On Running and Chronic Illness–An Update

There are many reasons I decided to start trying to run. Notice how I phrased that—I am still such a novice that I can’t really say “I run” and am not even close to saying “I’m a runner” but I am almost 7 weeks into the C25K program and I’ll be the first to admit I am shocked at how much I love it.

Or to be more specific, I am pretty miserable during it, but I absolutely love how I feel when I am finished, physically and mentally. Each time, I feel stronger, I feel more confident, and I also cough up more junk than I ever have with any other aerobic activity, so I know it’s doing great things for my lungs.

Ostensibly, I first started training for a 5K because I signed up to do the MS Muckfest, a 5K obstacle course in the mud. I knew the actual running would be in fits and spurts as we moved through the obstacles, but I figured if I could run that amount, I’d be in good physical shape for the event. (I’m also combining it with strength training at the gym and Jillian Michaels’ Shred workout, to build up my core and arm strength.) The event is this Saturday, and while I have a couple weeks left in the C25K program, I definitely think it’s made a huge difference.

It’s hard, of course. The first week I almost laughed at the notion I could run more than a couple minutes without getting winded. Even though I’ve exercised regularly for years, my lungs burned the first few days. A couple more weeks in, I was logging longer running spurts but wondered when I could do a whole workout without getting a cramp from improper/poor oxygenation. I played around with when I took my inhalers and used my sinus spray, and looked for flatter routes so I could just focus on breathing—hills and speed can come in time.

Seven weeks in, I look forward to it. I still have such a long way to go but my goals are changing, too—I want to do a straight 5K event, but next summer, there is a 7-mile road race I’ve always thought looked fun. I am not fast and I am not graceful, but I now know if I keep plugging away, I will keep seeing improvement in my stamina and endurance. I cheered on runners at the Boston Marathon the other day, and was so inspired by their dedication and grace. I still can’t imagine actually running 26.2 miles (huge shout-out to my friend and inspiration, Audrey, who rocked Boston the other day and looked totally amazing when I saw her at the halfway point), but I can more easily understand why people do it.

The Muckfest was a good catalyst for running, part of it is also that running has always been something I just couldn’t do, and I hate that feeling. But it’s more than simply wanting to conquer something that has always challenged me. I explained it once to my husband as we finished a run together—that second wind they tell you about? It’s totally real. That feeling of just tying up my sneakers and taking off down the road? I have never felt more free.

A lifetime of illness, of surgeries, setbacks, crises, broken bones, etc., will shake your faith in your body. The disappointments tally up, and the sense of feeling hemmed in is profound. I am very confident in other aspects of my life, but my confidence in my body to do what I want and need it to, to depend on it, has always lagged behind. (With the major caveat of carrying a baby and keeping her safe—however rocky, my body did its job then).

So those are the reasons I started trying to run. The biggest reason I am planning on sticking with it? My three-year-old daughter. She watches us run and she puts on a headband and starts running around, too. She knows we signed up for an event and she asked to run a race of her own, and is now registered. (I am not sure which she’s more excited about—the actual running part, or the official race t-shirt she will get).

I don’t care if she ever runs a 5K, I don’t care what sport she ends up playing or if she’s ever the fastest or the first—I just want her to be confident, and to feel strong.

Politics, Sports…and Chronic Illness?

I try to stay on point in my writing on this blog, exploring universal issues of living with chronic illness and discussing new research, policy, or insights from other writers and bloggers. But sometimes, personal interests and public issues intersect, and there’s been a lot of that happening lately.

I don’t usually stray into political leanings, but when it’s an election year and presidential health care policies have the potential to impact so many lives, how can I not write about the importance of the female vote when it comes to health care?

Similarly, I don’t usually write about sports. Now, I’m by no means an athlete—remember, I’ve broken fingers typing before, so you can imagine what an awesome combination me and a basketball court made—but I grew up with two older brothers so sports have been part of my life for as long as I can remember. I mean, I went to hockey, baseball, and football games before I was old enough for nursery school.

Plus, when you live in Boston, you can’t escape fan fever. Clearly Sunday’s game was a tough one for Red Sox nation, (though the Monday night football with the Patriots cheered us up somewhat) and the series with the Tampa Bay Rays was an emotional rollercoaster.

Why bring up a painful loss? Because while rooting for my team, I had the chance to watch Rocco Baldelli hit for the Rays. This spring, after a lot of tests and some tough symptoms to piece together, Baldelli was diagnosed with mitochondrial disease, which makes it harder for his cells to recover from even minimal exertion and can cause excessive fatigue.

Since Life Disrupted published this summer, I’ve heard from many patients and learned about many conditions I didn’t know much about, including mitochondrial disease. Despite our vast differences in symptoms and body systems affected, I could relate to a lot of what I learned, especially regarding the difficulty in diagnosing it and the fact that since it often manifests in children, it’s even harder to identify in adults.

(I had immediate flashbacks to doing homework for grad school while waiting in my pediatric specialist’s office, flanked by toddlers with croupy coughs and stacks of Highlights magazine.)

So at first, I was interested to see Baldelli because anytime a rare disease can get national exposure and awareness like that, it’s wonderful—good for general knowledge and education and hopefully, it’s also good for fundraising and research goals too.

But on a deeper level, watching Rocco’s at-bats reminded me of so many things I normally talk about on this blog: adjusting to new symptoms, negotiating setbacks, and balancing professional ambition with personal health needs. So many of us have had to be creative about our employment situation, from finding ways to work from home to switching jobs so we’re in a more flexible corporate culture. We seek ways to be successful and to contribute even when our bodies don’t work the way we want or need them to work.

Now think about Rocco’s situation, and just how much success and positive contribution depends on athleticism and peak physical condition. And think about trying to compete at his level when his body can’t do the things it used to do, the things he needs it to do. Talk about an adjustment.

In what I am sure will be an ongoing process with many revisions, Baldelli and the Rays are figuring out how to keep him in the game without exacerbating his condition. He doesn’t play in every game, and the time to rest and recover appears to be working since he had no problem knocking out some hits in a clutch position.

I’m glad to see that his diagnosis didn’t automatically mean retirement for Baldelli, and glad to see the Rays are working with him. After all, if there’s room for chronic illness in professional baseball, there’s some hope for everyone else trying to balance work and illness too.

In other news, a new edition of Grand Rounds is up at Pallimed—check it out!