I hope you’re all doing well today. As I sit writing this blog post, the weather is uncharacteristically inviting so I ‘jumped’ at the chance to lie in the sunshine; which is a rarity. Despite not being able to spend long outside because of my ME/cfs, I thoroughly enjoyed lying out on the grass, feeling the gentle breeze waft against my skin – the tingle of springtime warmth, and the smell of fresh cut grass drifting across the road. Beside me stood my wheelchair, the gold paintwork glistening beneath our hedgerows – and I was filled with a sense of utter appreciation for what I had previously considered a defeat; owning mobility aids.
Growing up, I didn’t need to use mobility aids until age 13/14 as up until then I had yet to experience the major onset of my underlying condition – Ehlers Danlos Syndrome; a connective tissues disorder causing a whole host of complex challenges. This condition was yet to be diagnosed, so I wrongly assumed that they would be a temporary measure before I ‘got better soon’ – and perceived them as a short-term inconvenience. Although as my symptoms progressed along with time, I slowly began to hate using my walking stick, crutches, walking frame, and wheelchair – I failed to invest in my comfort and sense of self-expression because I was living in a state of denial. I didn’t WANT to think of a future with mobility aids; it felt like I would be giving in.
The societal perception of mobility aids is that they’re clinical, temporary, and for people who can’t walk at all, or have injured themselves. It seems to surprise people to see a young person using a rollator, or a wheelchair user walking around. It causes some people to question a person’s condition, or need to use this equipment. This caused a sense of imposter syndrome because I couldn’t grasp why some days I needn’t use any aids, whereas most days I depended on crutches.
I want this blog post to serve as a memo for those who, like myself, didn’t hear this at the beginning of their journey:
Using mobility aids and supports is not giving in, it’s aiding in your wellbeing. No, you won’t necessarily become reliant on them, it’s entirely possible to use them whenever needed to assist you in your daily life. What is dangerous is pushing yourself and suffer the consequences when there are plenty of products out there that can help!
As mentioned in previous posts I lost a sense of self because my symptoms were so overwhelming and managing my condition is like a full-time job you can’t resign from; and soon life is consumed with pain management strategies, scheduling meds, booking and attending appointments, and researching treatments. But after realising this last year, I decided to take active steps to embrace and personalise my mobility aids, because after all they are an extension of ourselves and support us to live a fulfilling life.
Ways to personalise mobility aids
A few months ago I worked on a blog post series with Access Your Life (AYL) focusing on different ways to customise or personalise mobility aids; specifically centering around ways to customise wheelchairs.
However what we didn’t really touch on were aids such as walking sticks, rollators, or IV poles/stands. I have never personally required the use of a portable IV pole, however I have seen quite a few chronic illness warriors on Instagram who do utilise them; and I can only go off ways they appear to have personalised them. Such as using battery powered fairy lights around the pole, tinsel (during the holidays), patterned washi tape, or hot gluing diamantes to the base.
In regards to rollators, I have one but it is currently in storage as I am still unable to walk – however I shall definitely take a leaf out of Hannah’s book (from NotYourGrandmasUK) as she made over her walker whom she christened ‘Sheila’. Hannah runs a Facebook group called ‘Pimp My Mobility Aid’ which allows members to share tips and tricks on how they have customised their aids, along with a podcast called ‘Am I Disabled Now‘.
At the end of last year I discovered Neo Walk, which is a small business ran by Lyndsay – who describes her passion for making these bespoke, hand-crafted acrylic walking sticks by saying
“Gone are the days when walking sticks are wooden or only available in dull hospital grey. […] I use my Neo walking sticks every day, and every day somebody will ask me where I got my gorgeous stick, not why am I using it. That’s priceless.”
In conclusion, I strongly believe that we should embrace everything which can be of benefit to us, help us pace ourselves and live as happy, fulfilled, and colourful a life as we possibly can; as chronic illness can oftentimes leave us feeling bleak or consumed with darkness. We are the light we need to guide us, and we can venture forward without allowing ableism to hold this from us.