Why Not Today.

by julie on February 11, 2010

I was looking forward to my 3 mile run today, as these shorter runs have become a comforting and stress-relieving part of my winter routine. However, I’ve decided that it’s best that I don’t run today. Hopefully I’ll be able to get this run in tomorrow, so it’s really not the end of the world. None-the-less, I think it’s worth explaining why not today.

In an earlier post, I promised that I would be more honest about how narcolepsy affects my training.  I wrote, “I realize that I haven’t blogged much about these complications, subconsciously glossing over the difficulties to focus more on the fun and positive parts of this journey. I hope to open up a bit more in the months ahead to give a more honest portrayal of this experience.” So here’s my first attempt to shed some light on my own darkness:

Lately, I’ve been on top of the world. Much to my own surprise, my running is going incredibly well (knock on wood). The tendonitis in my knees is well under manageable control. I’ve even grown to almost enjoy stretching! Coordinating my running, stretching, icing, hydrating and balanced eating schedules has been a big challenge, but something I’ve been more than happy to take on.

However, on top of all that, I’m simultaneously coordinating an equally complicated schedule of narcolepsy medications and symptoms. I rarely talk about this with anyone – as I feel that it would take hours to explain. Why so complicated? Well, a few reasons. First of all, each drug affects the multiple symptoms of narcolepsy differently. Second, the drugs interact and may change the effectiveness of each other. Third, the timing of when I take these drugs determines when I can sleep, eat, drink alcohol, and drive. Fourth, there are tolerance issues to consider, as some of these drugs will stop working if I use them on a constant basis. Lastly, I experience side effects from these drugs – some more tolerable than others.

It may be important to note that these drugs are not a cure for my narcolepsy, nor do they “normalize” me by any means, however they do help me to achieve a much higher quality of life. Without these treatment options, my life would be entirely under the control of cataplexy (collapsing to the ground) and pervasive sleepiness. This is the reality of my condition that I’ve never fully lived, since I was lucky enough to start treatment just as my symptoms were becoming truly disabling. Thus, I must balance my frustrations with the limitations and drawbacks of these drugs with my appreciation for their existence. These drugs are a big pain, but when it comes down to it — there would be no “REM Runner” without them.

Still with me? So, anyway, it’s a lot to coordinate, but I’ve gotten much better at it over the past couple years. I know now that I must prioritize my treatment to get the most out of the rest of my life. As I like to joke, my narcolepsy is “my baby.” However, today is just one of those days when something slightly out of my control put my baby in the corner.

My nighttime medication, taken twice every night, is vital to stabilizing my cataplexy. If I do not get both doses, my cataplexy will become a looming factor the next day. This may only mean a few knee-dips or an increased chance of dropping something I’m holding in my hands. Or this may mean that I have a bigger cataplexy attack later in the evening. Regardless, I try to avoid all of this as much as possible.

Last night, I took no nighttime medication, as I had none to take. My next shipment is in the mail, however, due to the blizzards here in DC, we haven’t received mail in my building for literally a week. Obviously, I never thought that one blizzard would turn into two blizzards and effectively bring civilization in DC to a halt.

So, without any nighttime medication, my sleep was fragmented but bearable. However, upon walking out into my living room this morning, I felt a tinge of cataplexy. For some reason, I wasn’t expecting to see my darling roommate at the kitchen table. It was just a subtle surprise, nothing drastic, but enough to turn my legs to jello for a second, I guess. (What can I say, Steve, you make me “emotional!”) Signs of cataplexy in the morning scare me, as it usually only gets worse as the day goes on. Luckily, there’s good news, bad news, and more bad news.

The good news is – there’s another drug I can take that will immediately wipe out my cataplexy for that day. The bad news is that I can’t take this drug everyday because of tolerance issues. And the other bad news is, even when I take a very small dosage of this drug, it makes me feel nauseated and shaky. I must admit, this drug produces waves of discomfort that can steal my patience and concentration for hours. Thus, taking this drug isn’t always worth it, given the side effects. I must look at what I’m supposed to do that day (social interactions and public places) and decide if I prefer nausea and jitters or cataplexy.

Today, I’m looking forward to celebrating a friend’s birthday this evening (happy birthday, Em!) so I’ve chosen this drug (with its side-effects) over cataplexy. Given my current level of discomfort, I don’t feel well enough to run today. Of course, even if I hadn’t taken this drug, I wouldn’t have felt safe running with my level of cataplexy. So it was really a lose-lose scenario for running today. Oh well – I’m hoping my medication comes in the mail (as the second blizzard has finally passed) and I’ll be back running tomorrow, with even more vigor.

For now, I’m going to go take a walk with my camera and look into buying some ginger tea (as I hear it works wonders for nausea). I hope I don’t sound like a martyr. As I said, I usually leave the running tally of drugs v. symptoms out of the conversation. However, I’ve decided to be a little more honest for communication purposes only. I do not think I’m the only one who deals with challenges of this nature; I only hope to reveal some of the more subtle nuanced ways that narcolepsy affects my life and my marathon training. Thank you.

{ 6 comments… read them below or add one }

Meatloaf February 11, 2010 at 2:59 pm

I was "with you" throughout the entire post! Thanks for being so candid and sharing this post. So proud of you for tackling all of this. xoxo

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Patricia February 11, 2010 at 3:02 pm

The snowfall in the Philadelphia area has just exceeded the most in a single year since the history of record keeping. My muscles can attest to that statement as well, after several workouts of shoveling inches of pristine white snow. I do love a good snow storm. As for defined muscles, oh the possibility… one can dream

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Phoebe February 12, 2010 at 9:17 am

Very honest Jules. Your self awareness is inspiring. Hope the day went well.

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Nick February 12, 2010 at 10:20 am

There's no martyrdom here, just a simple (and eloquent) explanation as to why this project is so impressive. Running a marathon is a feat in itself, and to do it while balancing a serious disorder and extreme medications a is testament to your fortitude. This project – this marathon – is victory through defiance. The narcolepsy and associated medications affect how you do things, but you are retaining control over the things that you choose to do. Run on. Your message is worthy and strong.

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REM Runner February 12, 2010 at 7:10 pm

Thank you for all the great feedback on my post. I was hesitant to write this one, but glad I did.

Update: I received my medication in the mail yesterday, so got right back on track. I ran my 3 miles today and I'm looking forward to a 18 miler next Tuesday!

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Mel February 13, 2010 at 2:20 pm

Hi, just wanted to say that I love your blog! I work in a research group investigating chronic pain, anxiety and sleep problems so was especially interested in the context of your marathon training. Best wishes for your training, Mel.

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