Saturday, April 14, 2012

Are you a runner with chronic illness?

"Nausea" Pencil drawing by Malinda Ann Hill

I'm the "go with the flow" slow twin and I was diagnosed with Idiopathic Gastroparesis in 2000.

Gastroparesis (delayed stomach emptying) causes stomach pain, fullness, nausea and vomiting. After several hospitalizations, IV's, feeding tubes, medications and other treatments, I had a gastric neurostimulator (stomach pacemaker) implanted on March 3, 2011.

While my symptoms continue to be debilitating at times, I try my best to run whenever possible. I will write more about my experience in a future post.

Are you a runner with chronic illness? How has chronic illness affected your running? Comments appreciated!

My guest post "Running with Chronic Illness"
APRIL 24, 2012

I started running when I was 22. Over the last 18 years, I’ve run dozens of races and completed 7 marathons while living with chronic illness. I have gastroparesis (delayed stomach emptying) which causes severe stomach pain, nausea and vomiting. There is no cure for this condition and only a few treatments available which offer temporary relief. After many years of failed treatments, hospitalizations and feeding tubes, I had a gastric neurostimulator (stomach pacemaker) implanted on March 3, 2011. While the pacemaker has provided some relief, my symptoms continue to be debilitating. I continue to run whenever possible even when I’m experiencing stomach pain and nausea. However, there are many days that I cannot run because of vomiting and fatigue.

I hadn’t run for weeks when I met Joan Benoit Samuelson at the Credit Union Cherry Blossom 10 Miler Expo. During her talk, she kept repeating “run your own race” – inspiring words that I needed to hear at the time. It can be an emotional struggle when I want to run but my body won’t let me. It is especially difficult when I see my identical twin sister running consistently and surpassing her race goals.

I’ve learned that I cannot compare myself to my twin or any other runner. I cannot even compare myself to the runner I was before I got sick. My body has changed and my running has changed. I have become the “go with the flow” slow runner and that is the runner I am meant to be today. I am truly grateful for every step that I am able to run. I appreciate every moment when I run – that is why I run without expectations, without time goals, without music, without a Garmin, but always with gratitude.

On her photo, Joan Benoit Samuelson wrote “Wishing you a great run through life” and I am determined to do just that!

My twin and I dubbed ourselves “Twins Run in Our Family” since we are identical twins and opposite runners. We run together to support Alex’s Lemonade Stand for Childhood Cancer in memory of Leah’s brother-in-law Michael who died of leukemia on March 17. 2003. We’ll run the Broad Street Run (May 6) Chicago Marathon (October 7) and Goofy’s Race & a Half Challenge (January 12 & 13).


Donna Noble said...

I hope the pacer is working well for you. We have a 3 year old with Short Bowel Syndrome who has a feeding tube and has a central line. While I am not the one suffering I still see the effects it has on him daily.
I admire your strength

TWINS RUN in our family said...

Thank you for taking the time to write and for your kind words. It must be very difficult for you to see your son suffer with Short Bowel Syndrome. I greatly admire your strength as a parent of a child who struggles with chronic illness.
Take care,

Diana Odom said...

After dealing with chronic pain for 2 years, I was finally diagnosed with Ehlers Danlos Syndrome, a connective tissue disease and fibromyalgia. It hurt to sleep, to walk long distances (especially at my happy place-Walt Disney World) and hurt to just be touched sometimes. My Dr. suggested exercise to increase endorphins and I became a runner. I've never been althletic at all, but at 28, i'm now a runner and half marathoner and training for a full in Jan.
The biggest blessing, as long as I run at least once a week, I have no pain or inflammation!! It's a miracle that I wish everyone could benefit from, but I know every case is different but finding a hobby or activity you enjoy always helps the soul. Praying for you with your condition, it's inspiring to know other peoples journey as well!

TWINS RUN in our family said...

Hi Diana,
Thanks so much for sharing your inspirational story and keep us posted on your journey! :-)

TWINS RUN in our family said...

My guest post "Running with Chronic Illness" on Running With Sass Blog! :-)

Sarah said...

Wow, I'm a distance runner with idiopathic gastroparesis too! I got sick at 15, was diagnosed at 16, and received a fundoplication at 18 (which failed 2 years later). I am now 21 and a marathoner, head over heels in love with running. GP is a huge struggle that is hard to understand unless you experience it first hand, and it's kind of cool to know that I'm not the only one out there fighting it with distance running :) I've sort of abandoned my old running blog, but here's a lengthy and slightly dramatic post that I wrote last year about how my sickness has affected me and my running:

TWINS RUN in our family said...

Hi Sarah,
Thanks so much for taking the time to share your story! It's so helpful and inspiring to meet other runners who also have idiopathic gastroparesis! Can't wait to read your post about your experience! :-)
Take care,

Unknown said...

I also have EDS and just started running to prove to myself that I refuse to be debilitated by this-what a blessing that I found this post! I started running last Tuesday (inspired by the Boston marathon!) and since then I have run five times and have had only two days of my usual debilitating, frustrating pain. I'm sure this will be, quite literally, a life-saver, as I embark on a regular training plan to run several times a week! At 20 years old, I needed *something* to allay the constant pain, and this seems to be it. I'm so inspired by this conversation about running with chronic illness and more motivated than ever!

TWINS RUN in our family said...

Hi Rachel,
Thanks so much for taking the time to write. You're such an inspiration to me, too! :-)
Take care,

FoodFaithFitness said...

I am so sorry you have GP. I know there aren't many resources out there for it. I hope your pacemaker brought you relief. My heart goes out to anyone suffering from this disorder.

TWINS RUN in our family said...

Thank you so very much for taking the time to write and for your kind words. It helps so much to have the support of those who care.
Take care,