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Pain with a Purpose

Pain with a Purpose

It’s probably no surprise that running is not usually a recommended activity for someone with the frequent injuries and joint issues associated with Ehlers-Danlos Syndrome.  It seems to confuse a lot of people that I can have chronic pain and other EDS symptoms, yet still be able to run.  Since I recently started training for my third half-marathon, I thought this would be a good time to explain why I choose to run despite any extra pain it may bring me.  Managing EDS is all about balancing my energy and pain levels with my daily activities.  Some days running is possible, while other days I have to modify or sit out to recover.

When I run I am the same as every one else.  If we cross paths on the trail, you won’t see my scars, the medications I take, the weakened bones or the frequent dislocations.  All you’ll see is a fellow runner working to improve their endurance, strength and speed. I love that about running.  I can leave the troubles of managing a chronic illness at the door and feel like any other runner.

Although I can leave these troubles, that doesn’t mean I train the same way as a “normal” runner, or that I can ignore symptoms.  Due to frequent injury, I often have to start running again from ground zero.  I’m in a constant cycle of being “uncleared” and “cleared” to run from my medical team.  I have to respect these guidelines (for the most part…but that’s another story) and try my best to avoid running while injured.  I also spend more time on post-run recovery than a typical runner in order to protect my joints, my easily knotted muscles and to reduce pain.  This recovery process involves lots of icing, TENS unit sessions, heat, elevation, anti-inflammatory medication, compression, icy hot (or similar brand) patches and foam rolling, depending on the site of pain or soreness.  It also means I can’t run every day. I can usually manage 2-3 runs per week, but I’ve learned to work around this limitation and fit my race training into my abilities.

Running also gives a purpose to my pain. Soreness after a run is comforting to me because I know exactly what caused it. This might seem like a weird statement, but Ehlers-Danlos Syndrome rarely gives you pain that makes sense. I often don’t know why I hurt. I’ve dislocated joints while sitting on a couch or coloring on the floor, activities that are not supposed to hurt. However, running gives this pain a purpose, which is something other parts of my life cannot do.  EDS rarely makes sense, but running always does. Running might cause me more pain than the average runner, but I know my body and understand which pains are dangerous or signal oncoming injury.  Running has taught me that I am in control of my body, even on days when it feels like my body controls me.

I firmly believe running has helped me manage my EDS symptoms. It’s helped me strengthen my muscles to support unstable joints.  It’s given me the confidence to realize I can do anything I want in this world, no matter the limitations that have been placed on me.  It’s also been an incredible outlet for managing stress.  There is just something about my legs pounding the pavement that allows me to forget about my life and just run.

I have incredible friends who support me every mile, whether by joining me on long training runs or by helping me during the post-run recovery phase. I’ve also met incredible teammates through MDA Team Momentum, who join me in using our training miles and races to raise money for the Muscular Dystrophy Association and run for those who can’t. Running might be hard for me, but I certainly don’t take any step for granted. I know this ability can be taken from me at any moment, so for now I’ll keep running and using my miles to help this world for as long as I can.

Fighting Through the Flares

Fighting Through the Flares

“Fans, for the past two weeks you have been reading about the bad break I got. Yet today I consider myself the luckiest man on the face of this earth.”  – Lou Gehrig in his “Farewell to Baseball Address”

I have been struggling health-wise with the transition back to college from winter break, but for some reason Lou Gehrig’s speech keeps coming to mind in the midst of these struggles. It’s easy to get stuck in a rut of negative thoughts when I’m not feeling well, but Gehrig’s speech reminds me that despite EDS, I have been living quite a lucky life. On hard days I strive to channel the strength and confidence Gehrig had when giving his powerful speech. Because if you look around, we are all pretty lucky to be here.

Lou Gehrig’s “Farewell to Baseball Address” is one of my favorite speeches in history.  Gehrig gave this speech as a way to announce his retirement from baseball after being diagnosed with ALS, a progressive, terminal disease that would ultimately take his life less than two years after this speech.  This speech captures the essence of getting a bad break and not letting it define you. Every single time I read the speech, I am left in awe of the strength and courage it took for Gehrig to get up and speak about being forced to leave the sport he loved with such poise and confidence.  He could have easily spoken about how terrible his life was, but he chose to make it about happiness.

Being diagnosed with a disease or illness doesn’t alter your ability to love your life. There is no need to feel immensely sorry for people with a disease or illness, as our lives have the same capacity for happiness as anyone else’s. It might look different from yours, but it’s still there. If you are newly diagnosed it might not feel this way, but if you look close enough at your life you might be surprised at what you find. Gehrig talks about the things he finds “lucky” in his life and they range from playing alongside the greatest ballplayers to simply having a mother-in-law who takes his side (against her own daughter) in friendly squabbles. He shows us that you don’t have to have it all to have it good.

I’m sure Gehrig wasn’t just blindly optimistic after receiving his diagnosis, he probably had his dark days and times when he struggled to cope with the reality of a terminal disease.  However, he decided his legacy would be of courage and optimism.  He decided to view life on his terms, not ones set for him by ALS.

It’s stories from other chronic illness warriors, such as Lou Gehrig, that keep me motivated to fight through the flares. As Gehrig said “I might have been given a bad break, but I’ve got an awful lot to live for.”