REMRunner in the News

I'm so honored to be featured in the Boston Globe health section today. (Check out: "A Race With Sleep" by Elizabeth Cooney, March 29th, 2010.)

If you're new to my blog today, welcome! Feel free to explore, but if you'd like to read more about narcolepsy and cataplexy affecting my life and training  - I'd recommend a few of my favorite posts:

From Where I Stand
Dangerous Laughter
Why Not Today

Thanks for stopping by! Please feel free to leave comments, I love to hear from my readers.

The Upside of Slowing Down

Still recovering from the tendonitis in my knees, I’m training with 30-40 minute run/walks. Although this isn’t exactly what I’d like to be doing less than a month before the marathon, I’ve decided to take this opportunity to incorporate something else into my routine – photography.

You know what they say about life – you need to stop and smell the flowers every once in a while. Now I’m able to do this – quite literally – at my new “run/walk/photograph” pace. With DC’s trees coming out in full bloom this past week – I’ve been able to capture a few nice shots to share with you today. 

 

Now, DC’s famous cherry-blossom season is just around the corner, so I hope to take some more photos to share here soon.  Also, if you'd like to see more of my photography – check out my new website: www.julieflygarephotography.com. Many of these pictures, including the ones from Paris and Boston, were taken while I was out run/walk/photographing. It’s a great way to get around!

What's Sleep Got to Do With It?

For most of my life, I actively ignored sleep to get the most out of my "life." I relished in my ability to burn the candle at both ends - although I never saw this as an "ability," I saw it as a small sacrifice to pay (a few less hours of idle snoozing) to fulfill my many different aspirations of being a good student, athlete, friend, and family member. I thought I could do it all, and I pretty much did.

However, once I was diagnosed with narcolepsy, I began to learn a lot more about sleeping, dreaming and how it all works. It's actually quite fascinating - both what's "right" about normal sleep and what's "wrong" with my sleep now.

Caution: this is a simplistic overview and not meant to be in-depth nor guaranteed to be 100% accurate. I am not a doctor. Quite the opposite, I received my lowest highschool grade in Honors Biology and never looked back. This is sleep science, watered down with a touch of sugar. If you'd like the real deal, I'd be happy to recommend sources that I read to reach my current understanding. Also, “the truth” in science is always evolving - especially in neurology where new discoveries still take place every day. So here's my version of the story.

There are two basic forms of sleep: non-REM and REM sleep. Non-REM comes first – taking one from “light” sleep to “deep” sleep in about 90 minutes (from stage 1-4). During this time, the body gradually quiets down – as heart rate, breathing and brain-waves all slow considerably. After about 90 minutes of this deepening and quieting, the body switches into REM.

During REM sleep, heart rate and breathing are irregular; distinguishing rapid eye movements take place; and the brain becomes quite active. (In fact, the brain in REM sleep is as active, and sometimes even more active, than the brain during wakefulness.) Thoughts and emotions flow through the brain, believed to make up the basis of our dreams.

Significantly, it’s only in REM sleep that one loses control over one’s muscles – temporarily paralyzed. It is believed that this temporary paralysis protects us from acting out our dreams, which would be quite dangerous.

After about 10-20 minutes in REM, the body regains control over one’s muscles and re-enters non-REM sleep, beginning the cycle all over again. Although unconscious throughout the entire experience, one passes through this elaborate cycle of slowing down and speeding up, sleeping and dreaming, paralysis and non-paralysis, multiple times over the course of the night.

To this day, scientists are unable to pinpoint exactly why we need both this non-REM and REM sleep. For ages, people have asked  "why do we dream?" The jury's still out. However, it is important to note that a lot of what we do know about the proper functioning of sleep was discovered through the study of narcolepsy.

Narcolepsy is a neurological disorder of the sleep/wake cycle, and it is believed that some (if not all) of the symptoms of narcolepsy are aspects of REM sleep being triggered at inappropriate times. For example, people with narcolepsy often enter REM sleep directly upon falling sleep, even though a “normal” sleeper doesn't enter REM sleep until after 90 minutes of non-REM sleep.

Perhaps the most fascinating example of disassociated REM sleep is the symptom of “cataplexy.” As mentioned in a previous post, there are times when I cannot make it from one side of the room to the other without collapsing to the ground. This “collapsing” is the pathological equivalent to the temporary paralysis of REM sleep, only inappropriately taking place while I’m awake and conscious.

Cataplexy is often triggered by emotions such as laughter, humor, anger, or annoyance. Some scientists believe that the brain misinterprets these emotions for the emotions passing through the brain during REM/dream sleep and triggers the temporary paralysis. Although I may not be able to move for 15-20 seconds during “cataplexy,” my brain remains conscious and I’m fully aware of my surroundings. You could say, I am experiencing a strange version of being both “wide awake and dreaming.”

In a future post, I'll discuss another fascinating experience of being both awake and dreaming, but I think this is enough science for one day. Please feel free to leave comments and questions below. As always, I love to hear from my readers and I'm happy to answer any questions!

Under Dark Ominous Clouds

After a week of vibrant summer-like weather here in DC, the weekend arrived, and with it, a bubble of sheer gloom. I’d like to say it rained all weekend, but I never actually saw it rain –only felt a constant spritzing of moisture in the air. Without any direct sunlight – the city felt like a old-fashioned black-and-white version of itself. It was in this dark ominous film-noir setting that I set out on Saturday for a modest, yet apprehensive 30 minute walk/run.

A month ago, I could have run 30 minutes in my sleep. As I wrote in a previous post, these shorter runs became “a comforting and stress-relieving part of my winter routine.” However, in recent weeks, with the flair-up of tendonitis in my knees, my ability to run even the shortest of short distances has been called into question.

Last Tuesday, in the bright sunny summertime weather, I attempted a 30 minute walk/run – rotating between 4 minutes walking and 4 minutes running. However, after only 20 minutes, I felt pressure under my knee (the telltale sign of my tendonitis) so walked the rest of the way home. Sure, this was an improvement over feeling pressure within the first minute of my run (as I had experienced the week before), yet it was still discouraging.

Thus, although I was only attempting another 30 minute walk/run on Saturday, I felt as nervous as if I was leaving home to run a full marathon.

I’m happy to report that I never felt any pressure under my knees during Saturday’s walk/run. So, although the weather couldn’t have been any more depressing, I ran (and walked) with my head held high! At this timid pace, I barely broke a sweat, so actually enjoyed the spitting rain, as it mimicked the effect of sweat and almost tricked me into thinking I was getting a good hard workout.

This certainly wasn’t how I pictured things going – being only 5 weeks from the marathon and writing here that I’d successfully walk/run 2.5 miles! Nonetheless, I’ve never been so proud to record my workout into my “Marathon Training Log” at the side of this blog. Perhaps my S.S.R. routine is paying off after all...

Something Worth Fighting For

I must admit that yesterday, for the first time, this experience brought me to tears. I’m usually incredibly poised, but yesterday I lost it. My feelings were just too strong. Here’s what happened.

Given my recent flair-up of tendonitis in my knees, I’ve had to cut back almost entirely on my running to concentrate on my rehab. My physical therapist has designed an elaborate routine for me to do every day to hopefully get me back to running in time for the marathon.

I call this routine my “S.S.R.” (Stretch, Strengthen, and Roll). Yesterday, I cleared the living room floor, plugged my marathon mega-mix into the room’s speakers and dutifully began my S.R.R. routine.

As I’ve written previously, I hate stretching. So, after about 30 minutes of stretching, I was glad to turn to my strengthening exercises. But now I know that if there is anything I hate more than stretching – it’s strengthening. My hip muscles were so weak that they literally trembled uncontrollably as I performed the exercises designed to strengthen them.

So after about 20 minutes of pathetic shaky strengthening, I was thrilled to move on to rolling around on my styrofoam log. What could be more relaxing than this? Piece of cake. Walk in the park.

The rolling is supposed to loosen tight spots in my legs. My physical therapist has taught me four different exercises to help my legs. I’m supposed to roll in each of these four positions for about 2-3 minutes each, and when I find a “problem spot” I’m supposed to stay on that spot for about 10 seconds.

I was on the last of my rolling exercises when I found a particularly strong "problem spot." As I leaned into the tightness, I huffed and puffed. I stared at the seconds on my stopwatch, wondering why time can’t fly. I tried to un-furrow my brow; I tried to think happy thoughts. This is good for you, Julie. This is good for you.

Intellectually, I know that this dull pain is bad ugly tightness leaving my body, yet in the moment - that didn't make it hurt any less.  I felt nauseated and lost my ability to process these feelings with my usual even-keeled patience. Tears began streaming down my face.

When I finished this last exercise, I stopped crying, mostly because I was just so thankful S.S.R. was done for the day. I rearranged the living room furniture and put my styrofoam log away for the day.

Just now, I’ve cleared the living room in preparation for today’s S.S.R. However, as I continue on, I want to make one thing perfectly clear: if I were running this marathon “for myself,” yesterday would have been the end of the road.

I don’t say that lightly; I gave up running two years ago when faced with similar rehab for the same tendonitis in my knees. What’s the difference this time? I have a reason to move forward that’s much bigger than just myself. Narcolepsy is more than just “a cause” to run for. It’s the sole reason I’m running...and stretching, strengthening and rolling. Right now, I’m out of my comfort zone and I don’t know what will happen. Nonetheless, I strongly believe that running the marathon for narcolepsy is something worth fighting harder for.

I think I'll go to Boston...

With 43 days until the marathon, I traveled to Boston this past weekend for the Wake Up Narcolepsy marathon fundraiser, hosted in support of the four women (myself included) who will be running 26.2 miles on April 19th, 2010 towards finding a cure for narcolepsy.

I was excited to be back in my old stomping grounds of Boston - if only for a quick trip. The day of the fundraiser, Saturday March 6th, was absolutely picture-perfect beautiful. Although multiple Bostonians reassured me that this was the first “nice day” since last fall, it was impossible not to fall back in love with Boston on such a day.

Before attending the fundraiser in the evening, I spent the late afternoon hours wondering around Back Bay and the South End with my sister. Almost everything was exactly as I remembered it from back in September 2009, when I left Boston for DC. Yet, there was something slightly different about Boston now – or rather – something different about me.

Walking down Boylston Street, I noticed a thick yellow line painted across the pavement. I looked up to survey exactly where this line was in relation to everything else. The line crossed Boylston right in front of the Boston Public Library, just outside Copley Square. Given this location, it quickly occurred to me that this was the finish line of the Boston Marathon! I’d walked by this very spot hundreds of times and perhaps I’d seen the line before, but I certainly never gave it much thought. On this day, it meant much more.

For some reason, I wanted to stand on the line to see what it felt like. Although Boylston was bustling with traffic, I waited patiently for a break in the flow and ran out into the middle of the street. I turned back around, opened my arms and smiled for a picture, taken for me by my sister (great work, sis!). After only a few seconds, the stream of SUVs and Cabbies resurfaced, and I scurried back to the side of the street – while being honked at by one particularly impatient taxi.

Looking back at the picture now, I can’t help but wonder, “Why was I acting like such a silly tourist in the city I call home?” Maybe the warm weather got to my head or perhaps it was the past seven months I’d spent away in DC. There’s no good explanation really...

However, I will say that while standing on that line, arms open towards a golden sunset in the distance – I could have cared less what anyone thought of me. I am so proud to be running the marathon for Wake Up Narcolepsy and look forward to – hopefully – fingers crossed – stretching my arms out again in this same spot on another afternoon in the near future. Only next time I stand there, I hope to be greeted with much more noise and ruckus than just one flimsy taxi horn!

Later on, I made my way to the Vault in the financial district for the fundraiser. This Wake Up Narcolepsy event featured a DJ, appetizers and an exceptional raffle. We had an incredible turnout and I’d like to thank all those who came out to support me and the three other WUN marathon contenders - Monica, Crystal and Becky.

I’m proud to report that with our attendees’ generous support, we raised $2,500 towards our marathon efforts! Also, I’d like to thank Kevin for planning and hosting this wonderful fundraiser. I look forward to being back in Boston in just 6 weeks for the race of a lifetime!

These Hips Don't Lie

If you happen to be in the Dupont Circle area this afternoon, you might have seen the REM Runner out and about. But I wasn’t running. No, I was walking. In the rain. Carrying a 4 foot white styrofoam log-shaped roller tucked under my arm.

This gigantic styrofoam log is part of my brand new treatment plan that I’ll be following in the months to come to combat the tendonitis in my knees. Although I thought I had my tendonitis under manageable control, I began experiencing pain under my knees in last couple miles of my 18 mile run. After that, I tried to continue running cautiously, but it actually continued to get worse in my left knee to the point that I haven’t been able to run in almost a week now.

This has been extremely frustrating. I’m supposed to be overcoming narcolepsy to run this marathon, yet my knees are giving me the most serious trouble right now. I’m tempted to change the title of my blog to: “REMRunner: training for the Boston Marathon with narcolepsy and tendonitis.”

Today, strolling the streets of DC carrying this gigantic Styrofoam tube under arm, I couldn’t help but wonder – how did it come to this?

Running used to be this simple thing for me. I just went out, got sweaty and returned home – end of story. There was no stretching, no strengthening, no icing, no GU packets, no protein-carb balanced diet. Now, running involves so many more factors. In a way, I feel like I’m in a relationship with running and things just got “complicated.”

Maybe you’ve been in a relationship like this: for the first five months, everything went extremely well. I was foot-loose and fancy free - building up mileage towards my marathon goal with ease. Sure, my body had a few minor complaints, but nothing too problematic; no red-flags. For the most part – we got along great.

During these early months, I was on cloud nine with running. Dare I say, I fell head-over-heels in love with it. Because of running, I felt stronger and healthier than ever – thus the benefits of this relationship heavily outweighed any difficulties or sacrifices. Even the winter weather didn’t feel quite so miserable, so long as I had running.

Yet five months in, I attempted to take this relationship to a more serious level (of running 18 miles) and everything fell to pieces. Maybe it was all too good to be true. Perhaps I was living in a dream world to think that my knee issues had simply disappeared into thin air. Regardless – things are now much more complicated and it’s time that I face the music.

Thus, with less than seven weeks until the marathon, I’m entering a new phase of my training. I visited a physical therapist today and together, we created a new schedule of exercises and stretches to hopefully restore the proper functioning of my knees so that my tendonitis doesn’t further impinge my training.

Turns out, there are two major factors contributing to my knee problems. First, my IT bands are too tight. I’ve always known this but didn’t know what else I could do to combat this besides a few stretches. This is where the foam roller comes in. In addition to my usual stretches, I will be rolling my IT bands across this styrofoam log every day to loosen them up.

My second problem, as identified by my astute physical therapist today, is that my hips are extremely weak which is putting extra strain on my knees as I run. I have a new hip-strengthening exercise to improve this problem. The first time I tried this exercise, my legs began shaking uncontrollably after a few repetitions. Strange that my legs could be so strong in some areas yet so extremely weak in other places. But, as the great Shakira once said, “These hips don’t lie… So be wise and keep on, reading the signs of my body.”

Returning to my apartment building today after physical therapy, new Styrofoam log in tow, I was happy to see a friendly face at the front desk. My Kenyan doorman, Freddy, inquired about the object under my arms. I explained that this torture-instrument was to loosen my legs for my running. I admitted that my knees weren’t doing well and everything was a mess right now.

Freddy looked at me with steady eyes and said, “I can tell that you will complete this marathon.”

For some reason, when he says something like this, I believe him. I don’t know why, but I get the feeling that Freddy doesn’t just spout out compliments and predictions for the hell of it.

I thanked him for his belief in me. He reiterated his point, “Yes, you will complete this marathon… You may not come in first, but... second. You’ll come in second. I’ve already predicted who will come in first!”

And with this, we both broke out into thunderous deep-belly laughter. We’d come full circle and once again, he was implying that a Kenyan was going to beat me. I would have resisted, but today, his prediction that I would complete the marathon was more than enough for me. Today, I was satisfied to come in second to a Kenyan.