Dinkykts EDS Diaries

31/07/2025

💭 Some days are heavier than others. Living with a chronic condition like cEDS can feel exhausting, isolating, and invisible. This little poem came from a moment like that—a quiet reminder that even the hardest days are still just one day at a time.

If you’re struggling today, I see you. You’re not alone. 💜

28/07/2025

🌿 Just for a moment… let’s slow down together.

I’ve just uploaded a new video to my YouTube channel — a gentle, two-minute breather for anyone who needs it. Whether you’re living with EDS, another chronic illness, or just feeling a bit overwhelmed by life, this is your reminder that rest is not a weakness — it’s a necessity. 💛

I created this video using peaceful clips from recent moments — planting in the garden, visiting calm spaces, and just letting myself be. No pressure. Just stillness.

🧘‍♀️ Take a couple of minutes to pause, breathe, and come back to yourself. You’re doing better than you think.

🎥 Watch here: Take a Breath with Me | 2 Minutes of Breath
https://youtu.be/GMtiAlTxC5M
💬 Let me know in the comments if it helps — and feel free to share it with someone who might need a moment of calm today.

Hi, I’m Katie — but you might know me as Dinkykts.I live with classical Ehlers-Danlos Syndrome (cEDS), and on this channel I share my journey, the ups and do...

26/07/2025

🌿 A little day out at the Abbey Mill Café 🌿

Today we went to the beautiful Abbey Mill Café and had some really lovely food (including a cupcake that was absolutely delicious 🧁). After eating, me and my Dad decided to go for a short walk — nothing too far — while my Mum waited for us on a bench nearby. It was such a nice, peaceful moment.

But on the way back, when we reached the gate near the café that separates the footpath from the café area, I tried to help hold it open using my feet so we could both get through. What I didn’t expect was just how forceful and heavy that gate was — it pushed my foot inward and trapped it between the frame and my wheelchair. 😣

Thankfully I had some pain relief in my bag and took it straight away. When we got home, we used my trusty deep heat roll-on (yes I know you’re supposed to use ice straight after an injury… but I much prefer heat on my skin!). My leg is now a bit swollen and bruised 🥹 so I’ve been resting it since.

💬 This is just one of those frustrating realities of living with classical Ehlers-Danlos Syndrome (cEDS) — I injure so easily. Something as simple and well-meaning as trying to help hold open a gate can turn into a painful setback.

But still — I’m really glad we went. It’s important to keep finding the little joys, even on the harder days. 💚

25/07/2025

I got over 20 reactions on one of my posts last week! Thanks everyone for your support! 🎉

25/07/2025

🌸 Rest Days, Niece Sleepovers & Real cEDS Moments 🌸

Hey everyone 💜

Today has been a bit of a rest and recovery day for me. We had my lovely niece staying over last night, and we had so much fun! She even gave me a full makeover — two completely different themes: one pop-inspired and one ballroom glam. Honestly, I think I might have a future MUA in the family! 🎨😆✨

But this morning, I woke up with pain in my side and my right hand playing up again. It started in my wrist (the one that likes to sublux 🙃), then turned into twitching, shaking, and a burning pain through my hand and middle finger. So it’s been one of those days where rest has been non-negotiable.

On a brighter note, I’ve been working on putting together a few little videos for the Dinkykts EDS Diaries YouTube channel this week! Hoping to upload the first one over the next few days. One is about embracing a small moment of calm 🧘‍♀️, and another shares what an evening looks like for me living with classical Ehlers-Danlos Syndrome.

Also — I’d love to hear your thoughts 💬
I asked this in a recent post, but I don’t think anyone replied — would you like me to share the videos from my other YouTube channel here too? They’re a bit more casual and creative, including mini vlogs and some lighthearted content. Let me know if that’s something you’d like to see on this page as well 💕

Thank you to everyone who supports this journey — whether you watch, comment, or simply take a moment to read these posts. It really means the world 💜

Gentle hugs,
– Katie x

23/07/2025

There is no need to apologize for any of these things.
✨🦽✨
Credit: Disabled by Society

22/07/2025

🌟 How I Keep Going… 🌟

People often see my smile, my positivity, the way I try to stay strong—but they don’t always see what’s underneath.

The truth is, it’s not easy.
But I keep going because of the few incredible people who support and care for me.
Because I choose to notice the little joys in each day, no matter how small.
And because I make space for things that bring me calmness, happiness, and strength—even if it’s just one small thing a day.

This is how I cope. This is how I heal. This is how I keep going.

🧡 If this resonates with you, you’re not alone.

21/07/2025

🌈 July is Disability Pride Month 💚♿️

It’s a time to celebrate disabled voices, stories, and identities—including those of us living with Ehlers-Danlos Syndrome (EDS). For many of us, disability isn’t just a diagnosis. It’s a daily experience that shapes how we move through the world—and how the world responds to us.

Disability Pride Month is about more than just awareness. It’s about acceptance, empowerment, and visibility. It’s about saying:
💬 “I’m not broken. I’m disabled—and proud of the strength it takes to live this life.”

Living with EDS can mean chronic pain, fatigue, joint issues, and constant advocating just to be believed. But we still show up. We still fight. And this month, we take pride in everything we are—because disabled doesn’t mean less.

🎥; The Disability Pride Month Flag
https://youtube.com/shorts/uNlnAuV_Ae0?feature=share

💚 Sending love to my fellow zebras and to everyone in the disabled community this July. You matter. You’re seen. You’re not alone.

Hi, July is Disability Pride Month and I wanted to tell you all about the flag and its origins. Please check out our website for more, such as our online sto...

17/07/2025

🌊✨ Mini Update + A Little Apology 💜 ✨🌊

Hi everyone! I just wanted to pop on and say I’m really sorry for the lack of updates lately – my last post was all the way back on 7th July! 😬

Truth is, I’ve been struggling quite a bit with fatigue these past few weeks. It’s not just physical tiredness – it messes with my memory too. I’ve found myself forgetting the simplest of things, even the things I actually want to do, like updating this page.

This past weekend though, we ended up having a last-minute weekend away at Ocean Edge in Heysham, and it was just what I needed. A bit of fresh sea air, laughs, a change of scenery… and of course, some classic arcade fun! 🎯🎉 (Mini vlog series coming your way soon!!)

👉 Would you like me to share those vlogs here on this page too? Let me know in the comments — your input means a lot 💬

Since getting back, I’ve been recovering (as you do when living with cEDS!) and finally catching up on all the things I’ve been forgetting. My dad hit the nail on the head last week when he said fatigue is probably the main thing you struggle with, and honestly? He’s right.

Also… the picture of me on the Donkey Derby arcade game — does that count as physiotherapy? 😂 And I gave another game a go where I had to throw things at targets — let’s just say my arm had words with me after that!

Thank you all for sticking around and for always being so supportive 💛 I’m doing my best, just taking it one day at a time.

Much love,
💫 Katie x

07/07/2025

📣 An Extra Rare Update About My cEDS

Hey everyone 👋🖤

I’ve shared a lot with you over the years about living with classical Ehlers-Danlos Syndrome (cEDS), but today I want to talk a bit more about something that makes my case even rarer.

🧬 I have a confirmed mutation in the COL5A1 gene, which is one of the two genes known to cause definite classical EDS. This gene is responsible for making type V collagen, which helps give strength and structure to skin, joints, and connective tissues.

But here’s the bit that makes my diagnosis even more unique…

🔎 The second part of my mutation in COL5A1 has never been seen before.
Not in medical records. Not in any other known case.
Which means… I’m even rarer than most people with cEDS.

Because of this, I’ve been included in the 100,000 Genomes Project — a national study looking into rare diseases and unexplored genetic mutations. I’m proud to be a part of something that could help shape the future of diagnosis, understanding, and support for others like me. 💛

⸻

🍼 A little reminder of my journey so far:
• Diagnosed with EDS at just 2½ weeks old
• Born with an umbilical hernia, heart murmur, and was extremely floppy and weak
• Kyphoscoliosis appeared very early
• I’ve had vascular issues (like perniosis)
• I’m partially deaf, and had speech and language therapy as a child
• For years, there was confusion around my EDS type due to overlapping symptoms
• I finally received a clear classical EDS diagnosis in my thirties

⸻

💬 I’m sharing this because I know many of you have followed my story for a long time, and I wanted to let you in on something that’s helping move rare disease understanding forward.

🔬 My body may be stitched together differently,
but I promise — so is my strength. 💪💜

Thank you all for always cheering me on.

Love,
Katie

03/07/2025

📸 Just popping on to say hi 👋
I hope you’re all doing okay 💛

I’m having a nice quiet day of rest today—it’s so important to listen to our bodies and give ourselves permission to slow down when needed. 💐

Earlier this week, I emailed my local MP about the upcoming welfare changes and the impact they could have on disabled people like myself. I was surprised to receive a reply back, and it reminded me just how important it is to keep using our voices and sharing our truths.

When I was at BC, they taught me that I had a voice—and I’d like to think that through running Dinkykts EDS Diaries, I’ve found the perfect platform to use that voice for the greater good. 🧡

To everyone who follows this page, subscribes to my YouTube channels, or supports my little online store—thank you. Your support means the world, and it’s because of you that I’m able to keep raising awareness and speaking out.

Sending love and gentle hugs to anyone who needs them today 🤗💛

02/07/2025

Thank you Jameela Jamil for making our invisible visible and raising awareness of the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD).

EDS and HSD are often invisible and dynamic conditions. Symptoms can fluctuate, making them hard to understand, especially when they don’t fit the one-dimensional view of disability. That’s why it’s so important our community is believed, validated, and supported when seeking diagnosis, care, and understanding in school, at work, and in wider society.