My Summary of 2023!

Discussing the pricing.

Hi everyone! As many of you who follow us over on our Facebook page Dinkykts EDS Diaries, you will be aware that we are coming up to 10 years since we began, back in February 2013. So slowly, we are looking back on the positives of our campaign work. I believe in celebrating these milestones and why not?!! While the odd bit of Dinkykts EDS Diaries has received bits of help from various individuals, the majority has been done by myself (Katie) so anything that has been done is incredible. I know that we haven't done huge things, what we have done is wonderful and I am proud. Looking back, we never did manage to organise a family fun-day and that was one of the reasons why we began this campaign but due to the nature of having a rare disease like Ehlers-Danlos Syndrome, you just never know what life throws at you. Perhaps in the near future, we can actually organise a family fun-day? Hopefully this time, I won't end up in hospital (twice) haha! I have always wanted to go out in the community, whether it's going into schools, colleges, medical panels or having a stall where I meet random members of the public and raise awareness, and hopefully fundraise at the same time. I did get a taster of going into classes at college when I attended my local sixth form college and I really enjoyed it. We will be showcasing whatever we do on our YouTube channel as that's our main focus of awareness work. We also have the whole month of May to do lots of things as that's EDS Awareness Month and we want your ideas/suggestions! So definitely more highlights to come in 2023 and beyond!! Love DinkyKt

Hello, on the 6th February 2023, it'll be the 10th anniversary of Dinkykts EDS Diaries and of course, we will be celebrating this milestone! One thing for sure is that we will be doing a livestream, and on this live, we'll be doing the lucky dip raffle. we have sold some of the numbers already, but will need to sell more so that we can finally do it. :D Once the prize is chosen by the winner, there will be a donation made to the Ehlers-Danlos Support UK charity so definitely pick your numbers and soon! It'll be £1 per number and you can pick as many as you wish or you can just pick the one. We would preferably be paid via PayPal. Message us if you have any questions or anything. The prize will be something from the online store... there's plenty of wonderful products to choose from! Click at the top left to go to the store. Do you have any other suggestions in how we can celebrate this milestone, in how we can raise awareness and fundraising money for charity, do share with us. We have thought of one or two ideas so far but more suggestions/ideas are definitely welcome. Maybe you could do something at home, in the workplace/school or somewhere else to raise awareness? We can't believe we will be celebrating ten years, absolutely crazy! but we feel super proud of the journey that we have shared together because without your support and kindness, we wouldn't be here today, so THANK YOU!!! Love DinkyKt

Hi everyone! So here we are at the end of the year 2022, and I'm writing this post to share a few thoughts, hopes and wishes with you all. I apologise in advance if I ramble a little and go off on tangents at any point, but that's just me being me. Like many previous years, there's been ups and downs. Just like so many other people across the world. The downs are not 'downs' as such, but difficult times that have been challenging. The year started off with saying goodbye to my dear Auntie who is now with my late Grandparents and my Uncle. I'm hoping that I'm making them all proud of me and will continue to do so for as long as I live. Throughout the year, I have struggled with my health and it has put things on the back burner such as my awareness work. My awareness work is something that gives me focus, helps passes the time and making me feel better about myself knowing that I could be helping at least one person. I feel like I’ve neglected it a little bit which has been hard because I have always been a determined type of person. In the new year, I’m hoping to really get it going again, and perhaps even find someone who could help me with it as I have my Facebook page, my EDS/Disability YouTube channel, fundraising and my online store. It’s a lot for little old me to try and do all by myself especially when I’m not feeling too great. Obviously it has to be someone trustworthy and who is good with social media as well. It’d also be really fun to have someone who I can bounce ideas off with and other things. Due to my health issues, it makes it harder for me to get out as much. This has made me feel lonely, isolated and alone at times and I miss the companionship of seeing friends. It does make me value my friends even more and also those that I speak to on a daily basis who happens to live far away. I’ve had a few trips away to Morecambe/Lancaster, Blackpool and to Manchester. It’s always a battle with doing as much as I can and pacing myself at the same time whenever I’m away from home. They were fun times! My niece made me very proud when I went to watch her in the dance show that she was in at my local theatre and seeing her performing/doing something that she really enjoys, made me happy for her. I have enjoyed my filming, editing and uploading my videos on both of my YouTube channels. One thing I hope for in the new year is to meet my goals on YouTube as well. I always appreciate it when people make the effort to like, share and subscribe, so thank you! There have been many hospital appointments, various tests and lots of tears. It can be frustrating dealing with medical professionals sometimes especially when you feel like they’re not understanding what you’re telling them and you have to push on at them to actually help. On the other hand, one appointment which is definitely positive and that is that I’m getting a new wheelchair!! Woop!! I can’t wait! I have had my current wheelchair since a week after my 30th birthday which was in 2015, so over seven years ago and I don’t fit in it very well anymore. Hopefully I’ll have my new one in a few months time. Keep your fingers crossed! 🤞🏼it is basically very similar to the current one but it has more support for me and they are building arm-rests into the molding which I’m certainly looking forward to! My best highlight is going to see Blue and meeting them for the second time (please read my last post as I talk more about it there). I’m so thankful for Catherine for taking me and I really enjoyed our time together. It truly made me happy knowing that my favourite member, Duncan, who even took the time to read my post which was in the shape of a letter and a fun little poem. One of the things that has helped me cope with this past year has been Barrow AFC, my local football team. They have shown me kindness, support and inclusivity. I know that a lot of this is down to the lovely Kelly and I’ll never be able to thank her enough. I absolutely loved the hospitality experience. There’s so many friendly faces that I see when I go to the football, even on social media with the other fans. I’m a part of their Disabled Supporters Trust, even though I’m unable to attend their meetings, I still feel included and listened to if I have any issues. This also lead me to have the opportunity to write an article for the club which I’m proud of. Also being able to meet some of the players and interact with them has been great, although I haven’t met many of the current team, yet. They did have one last surprise for me where their captain had phoned me to wish me a merry Christmas but unfortunately, I was unable to take part (sadly and gutted about it still!). This was a part of the club’s Christmas Giving Week. Also I’m closer to getting my first book published, hopefully in the new year, as I’m just sorting it out. I need to work on a covering letter and a synopsis to send off to publishers. The few people that have read some of it have said it’s really good which is a relief! I’m thankful to my cousin, Dean for helping me with this. Let’s hope that by this time next year, I’ll be a published author like him! 🤞🏼📕 The first out of many books, I hope, as one will be a collection of my poetry. My family and close friends have really helped keep me going this year so I’m extremely grateful. I’d be lost without my family and friends. They’ve been there through the highs and the lows. Now none of us can predict what will happen during 2023 but we can only hope for the best possible, and that it isn’t too rough of a ride, because I want to keep on making memories in the best way that I can. Anyway, this post is definitely way too long but thank you if you have read until the very end. Happy New Year to you all and I wish you lots of love, happiness, peace and good health. See you in my next post… on New Year's Day 2023!! Love DinkyKt 🖤

Hey everyone! It's been a few weeks (at the time of writing this) since I was in Manchester and having the time of my life there. I don't even know if anyone will get to read this post but like with anything that I do or write, it is written from the heart. This past few weeks has meant that I have been recovering due to the tiredness, pain and over exerting myself from the travelling, enjoying the show (even managed to dance like I said I would to the guys - think it was mainly to Lee I said it to) and tried to sing along despite my breathing issues, and also fitting in a lot of activity in such a short time. The build up to going to Manchester, and to the arena has been quite a long process for various reasons but I was mostly excited. Also it had been 2019 when I had my last trip to the city and so much has happened since, for both me personally and for all around the world. This past year has been extremely difficult for me due to my health. It has taken its toll on me both physically and emotionally to be honest with you. Normally I am able to bounce back, often with a smile on my face but it has been so much harder. Having CEDS (Classical Ehlers-Danlos Syndrome) means that it affects me in many ways as it is a multi-systemic connective tissue disorder, one of my main features is Kyphoscoliosis. (I have two curvatures in my spine/chest) but with the CEDS, it has weaken my muscle tone and my organs are often not where they should be (it's always fun when having ultrasound scans watching the sonographer trying to locate what is what etc haha!). It has started to affecting my breathing, now I have Obstructive Sleep Apnea and other breathing issues as well. Some of the things I struggled with on a daily basis is fatigue and chronic pain but this has increased due to the newer issues. I won't even talk about my anxiety issues as that could keep me here writing this all night and would probably bore whoever does read this, but it's not surprising why I do struggle with it due to all of my various health issues. I'm also not explaining everything that I am for sympathy but to help whoever does see this gauge some understanding of where I am and why I'm writing this post. You see I'm from a small town so going to a city like Manchester is always exciting for me but it is definitely a big change. It's a big deal with the travelling and the pace of city life. Anyway, I'm digressing here. I first did a meet and greet with Blue back in 2015, and it was at a much smaller venue (which I prefer, although the accessibility access isn't always so great). I loved this M&G, the guys were so kind and caring. They made me feel special, and I appreciated that they took the time to listen to me talking about the EDS Awareness work that I work so hard at doing whilst encouraging me to keep at it with it. This happened because Simon had noticed my left hand which got me talking about it. So I was a little anxious about this M&G and if it would be just as good this time round. Maybe due to how I've been feeling a lot this year, it probably made me more anxious, I'm not sure. I didn't even know or think that they would remember me. You'll be glad to know that they did! Again, the kindness and care, was there. Duncan asked me how I was doing. In that moment, for the first time in a long time, I felt great. The sweet gestures that they showed me such as shaking my hand, holding my hand and kisses on the cheek mean a lot to me and I consider myself an affectionate person, so I appreciated this from them. It sounds weird but we always have an idea of what someone might be like and I feel like the guys are exactly like I imagined them to be like. After the initial introductions, I could feel myself relaxing around them which I think is a good reflection on the guys. They made me feel special, beautiful and important. I’m going to summarise everything now. One thing is that I am so thankful that I have been able to meet the guys twice and have such a fab time. I will for sure keep these wonderful memories for the rest of my life. Coming away from this last M&G, it has left me feeling like I’m stronger than I was previously, it’s given me a boost. I never knew how much I needed this to happen and for it to boost my morale as it had been so low this year. My only wish is that I would love to spend longer with the guys (although I’m sure many fans would probably like this!) to be able to chat about different stuff, take selfies and just relax. One thing I do the M&G for is because for those mere moments, I can forget about my daily struggles, be the person that they talk to and listen to, to feel included as many times in my life, I’ve either had people talking to the person with me than to me or exclude me in conversations and events. I’ve never felt like this with the guys. I really enjoyed the show too. I still don’t have a favourite song from the new album but ones that I do listen to a lot is either Ultraviolet or This Could Be Love. I do have an all-time favourite song though and that’s Best In Me. The harmonies are beautiful and it’s so simple. The only thing is the show finished early and would have loved it to be longer as it went so fast! Maybe the band can come to my home town and do a few shows at my local theatre (I’d be there every night showing my support!) for many reasons. Haha! In fact, Antony has been once when he was in Poster: The Musical with co-stars such as John Altman, Sam Kane etc which was fab! Okay, I didn’t plan on writing this much and thank you if you are still reading. Writing has always been my forte when it comes to expressing myself and sometimes it’s isn’t always easy to say it out loud. Since 2001, I have been a loyal fan and will continue until my end. In a way, I feel like we have grown up together although they never knew I existed until we met on the Colours Tour, and it’s been great. As creative writing is something that I have spent many years doing, I have written a poem. At first glance, it seems like just a general, cheesy poem but reading between the lines, it tells a little story about myself. It was fun writing this and hopefully you'll enjoy what I've done. You help bring out the best in me No matter where life takes me, I'll come back to you When I see you live, it's definitely paradise For those few hours, I truly feel alive You make me wanna all rise to your hits Life makes it harder for me to bounce back these days Now I struggle to breathe easy due to my health issues One thing for sure is that I'm not yet broken Home is where I spend most of my time But I"ll always be guilty of being a fan You deserve to feel like the king of the world I'll be right here waiting for your next tour Hopefully it won't be too long for the adventures But that depends on if you come back again soon There will never be no goodbyes from me One love to you all in Blue Love Katie (@DinkyKt online)

Time to make your orders in time for Christmas!! Check out our online store.

I have received news that there are now glass jar soy wax candles instead of the original ones so I obviously had to replace with the new soy wax candles! They have a pleasant natural aroma. I imagine these will sell really well as who doesn't love a candle to wind down to and especially ones that are more eco friendly. As with all of my products on my online store, everything has the wonderful eye-catching World of Dinky logo on it which makes everything unique! Thank you for taking the time to read this post and I hope to see lots of orders being made for these lovely candles! Love DinkyKt <3

Hi everyone! I hope everyone has had a good weekend and that you are ready for a brand-new week just like myself. I wasn't expecting to be writing this post today but I felt strongly about the situation that happened at the Oscars event so here are my thoughts. Now I must admit that I have never watched the Oscars as I find these award ceremonies a little boring and a little pretentious although I do enjoy seeing what everyone wears. I have however seen clips over the years. So in this year's Oscars, there was a situation between Chris Rock and Will Smith. I don't follow Chris Rock and I have never seen any of his work, I don't think, so I can't say whether this is what his comedy routine is usually like or not. I feel like comedians really need to start thinking about the jokes and how they may affect people especially those that are the butt of their jokes. For many years disabled people have been made fun off by comedians. It's time to stop it. What is fun about targeting someone because of their disability? Disabilities come in all different forms. Both visible and invisible. Each disabled person is affected differently whether that's physical, mentally and can have a huge impact on our lives. Sometimes it can be devastating. Jada Pinkett Smith has Alopecia which is an autoimmune disorder. The amount of courage it must take for Jada or anyone who has alopecia or associated disorders etc, I can't even imagine it. I can only imagine how much confidence and support it would take for Jada just to be able to leave the house, never mind going to an event like the Oscars which is shown worldwide. I love how she has learned to embrace the situation and take control like she has, so much admiration for her! I don't have Alopecia but I do have a severe form of Kyphoscoliosis (double curvature of the spine) and I am extremely thin, and it really does take a lot of courage and determination to leave the house, wear the things I wear and remind myself that no one is looking at me, or thinking negative about the way I look but then you see something like this happens, and it is so hard to not let it upset you. I'm just watching the clip of what happened, Will was sitting there laughing along until he saw her face where she is clearly upset by the joke and then he reacts to it. It's making me think of the people who are happy to sit and laugh at jokes on someone else's expenses and only cares if it's about yourself or someone that they love. Meaning unless it affects them directly, then they don't care about other people, their feelings and situations. This is something that I have seen a lot over the pandemic which saddens me. Now I'm not saying that Will only cares about anyone else beside himself or his loved ones but this is a great sample I think. Will Smith has every right to defend his wife but the way he went about it that's wrong. And I'd like to think that he is old enough and wise enough to be able to control himself. I know that human beings are reactive and we get caught up in the moment but that doesn't excuse violence. He has fans from all ages and it is not a good way of defending someone. It is the wrong message. Violence is never the answer. Not in any situation. I imagine seeing this can be triggering for some people. I hope by what happened here can make a positive change and remind people that people have feelings. Especially those of us who are disabled here often the target of these jokes! Nor should you make a joke about someone's appearance in general. This is not about taste because this is certainly not tasteful humour. Many of these jokes aimed at disabled people are often because of a lack of awareness and understanding. I always ask 'how would you feel if someone was targeting your loved one about their appearance/disability and knowing it was hurting them?'. We are often taught if you don't have anything nice to say then don't say it at all, and I think this should definitely apply to comedians. Perhaps if people learn and understand then maybe we can be kinder to each other. What might just be a joke to one person may be devastating for someone else. I really hope that both Will and Chris can learn from this. My heart goes out to Jada and to anyone was has been the butt of someone's jokes and I hope that they are all okay. Thank you for reading, Love DinkyKt xx