My name is Jen and I use bike riding as a way to manage the chronic pain and autonomic dysfunction that comes from having Ehlers Danlos Syndrome.
There is a physics law that says “a body in motion stays in motion.” While the idea is about science - and the idea that an object moving through space will continue to move, in a straight line, unless another force acts upon it - the phrase has become a bit of a personal mantra in my journey toward better self care.
The conditions that I have are incurable. I’ve required surgeries, invasive procedures, and months of therapy and that has been the easy part of my journey. While I have been impacted by these conditions for the duration of my life, my day-to-day became hardest to manage after a cross-country move, while working full time and pursuing a graduate degree. I love to learn, to volunteer, to laugh, to achieve my goals - and sometimes, that meant that self care wasn’t a priority.
After my brain surgery, that had to change.
While there are many ways I choose to prioritize my health, from mid-day naps to eating gluten-free, today I want to talk about staying in motion. Before my diagnoses, I was regularly at the gym. From childhood to college, my time included baton twirling, competitive swimming.. high school tennis, and hiking for fun. Then, I had a cranio-cervical fusion and I was forced to give up a lot things, including my days at the gym.
With the help of a great physical therapist, I learned that it was safe to move and that actually, my body felt better when I did.
While my life is no longer full of cardio and weight-training, I’ve learned to take care of myself with regular bike rides, and swims at our local pool. It’s hard to look at other patients with chronic pain and explain this idea, that our bodies in motion will stay in motion, and yet, it continues to prove itself true for me.
After my surgery, I couldn’t ride a bike. And it would have been easy to not try to again. (I'm thankful firr the push I got from Schwinn to get back on the bike.) My first trips to the local pool didn’t include whole laps swam in front-stroke; sometimes I could only walk in my lane or swim 10 yards at a time. Instead of giving up, though, I found ways to make these motion part of my day-to-day. Moving became my self care.
The more that I moved, the easier moving became. After all, a body in motion stays in motion.
In terms of practical ways to integrate motion into my every day, using my bike as a means of transportation has been key. While we live in a suburban area, I loved being able to use my bike to travel from one side of my downtown college campus to another.. whether to make a meeting, or just to grab a chai tea.
Spending ten, thirty, or even sixty minutes on my bike has given me time to clear my head, to build better relationships with the people I love, to increase my physical strength, and to care for myself.
Because self care isn’t always first nature, I recommend downloaded Self Care Catalysts' free Health Storylines app. Created by a passionate team of self care advocates who believe that the key to healthcare innovation is to hear the voice of the patient, the app helps patients to personalize their care by journaling their thoughts and emotions, by setting reminders for taking medications, for developing and checking in with a Circle of Support and sharing medical information with his or her care team.
So tell me, what does self care mean to you?
Self care looks different for each of us and I’d love to know ways you care for yourself as part of your everyday routine.