Life with Muscular Dystrophy
This is a guest feature with Carrie Aimes, founder of Life on the Slow Lane, lifestyle and disability blog. Carrie has lived with muscular dystrophy for 29 years (her whole life). And we took the opportunity to ask her a few questions.
Please can you tell us a little bit about your disability?
I have the progressive neuromuscular condition – Ullrich congenital muscular dystrophy (UCMD). It is effective from birth, and causes the muscles throughout my body to deteriorate over time. I was able to walk short distances, with the aid of leg splints, until the age of ten. However, I am now completely non-ambulant and therefore use a powered wheelchair for mobility.
I have an ‘S’ shaped curvature of the spine that has not been surgically corrected. This has a great impact on my respiratory function, which is my primary concern these days. Throughout my life, I have experienced multiple bouts of pneumonia, pleurisy and acute pneumothorax (a collapsed lung), resulting in prolonged hospital admissions.
What are your favourite hobbies?
I’m a bit of a film buff and I listen to far too much music – if that is even possible? I’m very much an arty type – I love painting, drawing, crafts, and taking trips to the theatre. Here is where I’ll have to admit that, I’m a big Strictly Come Dancing fan!
I also love to get out and explore. Sometimes it’s nice to just get in the car and drive, to nowhere in particular. I live rurally and so there are many winding, country lanes to investigate.
If you could have any superpower in the world, what would it be?
Wow, this is a tricky one. I think for me, it would have to be the ability to fly. I often feel restricted by the fact I am unable to get up and walk around, whenever and wherever I want. Being able to fly anywhere with ease would be so liberating.
Overseas travel for me is quite a challenge! I would love to see much more of the world but I am very much put off by past experiences with air-travel. So, to simply fly myself to other countries would be pretty amazing!
What’s the biggest obstacle you’ve faced with your disability?
There have been many over the years – practical, social and emotional. I think, for me, one of the main issues is trying to overcome societal preconceptions and attitudes towards people, like me, with disabilities. Even in this modern age, I would argue that I am in fact more disabled by society than my actual condition. By this I mean that, unnecessary limitations are inflicted on the disabled community through ignorance, a lack of accessibility, facilities and support. To overcome this, an increase in awareness, education and inclusivity is required.
What inspires you most in the world?
I’m inspired by certain people; their grit and determination. They need not necessarily be high-achieving academically, financially or career-wise. For some people, due to their circumstances, just getting out of bed or leaving the house is an overwhelming struggle, both physically and mentally.
Life can be tough and sometimes you feel like you can’t catch a break. It’s easy to admit defeat and give in. But those who rise above adversity and face the challenges life throws at them, are the people who inspire me most.
Thank you to Carrie for taking the time to complete this question and answer post. We’re sure you’ll continue to inspire others. To learn more about Carrie and Ullrich congenital muscular dystrophy, visit her blog: www.lifeontheslowlane.co.uk
If you would like to feature on Disabled Living’s blog about your disability please send an email to: firstname.lastname@example.org