My Bike & Lymphedema

It’s been a minute since I have written a personal blog post, and I have been thinking about this topic for quite some time — my newfound love for my bicycle. In May of 2018 I bought it in the hopes of using it around the neighborhood as sort of a casual way to #movethatlymph. A corny bucket list thing to do, and it was super cheap at a local sporting goods store.  My husband scoffed at the idea when I bought it. He predicted that it would sit in the garage and rust. Every so often I would take it out, but recently I have been dedicated to riding and have distance goals in mind.

Before we get into my bike story, I have to share something else which I feel is important.  If you are not familiar with my personal blog posts or story, they are always twofold. The LE I understood as a child of a parent with it, and the LE I have now as a full grown adult and living with it for 25 years.

Training Wheels Off

When I was a kid, my parents left sports activities up to my Dad, even though he had lymphedema in one leg.  I remember nagging my Dad for weeks and weeks to take the training wheels off my bike cause I was ready for the big wheels. There were some kids my age on my street, and it just seemed like I was the only one left that had a baby bike.

One Saturday he crouched down and said, “Today we will take off your training wheels.  You will help me by passing the tools. A bike is not a toy. It is something you take care of properly.  Do you understand me?”

Yup, understood.

Then he said that famous line many of us know so well.

“You know I have this leg…”

We didn’t have a diagnosis back then, so it was always “this leg.” I remember looking down at the swelling.

“Before we start today, you need to understand and agree to a few things.  Because of this leg, I will not be by your side. I cannot run with this leg. You will fall, and I will not be able to catch you.  It’s going to hurt when you fall. If you cry, your lesson stops and we put the bike up for tomorrow or another time. This doesn’t mean I don’t care or don’t love you. I just can’t move fast with this leg.  I can’t run. You need to learn how to ride it with as few falls as possible. Understood?”

What?!! PRESSURE!!  I remember not agreeing at first. He walked away to get his toolbox to give me time to process I guess.

Circle of Life

In today’s world we refer to what my Dad did and said as self care, setting boundaries, and level setting expectations of his disability. He was counting his spoons.  

Most importantly, he stressed that it was not a matter of caring, it was simply reality.  How many of us with lymphedema or any chronic illness struggle with enforcing our limits or saying no in order to safeguard from flare ups and further complications?  He knew he was cellulitis prone and was not about to risk another bout from a scrape or fall to chase me on my new bike.

I remember hesitating but once the wheel came off I was excited again.  I fell many times that day and each time I looked up at him like he was going to change his mind about saving me. Nope. He yelled, “GET UP! Let’s go or we put it up!!!” As the years progressed, Dad did a lot of yelling at the roller skating rink, the softball field, the track field, and the basketball court.  “GET UP or we go home now!”

I laugh now thinking about it.  It must of looked like he was one of those sideline coach Dads, but I knew why and that’s what counts. I’m also aware now of how many steps it took to walk out to a field from a parking lot, etc.

Thank you, Dad, for all you did.  Now I enforce my own limits.

Little Red Corvette

A friend in the LE community says my bike reminds her of the song by Prince called, “Little Red Corvette.” It’s magenta, and I love it.  As I said before, it’s not fancy but it’s mine.  They say you never forget how to ride a bike, right?

I have gained a lot of weight due to issues I won’t discuss in this post. When I started riding, I was concerned about my weight and the effects on the lymphedema I have in both legs.  Unlike my Dad who was unilateral, I have both legs to worry about.  I was concerned about falling and bug bites along with exacerbated swelling, so I thought it would be good to share some tips I have learned as a pure beginner in this process.

As always, I am not a medical or physical training professional. Just a fellow patient sharing from a patient perspective.

Tips for Getting Started

The Saddle

The first thing I did was get advice from a friend who was an avid cyclist. She said the number one thing to get was a comfort seat. Oh wow!  I’m going to follow suit and advise you that one of the first things you will experience is numbness in your booty even with a shock absorber seat! Maybe it’s my weight, but I don’t remember saddle soreness as a kid.

To help with the soreness, I sat in an epsom salt bath which I had allowed to cool down to a tepid temperature. It was relaxing.

Hold my Beer, I Mean Water!

From my run/walk days, at first I was using a hydration pack as a backpack to hold my water bottle. It used to contain a reservoir or “bladder” with a hose for sipping, but I ditched that due to mold and bacteria concerns. Eventually I got tired of having to stop and pull it out of the backpack. Surprisingly, I found a really cute cup holder at Walmart.

Saved By The Bell

I decided to install a bell and cup holder two weeks ago.  Since I used my Dad’s tools, I wanted to call him and and say “Hey, I installed this using YOUR tools.” Just to hear him say, “I don’t mind if you borrow my tools, just put that * back where you found it, Girl!  Damn, can’t have nothing around here. Something is always growing legs and walking off!” Hahahaha

All kidding aside, I have more than a few near misses.  The trail I use is primarily used by families in our subdivision.  Many of them have small children, so they will take up the entire width of the path.  I did not realize how dangerously people walk looking down at their phones completely absorbed in their screen, or they will be talking on it.  Tons of reasons to get a bell. It’s a lot friendlier than “Hey, get out of the way.”

Beyond the above steps, I use sunscreen, sunglasses, and insect repellent to protect my skin and eyes from UV rays. I also try not to ride when the sun is hottest during the day.

I hope you enjoyed my story. Thanks for reading and feel free to sharing your story below.