I have several chronic illnesses and disabilities but Severe M.E. and Ehlers-Danlos Syndrome affect me the most, these cases secondary conditions and complications. Living with physical disabilities is really difficult and it does affect my mental health which I think is something that isn’t talked much about.
I’m a mobility aid user as my walking is unstable due to my FND as well as finding walking difficult due to my M.E. and dysautonomia. In March 2025 I finally got my GTM Mustang, a very lightweight active wheelchair. It has lightweight Spinergy wheels with CarboLife L ergonomic push rims with gekko grip on them. This wheelchair allows me to be an active manual chair user. Maybe one day I’ll need power assist like a SmartDrive but for now I’m okay. I do have my Batec, this is a power add-on that attaches to my wheelchair so I can zoom off. It allows me to leave the house and be outdoors. Since getting my Batec it’s massively helped my mental health. Just going for a ride around the block or to the post box to post my pen pal letters does my mental health wonders. It’s one of the best things I’ve ever bought.
I now live in my own little home, a little bungalow that I moved into in May 2023 that is just perfect for me and it’s wonderful to now have a place of my own. My home has been adapted for me (read how) plus I have a lot of tech that enables my independence. Living with multiple illnesses/disabilities can be hard but I have some lovely PAs and community nurses, community OT’s and physio’s and others, plus the support of my Dad too who make it possible for me to live here. Some days are obviously inevitably better or harder than others but I’ve managed this long and I’m determined to stay living here and I plan on living here for quite a while. It truly is my home.
I love being creative and I’ll give most crafts a try. I love making cards for my pen pals and volunteering with Cards2Warriors. I’ve also fundraised for charity in the past by selling my handmade cards too raising funds for different M.E. charities - check out my instagram account here.
Another hobby of my is pen palling. As great as a WhatsApp from a friend is nothing beats a letter in the post! I love how unique letter writing is and being so isolated because of my health and not having friends in person letter writing I find gives me that connection to the outside world - to read about other people’s lives and what they’ve been up to in their life. I have a big imagination so I think that helps. I love making each letter I send unique and I always love the idea of making postal workers smile with my pretty envelopes.
My bedroom is a place I spend a lot of time in. I have fairy lights put up that have pegs to display the mail I receive. These are cards from friends, pen pals, the CWC card swaps I do and Cards2Warriors mail I’ve received. It makes my bedroom really special to have this mail up along with other things when I have to spend so much time in bed because of my M.E.
As well as crafting I love books. One amazing thing is that I’ve regained the ability to physically read books again which feels pretty special. Since getting my Kindle it’s helped me to read books even more because I can make the book accessible to read. I love listening to audiobooks too which is still reading too, just in a different way. I like lots of genres young adult, memoir/autobiographies, true crime, psychological thriller, feminist nonfiction, science/medical nonfiction, disability fiction/nonfiction and more, as well as poetry too.
Other things about me are:
- I’m a Quaker
- Lavender, dusky pink and turquoise are my favourite colours
- I love glitter (which I think should also be a colour)
- I love Moomins
- I have far too many rolls of washi tape
- I also daren’t count how many bottles of nail polish I own!
- I love doing my nails and doing nail art
- I’d love to cuddle a koala
- I’m a Storyteller for the disability charity Scope
