As I wrote about my disappointing Mt Evans Ascent the other day, I grappled with the grief I still sometimes feel surrounding my chronic pain. I realized that one of the most difficult aspects of a chronic medical condition is its on-going nature. Duh, right?
The problem is that the losses accumulate. When I was 21, my chronic pain meant that I was discharged from the military and could no longer be a pilot. Then it took me five extra years to finish my undergrad. The pain has affected my relationships, too, including my 8-year marriage. I ended my last full-time job in part because I could no longer cope with both its demands and my pain.
Etc. Etc. Etc.
So when I experience another loss, albeit trivial – this time the disappointing finish of a race up Mt. Evans – it can re-ignite that heap of accumulating grief.
I project the loss forward too. I worry about my August race up Pikes Peak. And then my September ultra in Montana. I worry about my professional goals and whether I will be able to meet them. I worry that the next time I have a brunch date with a friend my pain will keep me from connecting with her. I worry, and I worry, and I worry.
All that anxiety can’t be good for my headache, can it?
I suppose the only thing I can do – the only thing that any of us with a chronic medical condition can do – is, as they say, focus on the moment. Right now, I’m disappointed I couldn’t run up Mt. Evans in my goal time, in the time I know I’m capable. The trick is allowing myself to feel that loss without inviting the past, more-consequential grief to once again overtake me, and without catastrophizing my future goals either.
I’ll let you know when I master this type of mindfulness.
Stats:
Distance: 14.5 miles
Vertical Gain: 3,900 feet to the summit of Mt Evans
Goal: sub 3:00! Last year I finished in 3:03, 3 minutes short of earning an engraved rock. Coming so close to the coveted rock only drove me to want it more…so this past year earning it has been one of my most significant goals.
Things done poorly:
My headache: Okay, it isn’t as much a “thing done poorly” as it is “shitty thing that happened.” Around mile one, I suddenly developed the type of headache usually caused by drinking something cold too fast. I don’t often experience that type of pain, and I haven’t been able to figure out why it comes when I do feel it. I had to start walking as soon as it started, and every time I tried running again, I felt dizzy. Even just power walking, every step was a struggle.
By mile 4, I was truly thinking of throwing out a thumb and sacking the whole race.
I was thankful for the generous road-side cheer squads.
Things done correctly:
My headache: Okay, it isn’t as much a “thing done right” as it is “inexplicable reprieve.” Just past mile 9 and after stopping on the side of the road to puke because of the pain, the freeze-type headache disappeared. The relief was so sudden, there may as well have been a “poof” sound effect. Unfortunately by that point, I had blown my pace goals so badly, I was lucky that I was in under the cut-off, and the only thing for which I could hope was just to finish.
That’s the summit, still a little more than five miles away.
Salt Tabs and acclimatization: I took three salt tabs between miles 6 and 9, so perhaps that cured the headache? Who knows! All I know for sure is that the headache couldn’t have been due to altitude, otherwise it would have grown worse, not better, above 13,000 feet. Evidentially my three trips to Mt Evans in the two weeks before the race helped in that respect.
Drafting: The winds were particularly treacherous in the top miles, gusting to over 40 mph. A few of us stuck together to help take turns leading on the switchbacks that directly faced it, but it still cost even more time.
Results:
I finished in 3:54. Hey that’s only 55 minutes over my goal, right?
Other stuff:
Entering the 2014 mountain running season, I had hoped that this would be the year I would break out of the middle of the pack. Instead, I find myself dealing with levels of pain that I haven’t felt since before I became a runner. At one point during the later miles of the race, I said to someone walking next to me that my time goal “wasn’t in the cards” this year. I started thinking about that idiom and those metaphorical cards, realizing that there might be a lesson in it: what I’m struggling to accept is that I am playing with a different deck of cards than someone who doesn’t have a chronic daily headache. (And in fact, we all have a unique set of playing cards.) It’s heartbreaking to work so hard for this race only to have my chances crushed by my out-of-control pain. But as a chronic headache sufferer, that is my reality whether I acknowledge it or not.
At the end of 14.5 miles, this happened:
I would rather fight my headache every step than not embark on these journeys at all.
Stats:
Distance: The race was supposed to be 50K (31 miles) but due to flood damage and a re-route, ended up somewhere approaching 34 miles.
Vertical gain: 8,000K, felt like 10K!
Was there really that much descent?
I had no idea which way I was headed for most of the race!
Goal: To better my time from last year. In 2013, I was worn down from my first 50 mile race immediately followed by a road marathon. I started the Dirty 30 feeling strong, but somewhere near mile 21 things quickly turned disastrous. At one point I even sat down on a large rock on the side of the trail, tucking my head into my lap and wishing I could quit then and there (I was miles from a road or aid station). Two guys, who were also struggling, coaxed me into standing up and turning their duo into a trio. We walked it into the finish line in 9:28. Since then I’ve felt a bit shitty about the time and this year wanted to earn some redemption.
Off we go…
Things done incorrectly:
Too fast at the start! Even though I told myself repeatedly before the race that my ideal position would be in the very back of the pack, somehow I still found myself among a group of runners who wanted to go faster than I did. Because we were on single track for a solid four miles, I pushed myself to stay with them so that I wouldn’t clog up the line, and ended up putting in a half-marathon effort when I should have been conserving.
Nutrition. I didn’t eat nearly enough. I tried a variety of foods but had to force it all down. I struggled with heavy fatigue in my muscles and then I began to get a migraine probably from low blood sugar. (It was one of the few races/days in the mountains that my headache got worse, not better, over the course of the day). I kept the migraine from getting too bad with caffeinated GU, but many of the down sections were particularly painful when my feet slammed against the ground.
Gummies in a side pocket. Before the race, I moved my gummy bear stash from their usual ziplock bag in a back pocket of my Salomon pack to a pocket next to my ribs. They ended up melting and goo-ing up my pack, shirt, and left hand (from holding my sides during the steeper climbs) for the entirety of the second half of the race. Ew!
Stuck in my head. Have you ever begged yourself to shut the frak up? I couldn’t stop crunching splits and miles remaining and vertical gain climbed. Worse, I kept comparing myself to the runners who were around me. I alternated between wondering why I couldn’t keep up with them when I was being passed, and then realizing how strong they all were and feeling intimidated. At one point I looked down at an Ironman tattoo on the calf of the guy in front of me and realized just with whom I was trying to keep up. Nothing good comes from this line of thought.
Things done well:
Tried a new mantra: “no limits.” I’ve been feeling like I’ve been boxing myself into negative thinking about what kind of runner I am (mid to back of the pack for these kinds of hard races) which leads me to a lot of “I can’t” thinking. Reciting “no limits” helped, but inevitably my mind would wonder back to crunching numbers and eyeing the runners around me.
Stopped to take this picture.
Dirty 30 is a beautiful course – one of my favorites.
Made friends. My mental game turned around about ten miles in when I heard the runner in front of me talking to another runner about a possible Nolan’s 14 attempt later this summer. (Nolan’s 14 is a unofficial, self-supported race to climb 14 Sawatch 14’ers in less than 60 hours, and it absolutely fascinates me.) As soon as I began asking him about his plans, my mind pulled away from number crunching and I was finally able to relax, let my lungs open up, and settle into a sustainable pace. We chatted for about a mile about Nolans and other races. Turns out my new friend (Bill) has done over 20 100 mile races and close to 100 ultras in total. Absolutely awe-inspiring. A few miles later I chatted with a woman named Joy, who turned out to be a neighbor, and then after that a woman named Paula, another 100-mile veteran. Paula and I kept a similar pace, so we teamed up. She pushed me on the climbs, and I think I pushed her a tad on the descents, so it was an advantageous partnership. The best part was the conversation which took my mind off of the suffering. It’s amazing how much you can bond for over 10 miles. And it was amazing how much she could keep talking when I could hardly breathe! I was sooooo thankful. (Though I’m a little disappointed not to hear her president stories!)
Turned left at mile 25. Okay, actually, I think it was mile 27 or 28. At that point, runners can either turn left for one last climb, this time up Windy Peak, in a 5.5 mile loop, OR they can choose a big DNF (Designation on the results, stands for Did Not Finish) and head straight back to the finish about a mile away. Leading up to this check point, I had it in my mind I wouldn’t continue. Paula and I had been hearing thunder for over an hour, and even worse, we were bumping up against the cut-off time. I was telling myself just to make it to that point and then we could cut out. When the volunteer at the check point told us that the storm was moving the opposite direction and that we had beaten the cut-off time, I was crushed. Crushed because I wanted the excuse to stop pushing myself. Never before had I been so sure I would DNF. But Paula made that left turn, and bonded over our mutual desire to push one another, I followed her. Hardest. Choice. Ever.
Dug deep to climb Windy Peak. Paula led and I followed after her, and despite crippling fatigue and muscle pains and my hurting head, we pounded out the 1,200 foot climb to the last summit of the day. From there we had a three mile (ish) descent to the finish line, which we crossed together.
Results:
9:32, 4 minutes slower than last year (though this year’s course was 2-3 miles longer). But the difference is that this year I am proud of myself for finishing and not at all ashamed of my time. 15% of the field DNF’ed. I can’t remember the last time I felt so satisfied to simply finish a race within the cut-off. After struggling a lot this season with self-doubt and frustration that I’m stuck in a plateau, it’s refreshing to gain so much gratification in just knowing I gave the race 100% of my capabilities.
That’s Paula on the left. I’m the one covered in sweat, mud, chalk from my Tums that got wet in my chest pocket, and gummy bear goo.
Other stuff:
Hero points to my husband, Nick, for waiting hours for me at the finish line, meeting me a ways up the trail before the finish, hauling my shiat to the shuttle and then to the car, driving home, pulling over when I needed to puke, and listening to my post-race moaning!
Thanks to Bill, Joy, and Paula, for connecting with me on the trail and making all the difference.
Lately I’ve noticed a string of articles with titles like, “What Not to Say to a Woman Who is Expecting,” or “10 Things Not to Say to Someone with Cancer.” There’s many, many more with the same idea, all published in popular online outlets in the last few months.
Here’s one for migraines and one for chronic pain.
Both articles left me considering the expectations I have for those around me when we discuss my headache (which, honestly, I don’t do a lot). What I’ve realized is that I don’t have expectations. No, that isn’t entirely true. It’s that I don’t want to hold any. I don’t want my friends to feel as though they need to study Huffington Post to learn how to appropriately have a conversation with me, lest they will offend me.
Here’s the thing: other people aren’t responsible for managing my sensitivities*.
Let’s take the Huffington Post article on migraines, for example. There’s no denying that saying to someone “Your pain is all in your head” or “You don’t look sick” are shitty statements.
But what about the first thing on the list: “I have headaches too.” People have said this to me many times, and what I assume is that they are trying to make a connection, trying to relate with my struggle. And while maybe they don’t know how painful my headache can be or how hard it is to have a headache now for 12+ years, I have to ask myself if it really matters. Is it really that important to distinguish two different levels of suffering?
If someone says something comparable to “I have headaches too,” and in interpreting that statement as minimizing my pain I feel the need to argue that the other person couldn’t possibly understand, I have to ask myself why I feel I need them to. Perhaps I need to give myself the level of compassion I am seeking from that other person. Or perhaps I need to find more people in my life who also hold that compassion for me. In the past, I’ve struggled in both areas. But over the years, I’ve found that when both are in place in my life (compassion from myself and from loved ones), it is far easier to avoid a “my-life-is-harder-than-yours” sentiment.
The “my-life-is-harder-than-yours” mindset is precisely the underlying basis of these types of articles. “My life is so challenging, I need you to read this article to be able to speak to me.” Or, “My life is so challenging, there are a whole list of things I demand you not say to me.”
There’s a debate on whether or not there is a hierarchy of suffering. In other words, if people’s pain can be ranked against each other’s in some sort of pecking order. There’s much to be said on this topic, but I argue, no, there can’t be a hierarchy because we all have certain conditions that bring us challenges. Some of us have kids. Some of us don’t. Some have medical conditions. Some have psychiatric. Some have difficult relationships…the list goes on and on. Without walking through those specific issues, it is impossible to understand the nuances and difficulties each one brings.
And even if it was at all legitimate to stack our pain against each other’s, we would have to face the reality there is always – always – someone who is facing more adversity than we are.
What I believe is that intentions can be felt. If I’m having a conversation with someone about my headaches, I believe I can tell the difference between an unhelpful comment that is made out of innocent ignorance, or one out of resentment, jealousy, or one-upmanship. Those intentions are what matters. And that’s where I hold my expectations. I seek out meaningful relationships only with people who make an attempt to connect with me on an empathetic level. When speaking to me from that heartfelt place, you don’t need a Today Show guide.
In the spirit of those caring relationships, if someone says something that touches on one of my sensitivities*, I try to tell them so. Not that I always do, or that it is easy, but I have found (the hard way) it is the best way of making my feelings known without requiring the other person to maintain constant hypervigilance for fear of offending me.
This meme, posted on a Facebook migraine group, sums it up:
*Postscript: I realize the word “sensitive” as used twice above may not be the best here. Because it is so commonly paired with “overly,” there is a connotation that it is unjust or unfounded sensitivity. That isn’t what I mean to say here at all. What I do mean to say is that I (like everyone else) have a particular, nuanced way of interpreting the world based on my life experiences.
I have a confession: I’m harboring a particularly insidious habit. When speaking about my headache, I tend to abbreviate the term and refer to my body part most affected, my head.
“My head’s bad today,” I’ll tell my partner, as if my head were a teenager in need of a drastic parental intervention, like a year grounded in its room or electronic privileges forever revoked.
Ummm…no. My head isn’t the offender; it is the entity being violated.
Let’s back up.
When I lost my career in the Air Force – as well as my dream of flying, the ability to manipulate numbers in my mind with ease, and any hope of enjoying a quiet moment without this pulsing in my temples – I hated my body for breaking. Breaking. That’s what I called it. In fact, that’s how the cadets at the Air Force Academy trained me to think of it. If a malady prevented a cadet from performing, it was clearly a reflection of a personal weakness.
I didn’t want to consider myself weak, so it was my body. Not me. My body was the one who yielded to the infection in my nervous system. That mindset initiated a multi-year war between me and it, my own tissue and nerves and blood.
Many people with chronic pain and illness have the same experience: they split their minds away from their physical presence and begin to think of it as a separate entity. With the disassociation comes anger at their bodies – rather than empathy – and hostile resentment.
That severance and bitterness is precisely what I express when I tattle on my head for “being bad.” Wouldn’t it be more kind if I said, “My head is struggling today.” Or, an even more embodied, “I’m struggling today.”
It’s a subtle but meaningful difference. I can’t help but think that the way I use language, particularly over the course of a decade plus of chronic pain, impacts how I think of my condition.
So this week, I’m challenging myself to be mindful of the ways I communicate about my headache.
Recently someone asked me what advice I would give to another person with chronic pain who hoped to become physically active. After reflecting on the question a bit, I’ve come up with a few suggestions that might be helpful. (With the disclaimer that I’m not a physician or a physical trainer, just a fellow chronic pain sufferer.)
Challenge your belief system.
I remember when I was twenty-one telling a friend that I would never be able to stop taking narcotics as long as I had a headache. How wrong I was. In fact, I threw out my shoebox full of prescriptions by the end of that month. Then I believed I would never be able to go for a run again. Wrong again. I believed I would never work full-time. And again I proved that false.
The truth is that of course we have limits. Every human does. I’m not denying that those of us with chronic conditions often have more restrictions than those who don’t, but the trick is to uncover which of our limits are concrete versus those that can ultimately be overcome.
Try this: every time you notice yourself saying or thinking, “I can’t _____,” challenge the assumption that you just made, with the assumption that gains towards that goal might be slow. If your “I can’t” is running a marathon, start by daring yourself to run a mile. You might be surprised.
Discover what you love.
If you’ve ever met me, you know I love mountains. For me, the motivation to climb and adventure in them is the greatest intrinsic pleasure possible. I also can’t say no to the prospect of a long run. But like many of my friends you might think I’m crazy. If that’s you, perhaps try one of the other countless ways of getting up off the couch: yoga, Zumba, weight lifting, cardio machines, swimming, team sports, rock climbing, adventure runs, even something as simple as walking around a nearby park, perhaps even with a latte in hand.
Find what works for you and do it.
Try this: If you don’t have friends who can invite you along to their activities, Meetup.com is a fantastic way of connecting with groups of people who can initiate you into their hobbies. You might also discover great sites depending on the particular activity in which you are interested.
Find balance.
If you have chronic pain, there are going to be days that you don’t feel like moving. Especially at the end of a full day of putting up with my headache, what I really want to do most is curl on my couch with a blanket and mind-numbing TV (and I’ll admit it, all too often I do). Here’s where things get tricky. Some days, you need to make yourself get up anyway. It’s all too easy for one day off from running (or other activity) to turn into two or five days and then two weeks. The more you are inactive, the harder on your body both physically and mentally. I’ve found it is far easier to maintain momentum of training than overcome the lethargy I feel after resting too long. After all, if your condition is chronic like mine, you can’t wait until you are 100% better because you never will be.
Conversely, some days, you need to give yourself a break. Only you can decide where that line is.
Try this: If you have a work-out planned but are having a particularly rough day, make a bargain with yourself. Put on your work-out clothes, go the gym/trail/pool/park, and exercise for at least ten minutes. Start slowly and ease into it. If after those ten minutes the pain is still too much, stop.
Forgive yourself.
Miss a week of work outs? A month? A year? Remind yourself that staying active while dealing with pain is no easy feat. Forgive yourself and begin again.
My partner and I have had a long-standing joke that whenever I dissolve into a fit of pouting silence (I won’t comment on how often this happens), that he tells me to “use my words” as if I was a three-year-old.
Often, I feel like telling my headache the same thing. When it gets grouchy and retaliates with increased pain, I wish it could tell me what it needs.
This year has found me in more pain than I’ve had in the last six. I’ve had far, far more “bad” days and the level of pain I consider a “good” day has dramatically increased. A squeezing throbbing wakes me up in the middle of the night, pounding in my temples makes work difficult, and sometimes the slightest noises or bright lights make me cranky. As much as I don’t want to admit it, my headache has limited my activities – work schedule, time with friends, even my runs – more than it has in a very long time.
I keep searching for a reason for the increased pain. Changes in my diet? My work-out schedule? Something to which I’m allergic? My peripheral nerve stimulator not functioning as it should? Is it the weather patterns? Stress? I wish I could scream at it, “Use your words!”
I’m doing my best to strike a balance between settling into this new pattern and accepting it as a new normal, while still search for a clue that might lead me in the direction of relief.
A few years ago an acquaintance remarked on my overly-active lifestyle that I must be running from something.
I am. My pain.
Since developing meningitis in 2001 at the age of 18, I’ve had a chronic, incurable daily headache that hasn’t left me even for a moment. In the first three years after becoming ill, I spent more than 150 days in the hospital. I lost my ability to complete my math major, my status as a cadet at the Air Force Academy, and my dream of becoming a pilot.
Beginning flying lessons at age 17, July 2000.
I had no idea I would lose my medical clearance to fly within a year and a half.
I tried just about every drug imaginable to manage the headache: anti-inflammatories, anti-depressants, seizure medications, and blood pressure medications, just to name a few. Neurologists ran out of ideas, acupuncturists couldn’t break through, pain doctors injected my scalp with Botox, and a few times a chiropractor even attempted to “manipulate my skull” by inflating balloons in my sinuses. For three years, I lived half comatose on a cocktail of narcotics. I realized the side-effects of so many medications and treatments kept me even more incapacitated than the pain on its own.
It wasn’t until 2007, six years after I developed the headache from hell, that I had a series of surgeries to implant a peripheral nerve stimulator, a subcutaneous device that sent low levels of electrical current to the nerves in the pack of my neck. By that point I was bald from the surgeries, fat, depressed, and unemployed.
But once recovered from the surgeries, I started having significantly fewer bad headaches. While I still had constant, low level pain, I could do more, sleep less excessively, and occasionally exercise without paying the high price of days of increased pain. I went for short walks, then longer ones. I began to jog. I climbed the foothills near my home in Boulder and then one of Colorado’s 14,000-foot peaks. I lost 30 pounds. I went back to school, graduated college, and got a job. For the first time since 2001, the pain didn’t control me.
I began to wonder how far I could push my body before my headache punished me. Could I run a half marathon? A full marathon? Could I climb all of Colorado’s 14,000 foot peaks?
In 2010, I ran over Rome’s cobblestone streets to finish my first marathon. I was elated. If I survived 26.2 miles, or 42.195 kilometers as the Italians referred to it, plus the hundreds of miles it took to train, all with an everlasting headache, what else could I accomplish?
Celebrating the completion of the Rome Marathon with one of my sisters, March 2011.
I returned to the States and my job feeling indestructible. I felt as close to conquering my pain as possible without actually being out of pain. I rewarded my legs with a two-week running and hiking hiatus.
After the first week of my break, I had my first day of bad day of pain in weeks. My skull felt crushing. I could feel my heartbeat in my temples. It hurt to open my eyes. I felt dizzy, and I vomited when I tried to get up from the couch. How could I survive the day at work? What was causing the increased pain? By the second day of my worsened headache, I was panicked. The headache became so intense I forgot about my success in running and I could only remember the years I spent being held hostage to the pain. A full week passed. I couldn’t sleep, I made mistakes at work, and I was on the verge of quitting. I felt helpless and hopeless.
Finally, I made a choice. Running was the one thing I could count on to lift my mood and help build my confidence that I could live a normal life despite the headache. I risked making the pain worse, and I went for a run. The next day, I went out again. Three days later, I was back to a headache that rarely worsened beyond a low, baseline pain.
Mentally, I felt in control again, and better, physically the endorphins and increased blood flow actually lessened the headache.
That’s when I became completely sure that running wasn’t something I did despite my chronic pain, it was something I didbecause of my pain. And there wasn’t anything wrong with that.
Since 2010 and my first road marathon, I’ve competed in a number of other races as a proud, middle-of-the-pack runner. I’ve also transitioned to mountain races and ultras, distances further than 26.2.
I think of ultra-running as “ultra-journeying,” as I walk, run, or meander in the mountains, testing my own limits more than testing myself against others.
Lynn K Hall 