The Ugly Truth About Getting Back In Shape

There is nothing romantic about getting back in shape.  I don't care how joyous the lady on the Weight Watchers commercials looks or how thrilling it is to buy new fancy workout gear. When you get down to ACTUALLY getting back in shape - it's a sweaty mess.

After I ran the Boston Marathon last April, I hobbled off of streets of Boston with my shiny medal and silver cape and rested comfortably on my laurels.  I patted myself on the back and said, "Good job, Julie, now you're a true athlete!" And friends and strangers alike patted me on the back and said the same.

Turns out, one's laurels is a cozy and hypnotic place to rest. The longer I stayed, the harder it was to get up and out running.  I told myself, "Who cares if I don't feel like going running today, I ran 26.2 miles the other day!" So, I ran sporadically over the summer and fall. I took the winter off completely... because well, it's cold. I'm afraid to admit, I think I fell asleep on my laurels!

Now, it's mid-January and I've awoken to find myself in pretty bad shape. My clothes aren't fitting comfortably.  Even worse, this time LAST year, I was out running 15 and 16 miles straight - no sweat (thanks to the handy log on the side of this blog for reminding me).

So, on Wednesday, I geared up in layers of warm clothing and went for a leisurely jog.  Eight minutes in, I frantically checked the time - worried I'd gone "too far."   I was less than a mile from home, yet my lungs were scratchy and hot, my mouth tasted like I'd been chewing metal, I was spitting and breathing heavily. My back ached. My arms felt like falling off.  I stopped and walked for 4 minutes and then went back to running. In total, I walked/ran about 3 miles - maybe.

Later, I attended Yogalates class, which helped me stretch out from my run, but also worked certain muscle groups that hadn't been worked in quite some time. In the middle of the night, I awoke with an excruciating charley horse cramp in my right calf. The next day, my entire body was sore to the touch.  Wow, what a warm welcome back exercise was giving me!

Yet, one of the best ways to get the lactic acid moving is..... more exercise!! So I will gear up today and go out to face the agony once again, knowing it will get easier with time, it always does. And crazy as it seems now, I will fall in love with running again, I always do.  All sensations, no matter how strong or uncomfortable, are transitory and will pass.  This is the greatest lesson I've learned from running, yoga and the discomforts I've experienced with narcolepsy.

"If you're going through hell, keep going!" -Winston Churchill

REM Runner versus the World Wide Web

HTML coding is not my idea of a good time.  Until about a month ago, the words - "Domain," "Server," "Hosting" and "FTP" were meaningless to me.  I never wanted to know about the cryptic inner-workings of the World Wide Web; I was happy to leave all this to the "computer geeks." All this changed about a month ago when I set out to design my own website.

At first, the project seemed "fun." Using a simple program on my Mac called iWeb, I picked out pictures and fancy fonts.  However, the excitement quickly faded when I realized I wanted my site to do things that iWeb didn't have pre-made boxes and pages for. Was I being greedy to want my site to play multiple videos on one page?  Could I make a "prettier" navigational bar than the one provided?

I searched google to find answers to my questions - and found Cedric Giger's iWeb FAQ, which has become my bible of sorts. Cedric's site and eBook not only answered all of my questions, but informed me that I could do more with iWeb than I ever imagined -- allow people to share my site on Facebook and Twitter? Yes, please! Set up a mailing list? Hurray! The possibilities were endless; all I had to do was follow Cedric's instructions meticulously.

I slowly built the pages of my sites with photos, links, videos, a mailing list and comment box. Cedric's treatise simplified things incredibly, but I still had to learn some HTML and basic web terms to individualize and publish my site.

Each step of the way, I was amazed to see things actually work! I ran into a few snarls, but eventually, after a month's sweat and tears - I logged onto www.julieflygare.com and saw myself smiling back from the web browser.  It was a moment of personal triumph. REM Runner versus the World Wide Web - I won, with Cedric's coaching!

I hope you will enjoy my site, especially the Videos page featuring a News Profile of my story of running the Boston Marathon 2010 - as reported by Meaghan Corson (major thanks to Meaghan for providing these videos for my site!). Please share on Facebook, join my mailing list or send me comments, I love hearing from you.

Adventures of the Sleepy Yogi Part II: From Hallucinations to Inner Peace

I woke up and slowly climbed out of bed, still wrestling with sleep.  A few minutes later, I woke again, much to my own surprise, still lying in bed.  Strange, I thought, I remember just getting up. Had I not gotten out of bed a second ago?  I couldn't be sure.  

No matter, I decided to try again. I lifted my head and torso up off my soft white sheets.  I looked out the window towards the front door for any sign of FedEx. I was waiting for an important package that I needed to sign for.

A few moments later, I heard steps outside and then knocking on the door. It must be FedEx with my package! I had to respond, but I found myself unable to move. I found myself, once again, still lying in bed.  This struck me as strange as I had a very vivid snapshot memory of seeing myself getting up out of bed just a second ago. How could this crystal clear memory be "wrong?" How was I STILL in bed? 


"Boom boom boom" - more knocking at the door.

I tried to sit up but my body clung to the bed with aggressive force. It was as if I was challenging the laws of gravity.  With full concentration, I pushed to lift my body, but it was no use, I wore a straight-jacket -  my arms, torso and legs completely unresponsive.

I looked up towards the window. I wanted to yell to the FedEx representative, "Don't leave, I'm here! I'm coming!" But my mouth wasn't working either.  Although desperate to get up - my head fell back into a dark spiral of sleep. Like falling in quick-sand, my consciousness was sucked downwards out of this world.

A little later, I broke free of the straight-jacket and finally sat up without trouble. I looked around the room. Dead silence.  Had I gotten out of bed those earlier times? No. Had FedEx come? No. Of course not.

As strange as it sounds - I no longer trust anything that happened around my sleep.  Although I saw clear pictures of my actions and I could still hear the exact knocking echoing in my ears,  I've learned that my very "real" memories are not what they seem.

As a person with narcolepsy, I frequently experience "hypnagogic and hypnopompic" hallucinations. These are strong visual, auditory and tactile (touch) hallucinations experienced upon going to sleep or waking up. I also experience sleep paralysis, which is the temporary inability to move or speak while falling asleep or waking up.

Yesterday morning's episode of hallucinations and sleep paralysis was not scary - just uncomfortable and annoying.  My head whirled between sleeping, dreaming and consciousness at rapid fire speed while my body lay dead as a corpse.  I was unable to tell what was happening from what wasn't.


Once TRULY awake  - I got up and went about my day. FedEx showed up about an hour later and  I had no problem  responding to the first knock at the door.  I was free - as my body's muscles and my mind's intentions were one again.

Fresh from a late-afternoon nap, I head out in the bitter cold wind to join a friend for a Yogalates class at Yoga District. I'd never been to this combination Yoga + Pilates class before and I was nervous and excited to try something new.

We started in a seated position with our legs crossed.  After finding good posture and closing our eyes, our instructor told us to, "Let your mind go blank. Whatever thoughts and worries are running through your head today - block them out."

I was slightly taken aback - as most Yoga classes I'd been to, we eased ourselves slowly from the outer world to our inner practice. This instructor wanted me to forget my day - cold turkey. Yet surprisingly, the transition was easier than expected.  I breathed in relaxation and breathed out hallucinations, sleep paralysis and the day's stresses.  In less than 30 seconds, my mind was clear and my body ready to work.

Although new, I kept up fairly well with the others.  I only wobbled a few times in warrior two twists. I even stayed awake through the final relaxation pose with the lights off! (I think the pre-Yogalates nap greatly improved my wakefulness during this session). Finishing class, my mind and body were connected as one solid trustworthy continuous unit.  Looking back on the day - it was strange to think how far I'd come - from fighting a straight jacket of sleep in the morning to glowing as I bowed my head to say "Namaste" at the end of class.

Yogalates was the perfect balance of stretching and strengthening for me - as it was less boring than a Yoga class and less grueling than a Pilates class.  I'll certainly be going back for more!

Click here to read Adventures of the Sleepy Yogi Part I: Meeting the Double Pigeon.

(NOTE: People without narcolepsy can have hypnagogic and hypnopompic hallucinations and sleep paralysis - these experiences are not unique to narcolepsy but happen much more frequently for people with narcolepsy. Normal people usually experience these when sleep deprived.)

Racquetball & Cataplexy

My boyfriend, Ben plays racquetball recreationally.  I'd never played racquetball before, but as a college squash player and a lifelong tennis player, I thought racquetball would be an easy transition.  Stepping onto the florescent white racquetball court the other night, both Ben and I predicted I may just beat him on my first try.  Yet we didn't foresee that my greatest opponent that evening would be something else entirely - Cataplexy.

I unwrapped the plastic packaging of my brand-new pink racquet, slipped on my attractive safety-goggles and hopped onto the court. I was excited for a workout and some competitive play. The time was 8:30pm.

Ben followed closely behind, tossing the ball in my direction.  I put out my hand to catch the ball off a bounce, but after the ball hit the floor, it leapt up quickly - like a toy bouncy ball.  I fumbled and missed the catch.  The ball's jump caught me off-guard, as a squash ball doesn't bounce nearly as high. And with this unexpected bounce of the ball came a tingling in my head and a slight weakness in my arms and knees.  I knew right then, cataplexy had arrived to play in our game.

Cataplexy is a form of temporary muscle paralysis usually brought on by emotions such as humor, surprise, annoyance or anger. Cataplexy is a unique symptom of narcolepsy - and the symptom that's given me the most trouble over the last four years.

All too often, when I laugh or I'm surprised or annoyed,  parts of my body give out on me. Sometimes this muscle paralysis is quick and unnoticeable - a slight buckling in my knees or my arms momentarily slackening.  On occasion, the muscle paralysis is total.

For example, a few weeks earlier, while watching television, a particularly funny television commercial brought on a large cataplexy attack.  My entire body fell out of my control and I collapsed sideways onto the nearby bed (luckily I was standing so close to the bed). I lay there unable to move my legs and arms, unable to speak or open my eyes for about 30 seconds. During this time, I was not in pain, but uncomfortable and scared by my shallow breathing. I tried to wait as patiently as possible for my mind and body to reconnect.

As soon as I sensed cataplexy on the night of the racquetball game, I told Ben.

"We don't have to play," he replied, his brow furrowed with concern.

"No, no, it's fine. I'm fine."

He wasn't willing to shrug off my cataplexy so quickly. "Are you sure?"

"Yes, we HAVE to play." We'd been planning this match for months, joking about who might win and placing bets with prizes for the winner.  Finally, the highly-anticipated racquetball game had arrived and I refused to let Cataplexy ruin it.

I threw the ball up in the air, reached my racquet back and swung hard - hitting the ball cross-court to Ben. He hit the ball back towards me. I re-positioned myself to return the ball but once again, I misperceived the ball's speed, completely whiffing the ball as it skipped out of reach. The ball was too fast and my racquet too short.  Feeling slightly surprised and annoyed, my eye-lids fluttered and the tingling in my head grew stronger - I was dizzy and unsure of myself.

I looked around the room - it was just a large white box with high ceilings and hardwood floors. I thought, I may end up on the floor-boards tonight.  If cataplexy got the worst of me here and I fell to the floor, nothing would brace my fall.  My stomach clenched with nerves.

"It's worse than I thought," I admitted to Ben.

"Really? We shouldn't play then," he stepped towards me. "We'll play another time!"

Although nervous, I couldn't bear to give up so quickly.  Maybe the mature and safe decision would've been to walk off the court and come back another day when cataplexy wasn't affecting me so strongly. I still struggle to know "what's best" - as I'm not entirely sure of my body and mind's mysterious moments of narcolepsy and cataplexy.

I closed my eyes, "No, I want to play now. Let's just hit the ball back and forth softly."

"Anything else I can do to help?"

"Yeah, just be calm... and no funny jokes please!"

Rallying the ball between us - Ben and I were silent. For the next twenty minutes - I didn't crack a smile or run after any short or trick shots.  My eyes traced a half-second behind the ball - my vision slightly blurry from the echoes of cataplexy still lingering in my brain.

This was far from the high-energy fun rivalry match we'd planned on, but as I adapted to my surroundings and the bounce of the ball - the foggy fear of cataplexy lifted and with it - my spirit. I began talking more and after about forty-five minutes, we played a mini-match -- best out of 3 points.

Ben won 2-1! I'm hoping he'll give me a re-match when I'm feeling up for it.  Although my cataplexy didn't necessarily "show" on the outside in this incidence, it still changed my entire perspective and experience on the racquetball court. I am very thankful for Ben's support and understanding.