Dinkykts EDS Diaries

21/04/2026

COMPLICATED is coming to Apple TV on May 19. You can also watch it now on the complicatedthemovie.com online store.

14/04/2026

Today has been a bit of an emotional rollercoaster.

I received two letters in the post.

The first was the most beautiful, thoughtful surprise and honestly it nearly had me crying in a good way. Such a lovely, kind and loving gesture. I’ve even hung the wooden plaque up where I can see it from where I’m resting, and it means so much to me already. 💖🥹 It was such a needed reminder of kindness, love and the fact that there really are people who care.

Then I opened the other letter… the one about the respiratory team appointment… and that did make me cry, but out of sheer frustration.

As many of you already know, I’ve already spoken about what happened with that telephone appointment and how the calls were handled. So to then open a letter saying that I did not attend was incredibly upsetting to read, especially when I know exactly what happened.

I’ve only just phoned the outpatient office to explain what really happened, and that was when I was told that the respiratory team had marked me as not attending and discharged me. The lady I spoke to was kind and said she would send them a message with what I told her and see what they say, but it’s just left me feeling so frustrated and worn down.

It’s not just about one letter. It’s the stress of having to keep chasing things up, correcting things, and trying to make sure the truth is actually heard and acknowledged. That takes such a toll.

It’s strange how in the same day, and in the space of opening two envelopes, you can feel both so loved and so upset.

One reminded me how much kindness can mean.
The other reminded me how exhausting it is to keep dealing with systems that leave you feeling unheard.

I’m so, so grateful for the love, thought and support behind the first letter/gift. It truly lifted me today more than I can say. And I think that’s what I’m trying to hold onto tonight - that even on hard days, kindness still finds a way through. ♥️ ###x

14/04/2026

We have great news! On May 19 during EDS Awareness Month COMPLICATED will be offered on the premiere digital platform Apple TV!

This is a wonderful achievement, but we need the best possible placement so that the film will get the viewership that it deserves. Here's what you can do:

CALL TO ACTION 1: If the film gets enough pre-orders on Apple TV then it will get the highest possible placement on the platform, ensuring high visibility. Please pre-order now and share this call to action with others. It will help our cause immensely:
https://tv.apple.com/us/movie/complicated/umc.cmc.6u10itqj2ei16o26u1ofsptda

CALL TO ACTION 2: Distributors pay attention to IMDb ratings. Please, everyone, go the to COMPLICATED page and rate the film on IMDb with a "10" in the upper right hand corner of the page. We need over a hundred ratings to get positive traction with distributors. It only takes a few seconds:
https://www.imdb.com/title/tt19064024

Thank you!

09/04/2026

I just wanted to do a proper post about my EDS awareness stall on Monday in the fanzone at Barrow AFC and say a huge thank you to everybody who helped and supported me.

I’m really pleased to say that, so far, I’ve raised £75 for the charity, with more still to be added over time. Every donation, purchase, chat, share, and bit of encouragement has meant such a lot.

What makes it even more special to me is that, apart from a little bit of help, I prepared everything myself. From getting things ready beforehand to setting it all up, I put so much time, effort and energy into it, so I’m really proud of myself for what I achieved.

I also want to say a huge thank you to everybody who helped on the day itself, whether that was by helping practically, keeping me company, stopping by the stall, buying something, donating, asking questions, or simply showing support. It all mattered, and I’m so grateful.

A special thank you as well to Mannie for giving me this opportunity in the first place. I believe he has now left the club, so if anyone on here is friends with him, please do tag him so he can see this and know how thankful I am.

It was also a great learning experience for me. It felt quite different to the craft stalls I used to do to raise money for the charity, so it taught me a lot and gave me plenty to take forward into future events too.

Most of all, I’m proud that I was able to spend the day raising awareness for Ehlers-Danlos Syndrome, talking to people, sharing what Dinkykts EDS Diaries is all about, and doing something positive for a cause that means so much to me personally.

Thank you again to everybody who supported me. Your kindness and encouragement really does mean more than you know.

I’m hoping to hold more EDS awareness stalls in the very near future, so this is only the beginning 💛🦓

04/04/2026

Just a reminder; this Monday!! 💙 https://youtube.com/shorts/tNH5xbNf9cU?si=QITBlG4ZuMAxreOF

01/04/2026

A little reminder from today that telephone appointments are not always as straightforward as they sound.

I was waiting for my respiratory consultant to call today for my 4:30pm appointment. He rang at 3:58pm and again at 4:30pm, but both times the call ended so quickly that I barely had a chance to answer. The second time, I was completely ready, had taken my phone off mute, and was literally just about to swipe across when the call stopped.

It’s so frustrating, because this can easily be marked down as a “missed appointment” when I was actually available and waiting. Not everyone can answer a phone within seconds, especially disabled patients, chronically ill patients, or older patients.

After already feeling upset by my last experience with the respiratory team, today has just added even more frustration. Some days it really does feel like going round in circles 🫣🥺😠

30/03/2026

Hi, I’m sorry this is really late but I’ve been working on this.

It feels like there is a lot going on at the moment, so I wanted to sit down and write a little update with a bit of everything in one place.

29/03/2026

Shouldn’t laugh but can’t help it…

29/03/2026

27/03/2026

A little update from me today 💛

It’s been a bit of a mixed day if I’m honest. I’ve struggled with my breathing issues at times today and had to use my inhaler twice, and my right foot is still bruised and sore from when I injured it on the 15th March, especially when putting footwear on and off. So I’m definitely feeling a bit sorry for myself this evening.

On the lovely side of things though, I got to spend time with my sister and niece this afternoon, which was really nice and definitely one of the highlights of my day. Moments like that always mean a lot.

I’ve also had a little boost today because some of my awareness stall bits have started arriving. My new branded pens came today. They’re not my usual ones, as those were out of stock, and the logo branding is smaller than I expected, but they’re still nice and it’s lovely seeing things slowly start to come together.

For me, this stall means a lot. It’s not just about the items themselves, it’s about continuing to raise awareness of EDS/HSD, sharing my journey, and hopefully helping other people feel seen, heard, and understood.

So today has been one of those days with a bit of both - feeling rough in myself, but also feeling grateful for precious family time and excited seeing another part of this awareness project becoming real.

Thank you so much for continuing to follow, support, and encourage me and DinkyKt’s EDS Diaries. It truly means such a lot to me. 💛

18/03/2026

I’ll be doing my yearly Dazzle Walk again!! 🦓🚶🏻‍♀️👩🏻‍🦽

Join the Dazzle Walk this May! ✨

This May join in EDS and HSD Awareness Month, choose a time, location and distance that is right for you and get walking to raise funds for EDS UK. Dazzle Walk is an inclusive event. Whether you’d like to walk it, wheel it or use other aids – we encourage you to get involved however you can.

Register now and receive your exclusive Dazzle Walk fundraising guide and other materials, designed to give your walk that extra sparkle: https://dazzlewalk.ehlers-danlos.org/