First, you probably aren't paying attention to the time on the clock in the picture. Or maybe you are. I am, and it's not correct (due to multiple races being run that day, so no hard feelings), but if you are a runner, I think you understand my *slight* fixation with accurate timing. Real time is as follows:
Place Recommended for you  | Name | Bib No | Age | Age Group | Total Time |
79 | Elizabeth Terry | 3229 | 21 | 9 (18-24) | 2:26:40.5 |
That being taken care of... Running gives me an objective measure of how I’m really doing (this includes time). There have been countless days where I don’t need a measure to tell me how I’m doing; with narcolepsy, if I’m having multiple cataplexy attacks, I know it’s a pretty shitty day. Likewise, if I haven’t been able to concentrate on any activity for more than 5 minutes before breakfast because of some brain fog, I know it’s not going to be a good day. However, if I’m feeling like I’ve got life a little more under control, or that I’m having a REALLY good day, then one sure-fire way to confirm or disprove this is by going on a run.
Because there are so many incomplete definitions and interpretations for narcolepsy, I’m not going to give one of the ignorant websites the traffic of linking them. Instead, if you want to know what the hell cataplexy is (and more), I’ll point you to this website for some context on my particular flavor of chronic illness. Why? That site, the NICER Foundation, while humble in its site layout and fanciness, is a recently approved nonprofit agency and member of the National Organization for Rare Diseases (NORD), and it currently has (in my opinion) the most comprehensive and easy to understand definition of narcolepsy. Oh, and it was founded by someone with narcolepsy.
Back to running.
How often when you’re exercising or working out, does the little voice in your head say something to convince you to quit? Something along the lines of
“This is hard. This is too much work. Slow Down. Just for a little bit. Do I have to do this? You can always do more tomorrow.”
Have you ever had that little voice suddenly become your biggest cheerleader? Cheerleader might be misleading… more like the relentless coach. It’s kind of a surprising feeling. Normally you’re trying to convince yourself to keep going, but when the narrative turns into
“This is easy. You’ve got to do more. As far as you can. As fast as you can. You’re fine. You need to move. You’re not doing enough. Don’t think, just run. Worry later”
you might assume it’s a good thing. It’s not. At least for me.
The relationship (and separation) between mind/thoughts and body/feeling is endlessly interesting to me. Since I started running as a (very) awkward 14-year-old (see below, just for funsies)
and actually since beginning horseback-riding at age 9, I figured out that if my brain was telling me to stop, then I could check in with my body and determine if I really needed to or not. I discovered that almost always, if it was my mind complaining/bargaining, I was usually safe and could keep going. The problems arise when your head tells you to keep going and you ignore whatever your body has to say otherwise.
And I would. Running, something that for so long I did purely because I enjoyed it and to challenge myself, became a desperate need in the time leading up to getting a diagnosis. An escape. During the almost year it took to finally figure out what was wrong with me, I would walk back from class in a foggy haze, counting my steps or repeating to myself to "just make it back to my room," and then I could run and wake up. If I could run, I was OK – that was my rationale.
Except sometimes the next thing I knew, I was three or four miles off campus. It was completely unnerving to find myself on a trail or road thirty minutes away from where I last remembered; looking down at my running shorts and shoes, gasping for breath and legs wobbly, but not remembering how I got there. I know how I got there, but I didn't remember doing it. Other times I’d “wake up” with it pouring, snowing, or the sun setting, and realize I still had to get back. So I’d suck it up, turn on the “cheerleader,” and get myself home (and usually regret it the next day). Even if I regretted it, I reminded myself that as long as I could run, I was OK "enough."
I didn’t know how to help my body; I heard it, but not knowing led me to ignore it. I blamed myself: I was lazy, I wasn’t exercising enough, I wasn’t sleeping enough. All ‘me’ problems. So I compensated and just pretended it wasn’t there.My body had other ideas (as it usually does, and which everyone so often ignores) and to get my attention, it’d be falling asleep without any permission from me, or it’d stare at a homework assignment for literally hours and get nothing done. My physical self would completely reject movement for hours at a time, though I might still be awake the entire time. In class after class my head would bob and my vision would blur, my hand kept writing, but nothing intelligible was on the paper when I finally woke up. Which meant I’d have to listen to the entire recording of the class again (if I was lucky enough to have it) and decipher what I'd missed.
I started “treatment” in March 2015 to try and undo the damage of almost 7 years of chronic sleep deprivation and have continued to use running as a metric for progress when I think I’m getting somewhere. If you didn’t click the link above and the idea of sleep deprivation is understandably confusing, narcolepsy is actually the result of not getting the “right” sleep – so we’ll always be sleep-deprived even if we nap, even if we sleep for 10+ hours.
I've been running without any particular consistency since March 2015, just when I think I'm able. Typically I can tell within five minutes if I'm really able, or if I'm just mentally dragging my body out to accomplish something.
Here's a little secret: Pretty much anyone with an invisible illness can "get it done."
It's the same as pushing through a day when you're sick, or showing up for an event when you're emotionally drained. You can do it for a short period every once in a while, but if life was like that day in and day out (and sometimes it does seem like it is), that'd be a lot harder. You need something to give, because you're just surviving. For someone with a chronic/invisible illness, it never gives. So we can, and we often will, get through it, but we'll just keep surviving until there's a drastic change or we slowly (or quickly) self-destruct.
Not entirely encouraging, but I've been lucky enough to get the drastic change. Drastic does not always equate to fast ... mine happens to be going on a tedious six month trajectory. After becoming a regular with multiple pharmacies, doctors, accommodations/HR offices; and playing phone/email-tag with more people than I can count, I think I'm finally getting somewhere.
Because two weeks ago, I ran three times. I haven't done that since June. Last week, I ran twice before going down to IU to celebrate homecoming for four days, which I definitely could not have done three months ago.
When I've ran the past couple weeks though, it's felt different. I'm not going very far, or very fast, but my head hasn't been trying to block out my body with "I'm fines" or "keep goings." Instead, I'm aware; aware of my steps, my stride, my breathing, my posture, my pace, the weather... which sounds like a lot, but I'm not actually thinking about any of it. I'm healthy enough to just listen and adjust as needed. So when thoughts of "hey, why don't we slow down?" pop into my head, I already know if I actually need to or not.
Lately, I haven't. And instead of regretting my runs or rationalizing them, I'm finally enjoying whatever I'm able to do that day - even if that means taking a break.
I think my stunningly-attractive 14-year-old self would approve.
