Dinkykts EDS Diaries

12/02/2026

Here’s my new hair 💇🏻‍♀️

11/02/2026

Over the last weekend I was really struggling with my hip - the pain made even simple movements difficult, especially lifting and moving the top of my leg. Then on Monday my back flared badly as well, to the point where the pain literally took my breath away. I couldn’t even reach across my bed without sharp pain, and my hand and hip were also playing up. By tea time I felt completely wiped out.

I was so thankful that my niece was there to keep us entertained. She’s incredibly understanding when I’m unable to do certain physical things, and that means a lot. I used to feel guilty for not always being able to do more active things with her, but I’ve realised that being present, spending time together, laughing, and creating memories in different ways is what truly matters.

Yesterday I was very tired - likely the after-effects of the previous few days - and I attended the funeral of a lovely lady I had known for many years. Today my hip is still a little problematic and my back feels tender, but I managed to get out to have my haircut. Let me know in the comments if you would like me to post a photo of my new haircut. 💇🏻‍♀️

Living with EDS often means navigating unpredictable pain, fatigue, and limitations that people don’t always see, but it also teaches you to appreciate the small wins, the supportive people around you, and the moments of connection that make difficult days easier.

I do have something exciting that I’ll be getting sorted, and I’ll share more about it either tomorrow or Friday. Sometimes it really does help to talk to the right people 💙

07/02/2026

Pixie’s been to the furdressers to her fur dyed and we’ve gone back in time to my last wheelchair. I think it’s where we’re designing new merchandise. 😂😀😀

04/02/2026

People often see photos like these and think,
“Oh, that’s just stretchy skin.”
Or even, “That’s a cool party trick.”

And to be honest, that’s often one of the main things medical professionals think about when they think of Ehlers-Danlos Syndrome too - loose, stretchy skin.

But it’s not just that.

My skin is fragile, delicate, and easily damaged. I bruise very easily, sometimes without remembering any knock or bump at all. Bruises can appear out of nowhere and take a long time to fade. My skin can tear more easily, heal more slowly, and react badly to things most people don’t even think twice about - like plasters, tape, pressure, or minor trauma.

This is part of a connective tissue disorder, which means the body’s tissues aren’t as strong or resilient as they should be. It doesn’t just affect skin - it affects joints, healing, pain, fatigue, and much more.

Growing up, the loose skin and bendy joints were often the most visible parts of my condition. As a child, doing things like stretching my skin or twisting my joints actually helped me make friends at school. Other kids were genuinely curious, asked questions, and wanted to understand. That curiosity led to conversations - and friendships grew from there.

But just because I could do those things doesn’t mean I should have.

I don’t advise anyone with EDS to twist their joints or show off flexibility. It might look harmless, but it can cause real damage over time. What people see as a trick is actually strain on already vulnerable joints.

And the challenges don’t stop at everyday life.

Even medical tests - things that are meant to help - can be problematic, especially when professionals don’t listen.

Something as “routine” as being connected to a monitor - the machine with the sticky pads attached to your skin to check heart rhythm or pulses - can cause injury for me. The adhesive can tear my skin, cause bruising or bleeding, and leave marks that take weeks to heal.

When I explain this and ask for adjustments, I’m not being awkward or dramatic.
I’m trying to prevent harm.

But too often it’s brushed off with,
“We use these on everyone.”
“It’ll be fine.”

Except I’m not everyone.

Living with EDS means my body reacts differently, and standard procedures aren’t always safe. When that isn’t taken seriously, something meant to be simple and non-invasive can become painful, damaging, and completely avoidable.

Advocating for yourself when you’re already unwell is exhausting.
Being hurt during medical care because your condition wasn’t listened to is even harder.

So when I share this, it isn’t for shock value.
It’s for understanding, education, and listening.

Because loose, stretchy skin isn’t a novelty.
It’s a symptom - and one that comes with real consequences.

💙

04/02/2026

31/01/2026

Happy weekend, lovely people 🤍
I really hope you’re all managing to have a gentle, kind one - whatever that looks like for you.

For once, I’m actually having a quiet weekend, and honestly… it’s exactly what my body and mind have been needing. No rushing, no pushing - just resting without guilt.

This morning I woke up to Pixie sat watching me, miaowing softly. She could have just been attention-seeking (she is a cat after all 😅), but it really does feel like she does this more when I’ve had an episode of sleep apnoea and my breathing has been more of a struggle. Animals have such an instinct for when something’s different, and whether coincidence or not, it’s oddly reassuring.

Living with EDS means listening to subtle signs, learning when to slow down, and accepting that rest is part of caring for ourselves - not something we have to earn.

Sending gentle thoughts to anyone else needing a slower weekend 💙
Be kind to yourselves.

31/01/2026

It's the Day of the Zebra!

Ever wondered why we have a zebra in our logo, Ezra as our children’s book and mascot, and zebra merch in our shop? It’s because in medicine, doctors are taught: “When you hear hoofbeats, think horses, not zebras.”

For those with Ehlers-Danlos syndromes (EDS) or hypermobility spectrum disorders (HSD), that often means being overlooked or misdiagnosed. But zebras DO exist, and recognising EDS and HSD in clinical care is crucial for earlier diagnosis and better symptom management: exactly what we are pushing for in our campaigining.

A group of zebras is called a dazzle, and every May for EDS and HSD Awareness Month, we come together for the Dazzle Walk to raise awareness and vital funds to support people across the UK. Are you joining this year? https://www.justgiving.com/campaign/edsukdazzlewalk2026

30/01/2026

29/01/2026

💛 A little announcement… 💛

I’m really excited (and a bit emotional!) to share that I’ve written and published my second book - a gentle companion to DinkyKt’s EDS Diaries: Colouring Through Chronic Illness.

This new eBook is a calm, comforting read, created to sit alongside the colouring book. It’s for those quieter moments when your body needs rest, your mind needs reassurance, and you just want to feel understood and less alone.

The eBook is available on Amazon for £2.99, and it’s also included in Kindle Unlimited, so you can read it there at no extra cost if you’re subscribed.

If there’s interest in this becoming a small paperback version, please do let me know - I’d love to hear your thoughts 🤍

This one feels very special to me, and it feels like a natural next step in the DinkyKt’s EDS Diaries journey. Thank you, as always, for being here and for supporting everything I do - it truly means more than I can put into words 💚

29/01/2026

28/01/2026

Just a little heads-up… I’ve got an announcement coming tomorrow evening around 7pm 👀💚

27/01/2026

From the moment I woke up this morning to now, my foot has been hurting me. It’s not my dodgy one but my ‘normal’ one. It’s in a similar place as my dodgy one where it hurts. Although it doesn’t feel like it’s subluxed. Let’s hope it feels better tomorrow. 🤞🏼♥️