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Lymphedema

My Bicycle, My Friend

We have just kicked off our I’m A Survivor race challenge, so I felt it was incredibly appropriate to share this story.

Guest blogger J. Lobb of the UK rode 100 miles on Sunday May 12, 2019.  She writes about her journey in learning to adjust after finally receiving her LE diagnosis in June 2018 post cancer 10 years ago, finding a sense of community, and achieving what few even without lymphedema can do.

Read on for her inspirational blog post.


Before lymphedema I was very fit and healthy, ran two marathons and plenty of half marathons; felt running was my passion and a release for my mind too.

Whilst waiting for my diagnosis of lymphedema I found myself unable to run or do any gym work due to the painful swelling of my leg without compression. After diagnosis, I started to work on getting my fitness back. I taught myself to swim properly and overcame my fear of putting my head under water. Within a few months, I was doing full front crawls in the pool, face down in the water. I was trying to get my running back on track, but it still made my leg swell and painful. I decided to try cycling and went out on my old mountain bike.

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Before I knew it I was riding 25 mile long rides. Noting the positive effect it had on moving the fluid from my leg, I decided to upgrade my bike and buy some clip in pedals and shoes to help me keep up with my friends. After riding my new bike in clip in shoes/pedals only 3 times, I decided to take a cancellation place on a cycling holiday to the Pyrenees in France with friends.

I still didn’t have the right compression grading, but I got out there and biked for 6 days solid, riding some of the toughest mountain routes of Tour De France. From our group, I was the first woman to cycle to the top of the Tourmalet Mountain and also best 7 men in our group too. Being out on my bike in the mountains was so liberating and inspiring.

Every day I forgot about my condition and my leg.

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My fellow guests and friends were amazed at my grit and determination and ability. I can honestly say that the holiday was a life saver. It was just meant to be, taking a late notice cancellation, being out in the mountains and sunshine feeling free and liberated was exactly what I needed to help me to come to terms with my diagnosis.

Since that holiday I have become to be grateful for my friend – my bicycle. For that is now how I feel about my bike, that we can go out together and go out at any pace we choose, any destination we want, and we can be free together. For that duration, I can forget about all of the emotions attached to living with lymphedema.

Fast forward 6 months, and I have just completed my first 100 mile ride. I completed it in 6 hours riding at an average of 16.6mph. I rode the 100 miles with a very supportive friend who doesn’t judge me and cares for me and shows kindness and friendship just as we should all care for each other. We rode the first 50 miles with no stop, then the second 50, eating on the go. It was a game of endurance and the last 10 miles were challenging as my energy levels dipped mostly down to lack of nutrition. I felt a wash of achievement and pride.

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The next day the official photographs were loaded online and my friend emailed me a photo of us both. I was mortified and embarrassed and ashamed because all I saw was my giant leg wrapped in grade 3 flat knit compression. I cried and went into myself and decided I would stay by myself from now on and not go out into such public events again. I don’t want to be known amongst other fit athletes as that girl that has the big leg. I snapped at my friend unreasonably too.

To help me through the emotions, I posted my thoughts on the Facebook group, The Lymphedema Running & Fitness Club. I was bowled over and humbled by all of the kind messages and words of support that so many strangers took the time to post for me. I say strangers as I have never met any of the Facebook group members, however I soon realised that these people aren’t strangers, they are friends, sharing the same emotions and feelings and helping each other through the good times and the bad. These kind, supportive words and empathy built my confidence back up. I apologised to my friend (who didn’t judge me one bit) and last night I got back on my bike and rode a nice relaxed 30 miles ride again to reconnect with my beautiful bike.

Happy days wonderful people. Remember, always be kind to each other, it makes the world go round.

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