Dinkykts EDS Diaries

12/06/2026

🎉 My New Paperback Book Is Now Published! 🎉

I’m delighted to share that A Gentle Companion to the Colouring Book is now available as a paperback on Amazon for £5.99. 📚💜

Some of you may remember that I previously released this as an eBook. This new paperback edition has been expanded and now includes additional chapters and new content, making it the most complete version of the book.

Written from my own lived experience of Classical Ehlers-Danlos Syndrome, this gentle companion offers reassurance, encouragement, reflections, and practical insights for people living with EDS, chronic illnesses, disabilities, and other long-term health conditions.

Whether you’re newly diagnosed, have been navigating chronic illness for years, or simply need a reminder that you’re not alone, I hope this book brings comfort and kindness on the difficult days.

This book isn’t about fixing yourself.

It’s about meeting yourself with kindness.

💜 30p from every paperback copy sold will be donated to Ehlers-Danlos Support UK.

Thank you to everyone who has supported DinkyKt’s EDS Diaries and my awareness work over the years. Your encouragement means more than you know.

📚 A Gentle Companion to the Colouring Book
✍️ Katie Wearing
🦓 DinkyKt’s EDS Diaries

💷 Paperback: £5.99

🔗 Link to buy your copy:

A Gentle Companion to the Colouring Book: From Dinkykts EDS Diaries

11/06/2026

A little respiratory update 💛

For the first time in a while, I feel like there may actually be a bit of hope.

Between the GP trying to help, the specialist consultants at Lancaster, and now the consultant I spoke to today, things are starting to feel a little more joined up. Nothing is fully sorted yet, but it finally feels like people may be listening, looking at the bigger picture, and trying to move things in a more positive direction.

The consultant (she was a new one to me) I spoke to today seemed to take on board that my symptoms have been getting worse, including the increased tiredness, headaches and breathing struggles. She also mentioned my restrictive lung disease and spoke about arranging further checks, including an echo and looking more closely at my oxygen levels / whether I may need an oxygen assessment. That is something no one at FGH has really mentioned to me before, so it definitely stood out.

We also spoke about inhalers. She acknowledged that the Fostair dry powder inhaler did not suit me and mentioned there is another version that works differently, but for now I’m to stay on Ventolin and be mindful of using it too much because of side effects like palpitations, tremor and a racing heart.

She also knows that I am waiting to see the specialist in Lancaster, and ideally some of these checks will be done before that appointment so there is more information available.

Although this appointment felt more positive, I do feel it is important to say that I went into it feeling very anxious and frustrated because of my previous experiences with the respiratory team at FGH. I also realised afterwards that I have still not received an apology from the team for the previous situation, which has been difficult to sit with. Only from a separate team at a different hospital which wasn’t their fault, but very appreciative of them doing so.

After everything I’ve been through with respiratory lately, I am still cautious, but this appointment did feel a bit more joined up and a bit more positive. Still a long road, but maybe a slightly more hopeful one.

🖤

10/06/2026

04/06/2026

📚✨ Little update from me…

This evening I’ve been busy working on turning my ebook, “A Gentle Companion to the Colouring Book”, into a paperback edition! 💜

I’m currently working my way through the formatting process and getting everything ready for publication. If all goes well and KDP/Amazon approve it, it should hopefully be available to purchase within the next few days. 🤞📖

I’ve also taken the opportunity to expand the book, adding several new chapters covering topics such as self-advocacy, dealing with guilt, celebrating small victories, finding community, and a special section for those who are newly diagnosed with Ehlers-Danlos syndrome. My hope is that these additions will make the book even more supportive, reassuring, and relatable for readers.

It’s been a bit of a learning curve (and there may have been a few moments of “where has my work gone?!” 😂), but I’m excited to see this little companion become a physical book that people can hold in their hands, pop in their bag, and turn to whenever they need a bit of comfort and understanding.

I’ll keep you updated as soon as I know more. Thank you, as always, for your encouragement and support. It truly means the world. ❤️

📚💜

03/06/2026

A quieter day for me today. ❤️

I’m spending today catching up on some admin duties, replying to messages, planning future content, and working on my EDS awareness campaign.

I’m also making sure to pace myself by spending some time resting, watching documentaries and YouTube videos between jobs. ☕️📺

There’s a lot of behind-the-scenes work that goes into raising awareness, but it’s all worth it if it helps even one person feel less alone or leads to a better understanding of Ehlers-Danlos Syndrome.

What are you all up to today? ❤️🖤

Lots of love,
Katie xx

03/06/2026

Showcasing Our New T-Shirt For Classical EDS Awareness Day

03/06/2026

💜 Looking Back at an Incredible EDS Awareness Month 💜

Throughout May, I shared a new video every day to help raise awareness of Ehlers-Danlos Syndrome.

From personal experiences and mobility aids to medical appointments, education and advocacy, together we helped reach thousands of people and start important conversations about life with EDS.

✨ 5,395 views
✨ 19.5 hours watch time

Thank you to everyone who watched, liked, commented, shared and supported the challenge throughout the month.

Every interaction helped spread awareness and remind people living with EDS that they are not alone. 💜🦓

02/06/2026

💜 The face behind Classical EDS Awareness Day 💜

This is the first official Classical EDS Awareness Day T-shirt, featuring the campaign theme:

💜 More Than Skin Deep 💜

Because cEDS affects far more than just the skin.

Official T-shirts are now available to order:

👕 Adult T-Shirts: £18
👕 Children’s T-Shirts: £15
📦 Plus postage and packaging

A small donation from every shirt sold will be donated to Ehlers-Danlos Support UK, with the remaining funds helping to support future awareness work and campaign materials.

If you’d like to order one, please send me a message.

📅 Classical EDS Awareness Day
💜 31st May
💜 More Than Skin Deep

30/05/2026

Day 30 of my EDS Awareness series is now live 💛🦓

As EDS Awareness Month comes to a close, I wanted to reflect on what this month has meant to me and why continuing to raise awareness of Classical EDS is so important.

A huge thank you to everyone who has supported, shared, commented and followed along throughout this journey. Your support means more than you know. 💛

🎥 Watch here: https://youtube.com/shorts/ghFilfKbW6Q?si=MA0vBqv2S5_GFJo5

And don’t forget… tomorrow is a very special day. 👀🦓💛

EDS Awareness Month is coming to an end, and today I wanted to refl...