Pathfinders Neuromuscular life

Blogs, News and Features from the Neuromuscular Community

Congratulations to Claire D’all! You’ve won our June Monthly Honours!

Claire is 26 and has been recognised for sharing her story and experiences through her blog and public speaking. She has Congenital MD and has recently moved into her own place.

“I started my blog in October 2016 however I had a security issue with my blog last year, so I had to restart it around 2021. It was actually my mum and our friend that encouraged me to start my blog. I always spoke to family and friends about my experiences as a powered wheelchair user and how I would get annoyed when people would make unwelcomed assumptions about me and say it is so good I’m out and about just for being out shopping. They said I should share my story and change those assumptions.”

Claire also enjoys sharing tips and things she’d learned with other people and the feedback she gets makes the whole process especially rewarding.

As you can imagine, it can be difficult to think of new ideas to keep material fresh and unique but says there’s no need to pressure yourself and overdo it, especially when it comes to blogging.

“When I first started my blog I would pressure myself that I needed to post every week at the same time each week but over the years I stopped doing this as I felt I was just posting for the sake of it. So, I now just post when I have something to share. I’ve had a busy few months getting back into a routine at work since the pandemic started and I moved out at the end of last year so I’ve not posted on my blog for a little while but, will hopefully post something soon.”

“Before the pandemic, I would speak at various events about different aspects of my life. In my first speaking event, I was a keynote speaker for PAMIS where I spoke about my life up until then, including healthcare, social care, and education. After that everything started to open up for me. I have spoken about my time at Rachel House which is a respite place run by CHAS and why the service is important, to various universities about my own university experience and what helped me, I’ve spoken to student nurses about my experience in healthcare and how I manage my health, I’ve spoken at national events about transition processes, been interviewed by the BBC about my transition experience and to STV about employment during the pandemic.”

Some of you may also be familiar with Euan’s guide and Claire has been one of the contributors since 2017. She comments “A big part of independent living is being able to access venues without stress which means accessibility information” – something I think everyone will agree is much needed.

Life has changed recently for Claire in that she has moved out and is living independently. She had a stressful time during this process. To anyone about to take this step she says “Everyone deserves the chance to live the life they want and not just what is available. It may take a while for your voice to be heard but it is worth it in the end.”

Check out Claire’s blog here: https://www.facebook.com/ajourneyinmywheels

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