was in Bologna, Italy scheduled to have four glorious days of vacation all to myself to explore this beautiful historic city before the narcolepsy conference began on Friday… and I was sick as a dog.

I rolled over in bed feeling bad for myself. How would I get cold medicine without speaking the language? Should I take my overnight narcolepsy treatment, Xyrem or nighttime cold medicine?

This seemed so unlucky and unfair to spend my vacation sick, but it may have been my body’s way of trying to tell me something…

See, going straight from Medicine X to Italy was a bit much. While at MedX, every second felt precious, as I was surrounded by healthcare advocates who I’m honored to call my friends and role models. So I over-extended my spoons and ignored my daily nap routine in order to maximize this healthcare conference experience.  All this, at the expense of my own health.

Ironic, isn’t it?

There are times when the narcolepsy advocate in me and person living with narcolepsy don’t see eye-to-eye. For the narcolepsy advocate in me, speaking engagements are my heaven, I consider speaking an art form and intellectual challenge that I live for and relish in. For the person with narcolepsy in me, speaking engagements mean long flights with increased motion sickness the older I get, radical time-changes I try not to think about, achy joints and bent spoons.

img_7437So, going from MedX to Italy, I think my body was finally saying, “OH HELL NO, Julie. SLOW DOWN!”

After falling in and out of fitful sleep, I finally dragged myself out of bed around 9:55 a.m. to catch the end of the free continental breakfast in my hotel. Then, I walked to the city center and stopped for a delicious cappuccino and biscotti at a cafe, but by 12 noon, my head entered a sleepy haze again and I zombie-walked back to my hotel dragging my feet. Once in bed, hypnagogic hallucinations flooded my internal stage quickly.

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I awoke to a *knock knock!* around 3:00 p.m., at first I thought it was a dream, but then realized it was the hotel’s housekeeper asking “Can I clean your room now?”

Having awoken as a beastly version of myself, I yelled out “Not now!” and promptly faded back into darkness.

I woke again around 4:00 p.m. Damn it! I’d basically slept the day away. And then it hit me:

Wait, why am I acting like I have somewhere to be?

I’m used to constantly pushing forward, between working full-time and running Project Sleep on weekends. So for once, I was totally free with no obligations and I could sleep all day if I needed to, and so what? Maybe I might miss a tourist attraction or two. So what?

One of my old running mantras came to my mind:

No one to beat. 

Nothing to prove. 

One step at a time.

So, for the next four days, I made NO plans. I listened to my body’s sick and jet-lagged rhythms. I let sleep lead my daylight dance. Sleep would’ve led anyway, but I stopped fighting it.

I practiced radical self-care and I’m proud of this, because it doesn’t always come natural or easy to me.

I ventured from the hotel lots – for gelato and pizza, for sight-seeing expeditions and museums, for cough medicine and cappuccinos, but I returned back to my hotel room often.

A few fun photos from my trip:

On Friday evening, my throat and energy levels were almost 80%  better. I greeted the narcolepsy conference guests with a genuine smile and positive spirit. The conference was a very memorable experience and I’ll write more about it in a follow-up post.

For now, I’ll close by noting that when I looked through all my photos on the trip home to Los Angeles, I realized that I’d somehow managed to visit everything in Bologna that I’d originally hoped to see. Despite having no plan, checklist or expectations, it all worked out to be an amazing trip, even while exercising radical self-care.

I hope this is a reminder-to-self for future conferences and trips, that I can and should slow down and step away sometimes. Maybe I’ll miss a moment or two, maybe not, but I am almost always a better ME when I have my spoons and sleep in order as best I can.

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Other international travels to share my narcolepsy journey:

{ 5 comments… read them below or add one }

Kelly November 1, 2016 at 5:51 pm

Glad you are feeling better! Self-care does not come natural, but it is the most important lesson our bodies constantly reteach!

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Kathy Devita November 1, 2016 at 8:00 pm

I want to comment, briefly as not to put you to sleep (no pun intended). As one ages with narcolepsy and cataplexy sneaky new challenges arise. After all, even with N and C we are still only human. Your story reminded me of a recent “discussion” with my grown child, who, also being human, still has strange misconceptions of how it is dealing with N and C, and all the other complications. These include the sleep loss, time lost, social activities lost, ambitious desires and good dreams squashed, recurring nightmares, anxiety, financial woes, etc etc etc., with much damage starting at 12 years of age and going on undiagnosed for about 40 years or so. I know I don’t have to tell you. You probably heard it all, too.
But during this “discussion” I finally yelled, “I did such a darn good job of getting thru a day, working and raising kids on my own that you have NO concept of what it took out of me, or how I really did it”!
I don’t even know myself.
Except I know I would have crawled to hell and back for my children and that got me to do things (often half asleep or exhausted). Alone now, except for my best pal, a little pug, there is little incentive to “do or die’ anymore.

Make sure to enjoy your life and use your special gift as commentator. You have done amazing things to make the world “WAKE UP” to ALL the problems with this “silent” illness. Thanks again. Sincerely Kat Devita

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Gail Pean November 1, 2016 at 10:57 pm

Great photos Julie and wonderful post. We all need to
Listen more to Our bodies that tell us when to slow down.

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karen allyn November 1, 2016 at 11:14 pm

You are such a great example and role model, just being you. I hope you are feeling better. Great post.

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Sherry Valle November 2, 2016 at 9:38 am

I too work full time and try to lead a very active life while battling Narcolepsy. But when I get a cold it destroys me. It takes me so much longer to recover than most people. We must listen to our bodies, that is for sure. Thank you for all you do and for being such a wonderful advocate for us. So glad you are feeling better and enjoyed your time in Italy.

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