The Wobbly Cyclist – A Guest Blog Post

Introducing the Wobbly Cyclist, a good friend of VOLT and all-round legend who has been using a VOLT e-bike since 2020 to explore more outdoors. While it may sound simple, nothing could be further from the truth. Inspired by her story and in keeping with Ehlers-Danlos Syndrome awareness month we invited the Wobbly Cyclists to share her encouraging story for our latest guest blog post…

E-biking with Ehler-Danlos Syndrome and fibromyalgia

My Wobbly Cyclist Facebook bio is “50+ cyclist and mobility scooter user and neurospicy spoonie with Ehler-Danlos Syndrome and fibromyalgia”, which sort of about sums me up, but there’s a lot more to me than that.

My basic background is that I am 57 years old and have struggled with pain and mobility issues since my teens, but they became progressively worse during my last pregnancy in 1999 and deteriorated further after I had flu that Christmas. 

After years of chronic pain and fatigue, I was diagnosed with fibromyalgia in 2009, which was when I first realised I was never going to get back to my pre-pregnancy mobility and finally decided to go on permanent pain medication. It took another 8 years of poor pain management and horrendous side effects before I finally found a medication plan which worked for me, and I was able to cope with my daily pain levels and start living again. 

In 2017, I was diagnosed with Hypermobile Ehlers-Danlos Syndrome (hEDS), a genetic connective tissue disorder, that I’d unknowingly had all my life and was probably the underlying trigger for the fibromyalgia. The combination of both health conditions mean my mobility has slowly declined over the years to the point where I am now a part-time wheelchair/mobility scooter user and have to carefully manage my daily life to make sure I have enough ‘spoons’ to get through each day and not cause a fatigue crash.  The EDS also means I have gut issues, as well as some dysautonomia symptoms, which can affect my balance and make it difficult to regulate my temperature, especially during hot weather.

I am lucky enough to live in a beautiful part of Scotland and, whilst I’ve never been ‘adventurous’, I did enjoy getting outside, so when my declining mobility began to restrict my access to the outdoors, I tried to adapt, but soon became frustrated with the limitations my mobility scooter placed on me. 

Luckily, I started working for an outdoor and learning adventure charity and, after years of badgering, my Outfit Moray colleagues finally convinced me to try a Volt electric bike in March 2020 and I am so glad I did!

The electric motor took the resistance out of the pedals and I could actually cycle. It was amazing to be able to move so quickly under my own steam and I was immediately hooked. Lockdown happened, which meant I was able to practise on quiet roads and regain my confidence. I hadn’t been on a bike in over 20 years, yet here I was cycling around and exploring places that had been impossible for me to get reach before. Suddenly, I was ‘living the life of adventure’ and I loved it, and I wanted more!

I am now on my second Volt Bike and absolutely love my Pulse LS. The motor is my constant friend and I love having the different power levels, which I can adjust according to my strength and stamina on each ride, meaning I can still cycle if I am not feeling 100%. 

Cycling hasn’t cured my fibromyalgia and Ehler-Danlos Syndrome, but it has helped me cope more with the mental impact of having chronic health conditions. The pain and fatigue are still very real, and require a lot of medication to manage, but being able to cycle has given me a new lease of life and sense of adventure.