Dinkykts EDS Diaries

07/03/2026

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04/03/2026

💜 A message for partners, friends and family of someone living with Ehlers-Danlos Syndrome.

Living with EDS can mean dealing with chronic pain, fatigue, fragile skin, joint instability and many other challenges that aren’t always visible to others.

One of the most important things the people around us can do is listen and believe us. Those of us living with EDS know our bodies better than anyone else.

I’ve written a short blog post explaining how partners, friends and family can better support someone living with Classical Ehlers-Danlos Syndrome (cEDS) and why understanding really matters.

💜 Read the blog here:

https://www.worldofdinky.co.uk/supp

If you’ve read this far, leave a 💜 in the comments so I know you made it to the end. Feel free to share if you think it could help others understand EDS a little better.

If someone you love has Classical Ehlers-Danlos Syndrome (cEDS), you may sometimes feel unsure how best to support them. EDS is a complex connective tissue disorder that affects the body’s collagen, meaning the structures that normally give strength and stability — such as skin, joints, and tiss...

03/03/2026

03/03/2026

One minute you’re sat at the bingo, lipstick on, eyes down, enjoying the buzz and the little thrill of “just one more number”…

And the next minute?

You’ve completely crashed into an unexpected nap under a blanket.

This is such a classic EDS moment.

From the outside, it looks like a normal evening out. A bit of fun. Nothing extreme. I even won just over what I paid out - so a small victory there!

But what people don’t always see is the energy cost behind it.

Bright lights. Noise. Sitting upright for a while. Concentrating. Social interaction. Even just getting ready and leaving the house. When you live with Ehlers-Danlos Syndrome, all of that quietly adds up.

Sometimes your body doesn’t gently warn you it’s had enough. It just pulls the plug.

There’s no dramatic build-up. No huge flare. Just:
System overload. Sleep mode activated.

And I’ve learned something important over the years - that crash isn’t weakness. It’s not laziness. It’s not “being dramatic.”

It’s my nervous system and my body saying, “That was lovely. And now we rest.”

I used to fight it. Push through. Feel frustrated.
Now? I wrap up, close my eyes, and let my body do what it needs to do.

Living with EDS often means your energy doesn’t behave in predictable ways. You can look fine one minute and be completely wiped out the next. That doesn’t make the good moments any less real - it just means they come with a recovery period.

If you’ve ever had one of those sudden crashes, you’re not alone. Your body isn’t betraying you. It’s protecting you.

Drop a 💤 in the comments if you know exactly what I mean.

28/02/2026

Today is Rare Disease Day 2026.

“Rare” doesn’t mean insignificant.
It doesn’t mean invisible.
And it doesn’t mean easy.

Around 1 in 17 people live with a rare disease - that’s over 300 million people worldwide. Many of us look “fine” on the outside while managing things people don’t see every single day.

I’ve put together a short video to mark Rare Disease Day this year. It’s simple, honest, and about what rare really looks like.

If you have a few minutes, I’d really appreciate you watching - and if it resonates, please share it. Awareness starts with conversation.

See us.
Hear us.
Believe patients. 💛

Rare Disease Day 2026 | Rare Doesn’t Mean Invisible

Today is Rare Disease Day 2026.“Rare” doesn’t mean insignificant. It doesn’t mean invisible. And it definitely doesn’t mean unimportant.Around 300 million pe...

26/02/2026

Imagine if care homes and hospitals had some of these… what do you think about this? I wonder how comfortable it actually would be, I obviously don’t need anything like this but if I was in hospital, it would make it easier and safer for me. 🖤

21/02/2026

A little glimpse into last night / this morning with EDS…

I woke up through the night needing the bathroom. I was half asleep, dealing with my usual aches and pains, nothing out of the ordinary for me. I managed to get back into bed and doze off again.

But then I woke up with the strangest, awful muscular pain in my tummy.

It wasn’t a “tummy bug” feeling.
I didn’t feel sick.
I didn’t need the bathroom.
I didn’t have a temperature.

It felt muscular. Deep. Tight. Like everything had seized.

I couldn’t move. I couldn’t sit up. Even rolling slightly felt impossible.

So I did what most of us with chronic conditions end up doing - I started pressing and tapping around my stomach like doctors do when they assess abdominal pain. Trying to work out: Is this muscular? Is this something else?

Eventually I managed to sit up just enough to take a few sips of water.

This morning, my dad had already been up and kindly brought me some pain relief, which did ease the tummy pain - thankfully.

But when I properly woke up today, I had terrible chest pain.

My chest felt tight. Heavy. Like someone was sitting on me.

I used my inhaler to see if that would help. But the chest pain is something I’ve told doctors about before… and nothing really seems to get done about it. Some days it genuinely feels like what people describe as heart attack symptoms - tightness, pressure, discomfort - and that’s scary to sit with.

On top of that, for the past however long, I’ve been struggling with:

• My hips
• My feet
• My right hand (as well as my already bad hand)

It honestly feels like I’m falling apart some days… or like someone has a little voodoo doll of me and is having fun with it.

The reality of Ehlers-Danlos Syndrome isn’t just stretchy skin or flexible joints. It’s random muscular pain. Chest pain. Joint instability. Exhaustion. Waking up feeling like you’ve run a marathon when you’ve done nothing but sleep.

I’m okay. I’m more comfortable now. Just very tired.

And sometimes that’s the hardest part - the constant unpredictability and the sheer fatigue that comes from fighting your own body.

If you read the whole thing, drop a 🦓 in the comments - zebra club checking in.

Photo of me is from a few weeks ago, and the one of Pixie was taken just before.

If you’re having one of those “what on earth is my body doing?” days too, you’re not alone 🤍

20/02/2026

🎙️ My BBC Radio Cumbria Interview - For Those Who Missed It 💜

A few months ago, I had the honour of being interviewed on BBC Radio Cumbria to talk about living with Classical Ehlers-Danlos Syndrome (cEDS), raising awareness, and why I created Colouring Through Chronic Illness.

I’ve recorded and uploaded this mainly for my own memories - something I can look back on and feel proud of - but also for anyone who didn’t get the chance to listen to the interview on the BBC website at the time.

EDS is often misunderstood. It’s not just stretchy skin or bendy joints - it’s chronic pain, fatigue, instability, fragile skin, and constantly having to explain your body to professionals.

In this interview, I share:
💜 What life with EDS really looks like
💜 Why listening to patients matters
💜 The inspiration behind my colouring book
💜 Why awareness and education are so important

Younger me, who felt isolated and different, would never have imagined speaking on the radio about EDS. That’s why this means so much.

If you’d like to watch or listen, here’s the link:
🔗 My Radio Interview For Those That Missed It!!

https://youtu.be/2t7g4Y1Jg84?si=HdZ30eTMZK54E7tY

If you think it could help someone understand EDS better, please feel free to share 💜

Enjoy the videos and music you love, upload original content, and share it all with friends, family, and the world on YouTube.

20/02/2026

Everyday eating with EDS and HSD: chewing, swallowing, and beyond

Christina Semonick is a qualified Speech and Language Pathologist in California, and we are excited to welcome her for a new webinar next month!

Christina will explain some of the issues around speech-language, swallowing, chewing, and tongue resting posture. She will provide some practical, evidence-based techniques to help.

Her expertise lies in assisting older children and adults with speech, swallowing, chewing, and breathing concerns that co-occur with orofacial pain and sleep apnea. Christina also has hypermobile Ehlers-Danlos syndrome (hEDS) herself.

When: Tuesday, March 31st 7.30pm
Where: Click here to book your place to join us on Zoom Webinar https://shop.ehlers-danlos.org/product/subject-everyday-eating-with-eds-and-hsd-chewing-swallowing-and-beyond-31-03-26/

18/02/2026

A very proud moment today - my colouring book Colouring Through Chronic Illness is now available in-store at Heaths, Barrow for £10.

Seeing something I created sitting on a real shop shelf is such a special feeling, and I’m incredibly grateful to Heaths for supporting a local disabled author and small creative project. £1 from every copy continues to go to EDS Support UK to help raise awareness of Ehlers-Danlos Syndrome.

If you know anyone locally who loves colouring, local landmarks, or supporting small creators, please feel free to share this post so it can reach the people who might enjoy it most - your support truly means more than you know. 🖤

17/02/2026

12/02/2026

Here’s my new hair 💇🏻‍♀️