Dinkykts EDS Diaries

22/01/2026

Some days, the smallest things are actually the biggest wins.

Today has been a full-on but productive day, and I’m definitely feeling the exhaustion now. I cooked steak for the first time with my dad’s help - he did the heavy lifting and I did what I could safely manage. With Ehlers-Danlos Syndrome, things like lifting pans, handling hot food, gripping utensils, or standing for any length of time can be really challenging physically. I can’t cut my own food, so it’s always prepared that way for me - and that isn’t a failure, it’s an adaptation.

Living with EDS means constantly adjusting how I do everyday tasks. My joints are unstable, my grip is weak, my skin is fragile, and fatigue builds quickly. Things most people don’t think twice about - cooking, cutting food, opening things - can cause pain or injury if I’m not careful. So I pace myself, accept help, and choose safety over pushing through.

Alongside that, today also involved dealing with the reality of disabled life admin. We received a parking penalty because my old Blue Badge was accidentally displayed instead of my valid one - despite it having been renewed. After speaking to the Blue Badge department today, they confirmed everything and are issuing me an urgent replacement. It was an honest mistake, and although frustrating, it’s one of those extra layers of stress that often comes with being disabled.

I’ve also had letters through today - one to arrange for wheelchair services to come and give my chair an MOT, and another explaining the process my GP needs to follow in order to refer me on to a specialist respiratory consultant at a tertiary centre. Important information, but still mentally and physically draining to process.

Add to that a small accident overnight where my cat Pixie caught my skin and drew a little blood - something that happens more easily with EDS because my skin is so fragile - and it’s been one of those days where everything adds up.

Despite all of this, tonight me and my dad are teaming up again to cook salt & pepper chicken stir fry for tea. We’re living like a king and queen today 😄 - proof that even on hard, exhausting days, there can still be moments of enjoyment, teamwork, and normality.

EDS doesn’t always look dramatic. Often it looks like quiet compromises, teamwork, medical admin, and celebrating small achievements that most people never have to think about.

Today, despite everything, I cooked, I coped, I advocated for myself, and I got through it. That counts.

If you saw the steak I cooked earlier, let me know in the comments how you think I did - it was my first time and I’ll tell you how I did it. 🥩🖤
And would you like to see a photo of our cooked salt & pepper chicken stir fry later? 🖤🍽️

21/01/2026

Hi everyone 👋
I hope you’re all having a good week so far - or at least one that’s being kind to you.

I wanted to share this visual today (thank you - I absolutely love it 💚) because it explains something people with EDS and chronic illness live with every day, but that’s still so often misunderstood.

When we talk about fatigue, we don’t mean “a bit tired” or “needing an early night”.

Fatigue is deep, whole-body and mental exhaustion - the kind that doesn’t disappear after sleep.

For many of us, fatigue can look like:
• Sleep that never feels refreshing
• Needing to rest after things others see as “small”, like showering
• Struggling to get out of bed day after day
• Brain fog and trouble concentrating
• Feeling heavy, like your body is weighed down
• Simple tasks feeling overwhelming
• Feeling exhausted by… pretty much everything

For people with EDS and hypermobility conditions, fatigue is rarely caused by just one thing. It’s usually a mix - poor sleep, ongoing pain, our bodies working harder just to function, nervous system issues, mental health, nutrition, and medication side effects. All of these can feed into each other and make fatigue worse.

Managing fatigue isn’t about “pushing through”.
It’s about pacing, listening to our bodies, resting without guilt, managing pain where possible, and being kind to ourselves.

If you live with this kind of fatigue - you’re not lazy, weak, or making it up.
Your body is doing a lot just to get you through the day 💚

⸻

👕 Quick question for you all - I’d really love your thoughts:

I’ve found a new T-shirt supplier who is cheaper, which could make the tees more affordable - but the quality isn’t quite as good as my current ones. Before I make any changes, I want to hear from you.

👉 What would you prefer? Type 1 or 2.
• 1️⃣ Cheaper T-shirts, even if the quality is lower
• 2️⃣ Higher quality T-shirts, even if they cost a bit more

(Feel free to comment too - I genuinely value your opinions.)

⸻

🎟 Lucky Number Raffle update:

I’m still running the raffle at £1 per number.
To make it viable, I need to sell more than 50 numbers - and so far we’ve sold 34 (thank you so much 💚).

I’ll add the list of numbers below so you can see which ones have already been sold.
If you’ve been meaning to grab a number or share the post, I’d really appreciate it.

💚 And if this post or visual resonates, please feel free to share it - it really helps raise awareness and support Dinkykts EDS Diaries. No pressure at all, just if you’re able.

Thank you, as always, for being such a kind, understanding, and supportive community. You mean more to me than you know 💚

19/01/2026

💛 A little idea I’ve been sitting with… 💛

I’m hoping to start taking EDS awareness out into the community in a more hands-on way.

I’d really love to have a small information stall at places like:
• schools & colleges
• workplaces
• healthcare settings
• community events

The idea would be a calm, approachable stall with:
🖤 easy-to-read leaflets about Ehlers-Danlos Syndrome, especially Classical EDS
🖤 information about EDS Support UK and the incredible work they do
🖤 a few bits of my merchandise (T-shirts, pens, notebooks, calendars)
🖤 a link to my book on Amazon for those who want to learn more
🖤 and a small donation box to support EDS Support UK

EDS is still so misunderstood - especially by people who support, teach, or employ those living with it. I truly believe having real conversations, sharing lived experience, and providing clear information in everyday spaces could make such a difference.

If you work in, know of, or are connected to a place that might welcome something like this - or if you’ve seen similar stalls work well - I’d really love to hear from you 💬

This is very much about awareness, understanding, and connection, not pressure or sales.

Thank you for always supporting what I do and for helping invisible conditions feel a little more visible 🖤

17/01/2026

I’m going to see this this coming Saturday at Barrow Library 12pm if anyone wants to go and show their support. ♥️

16/01/2026

Hi, I’ve been working on updating my website and I’d love to have your feedback please!!

Welcome to World of Dinky - a home for my blog posts, creative projects, and advocacy work, including Dinkykts EDS Diaries. This is where I share life, learning, and creativity through chronic illness. You'll also find my online store, featuring books, T-shirts and many other fabulous creations all....

14/01/2026

Before I say yes, there’s a lot to think about.

This isn’t overthinking.
It’s not being difficult.
It’s living with EDS.

Every decision comes with consequences our bodies feel long after the moment has passed.

🦓

10/01/2026

Hi everyone,
I’m sorry I’ve been really quiet on here. I’ve not been feeling great this week. I hope everyone is doing okay. ♥️

02/01/2026

I don’t usually share numbers, but tonight I’m allowing myself a little moment of pride.

My colouring book Colouring Through Chronic Illness has now sold internationally, with copies reaching the UK, Canada, and Australia. 🇬🇧🇨🇦🇦🇺

What started as a small, personal project to help people cope with pain, fatigue, and the emotional side of chronic illness has quietly found its way to people across the world - and that honestly means more to me than I can put into words.

I donate £1 from every copy sold, because giving back has always been part of what this campaign is about.

Thank you to everyone who has supported Dinkykts EDS Diaries in any way - whether that’s buying the book, sharing posts, or simply being part of this space. It truly means so much. 💛