Dinkykts EDS Diaries

Dinkykts EDS Diaries

Hi everyone!!

So, I'm Katie! I like to raise awareness about Ehlers-Danlos Syndrome (EDS). It’s a rare, complicated multi-systemic syndrome. You’ll rarely see me without a smile! I hope I can help you learn more about EDS.

🖤🦓👩🏻‍🦽🦓🖤

My Orthotics Appointment

My Orthotics Appointment

Dazzle Walk May 2024

Dazzle Walk May 2024

My Hand Therapy Appt

My Hand Therapy Appt

My New Zimmer Frame

My New Zimmer Frame

Our New Hoodies!!

Our New Hoodies!!

New Calendars for 2024!!

New Calendars for 2024!!

How Do I Get On Trains?

How Do I Get On Trains?

My Issues With Socks!

My Issues With Socks!

Having My Bone Density Scan

Having My Bone Density Scan

May’s EDS Awareness Month

May’s EDS Awareness Month

Hello… 🙋🏻‍♀️

Hello… 🙋🏻‍♀️

Wheelchair Clinic

Wheelchair Clinic

Пікірлер

  • @Neville-N
    @Neville-N7 күн бұрын

    That's fascinating Katie. Well done for your contribution to Disability Pride Month! I've learnt so much from your channel.👍 Have a nice Sunday....the sun is coming out! Take care, Neville 👏🦓👏🌹🌹🌹

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries5018Күн бұрын

    Thank you Neville, I try my best. 🤗 I hope you’re enjoying the lovely weather we’ve been having lately. 🌞😀

  • @kennyguitarallen5662
    @kennyguitarallen566218 күн бұрын

    Nice one my mate

  • @Neville-N
    @Neville-N18 күн бұрын

    Hi Katie, that was brilliant! You are a shining star 🌟 🤩 ⭐ Take care, Neville 🌹🌹🌹

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries501816 күн бұрын

    Hi Neville, thank you. 🥰👩🏻‍🦽👩🏻‍🦽👩🏻‍🦽

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries501816 күн бұрын

    Thank you K 👩🏻‍🦽😀

  • @Neville-N
    @Neville-N21 күн бұрын

    Hi again Katie, I'm pleased your appointment was rearranged without too much delay. As with all orthotics sometimes just a small improvement can make a huge difference to the end user. You came away positive which I'm so pleased to hear. If it is more comfortable then that brings great benifits in wearability and day to day use.. From our own experiences the service provided has been from completely inadequate to excellent. I do hope you receive the latter. Best wishes & take care, Neville 🙂 🙃 🙂🌹🌹🌹

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries501820 күн бұрын

    Hello Neville, it was great being able to see them quicker than what they thought. I’m hoping it will fit me okay as he didn’t look at my foot properly but I’m sure he knows what he’s doing. 👍🏼 thank you. Let’s hope England bring it home!! 🏴󠁧󠁢󠁥󠁮󠁧󠁿🦁⚽️

  • @Neville-N
    @Neville-N20 күн бұрын

    @@dinkyktsedsdiaries5018 Let's hope so but not looking to good!⌛

  • @Hasan_mahmud50
    @Hasan_mahmud5029 күн бұрын

    What a wonderful trip down memory lane! It's heartwarming to see the joy and camaraderie during the dazzle walk.

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries501828 күн бұрын

    Thank you for your kind words.

  • @Hasan_mahmud50
    @Hasan_mahmud5028 күн бұрын

    Thank you too❤

  • @Neville-N
    @Neville-N29 күн бұрын

    Hi Katie, what a lovely video! I think you chose the most perfect day of the year to do your walk! It was a great achievement and real team effort! 👏 Take care, Neville 🙂🙃🙂🍀🦓🍀🌹

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries501828 күн бұрын

    Hey Neville, aww thank you! We ended up being very lucky with the weather. Thank you for your sponsorship too. Take care 🏴󠁧󠁢󠁥󠁮󠁧󠁿👩🏻‍🦽🚶🏻‍♀️🚶🏻‍♂️☀️

  • @mrkphilippines1194
    @mrkphilippines119429 күн бұрын

    A nice day in the sun.

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries501829 күн бұрын

    It was a lovely day especially with the weather. 🤩

  • @Neville-N
    @Neville-NАй бұрын

    Hi Katie, a very informative video on an important day of the year! Based on your figures there may be around 20,000 children annually in the UK alone born with Scoliosis! As you've said before an early diagnosis is important, so that help can be provided. I believe the outcome can be very good if treated from an early age. 😊 Having the best support at home as you have is vital. Overcoming all the hurdles along the way and learning to focus on your abilities rather than disabilities. Having goals and working towards achieving them. 😊 These have made you the inspiration that you are ❤ I know I've become a better person since I have followed your journey,😊 (I wasn't too bad before😂😂) Always room for improvement. I hope today is a good day for you and your family 👪 Take care, Neville 🙂🙃🙂🍀🌹🍀

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries5018Ай бұрын

    Hello Neville, I only wish I had more facts and info in the video but I was on a very tight short schedule for this so did the best I could in the time I had. It’s crazy at how many children have Scoliosis, and I agree. Early detection is brilliant especially with the waiting times for clinics nowadays which could mean the curvatures could get worse. Aww thank you: a lot of it with me is that I’ve not known any different and they monitored me closely growing up. Thank you for your support and lovely comment with the info. You and your family take care too. ☺️🦓♥️

  • @LorraineMccall-lx1vj
    @LorraineMccall-lx1vjАй бұрын

    does it have table and chairs on decking

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries5018Ай бұрын

    No, it didn’t. You could take the dining chairs out onto it though if you wanted to. It was more of a ramp but there was room to sit out on it.

  • @LorraineMccall-lx1vj
    @LorraineMccall-lx1vjАй бұрын

    does it have table and chairs on the decking

  • @Hasan_mahmud50
    @Hasan_mahmud50Ай бұрын

    Hi Katie, Wow, you make such beautiful videos! What is the goal of your KZread channel? Are you thinking about future monetization or something like that? Want to create your own brand. A new message for 2024. I visited your KZread channel, Your content is just wow but the main reason the video goes viral is video SEO and promotion of your video targeted audience. Your channel has only 162 subscribers and views are very low. Your SEO score is absolutely Low. 9 May 2021 Created your KZread channel. But accordingly not getting enough subscriber views like comments. Your video needs to be on-page SEO and Off-page SEO. Then you can see good results day by day And get lots of subscribers and views. ("As your youtube channel SEO partner, I aim to take your KZread channel to new heights and achieve lasting success")

  • @Neville-N
    @Neville-N2 ай бұрын

    It is easy to become isolated Katie. Even with a good support system around you. Talking through issues, sharing the burden. You'll find people will want to help or show where it is available. Being honest with yourself, accepting that you need help and then confiding with someone is the first step to improving mental health. That alone will feel like a great weight has been lifted. Well done Katie. That was quite a challenge. Your a great ambassador for the EDS community. 🦓🦓👏👏 Take care, Neville 🙂🙃🙂🌹🍀🌹

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries50182 ай бұрын

    It’s very easy to become isolated especially if you’re struggling mentally. I agree so much. Thank you, I’m proud of doing the challenge but I’m glad it’s over with now. Things will slow back down again now as I recover from it all. 😀🦓👩🏻‍🦽☀️

  • @Neville-N
    @Neville-N2 ай бұрын

    That is a very powerful message Katie conveyed with much emotion. You are so kind and generous in holding a hand out to help others in the EDS community. Take care and enjoy May 31st, your birthday and the end of your challenge.🎉🎁 🍾🎂🍾🎁🎉

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries50182 ай бұрын

    Thank you so much Neville!! 😀👩🏻‍🦽🦓🎁🥳☀️😍

  • @Neville-N
    @Neville-N2 ай бұрын

    Never take anything for granted is something I've believed in for many years. Enjoy the moment and the good people you have around you. And it's very true, the best things in life are free. We all have a lot to be grateful for but sometimes lose sight of it. Take care, Neville 🙂🙃🙂🍀🌹🍀

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries50182 ай бұрын

    Very true Neville. Always appreciate every moment whether it’s good or bad but take the bad as a life learning lesson. Thank you 😀☀️🦓

  • @Neville-N
    @Neville-N2 ай бұрын

    ​@@dinkyktsedsdiaries5018Thank you Katie 😊😊

  • @Neville-N
    @Neville-N2 ай бұрын

    Hi Katie, support is everything like you say. You have the very best ❤ Take care, Neville 🙂 🙃 🙂🍀🌹🍀

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries50182 ай бұрын

    Hi Neville, it really is so important. Thank you, I’m very lucky. Hope you enjoyed your trip away. 😀🏴󠁧󠁢󠁳󠁣󠁴󠁿♥️

  • @Neville-N
    @Neville-N2 ай бұрын

    We did Katie whilst the sun shined 😊 Thanks

  • @andymcpandy2128
    @andymcpandy21282 ай бұрын

    Hey random internet person. 😊

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries50182 ай бұрын

    Hello to you too 😀👍🏼

  • @johneccles3026
    @johneccles30262 ай бұрын

    Aww hugs Katie xx

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries50182 ай бұрын

    Thank you John xx

  • @johneccles3026
    @johneccles30262 ай бұрын

    Aww

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries50182 ай бұрын

    🥰

  • @johneccles3026
    @johneccles30262 ай бұрын

    Wow 40? I thought you were same age as me x

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries50182 ай бұрын

    Ha I’ll be 39 this Friday so still got a year to go before I turn 40 xx

  • @johneccles3026
    @johneccles30262 ай бұрын

    Great song. Walney looks beautiful on a sunny day

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries50182 ай бұрын

    We’re so lucky to live where we do John ☀️😍

  • @Neville-N
    @Neville-N2 ай бұрын

    It must be very frustrating Katie. It can only improve when people like yourself are raising awareness and raising funds for EDS charities to put forward initiatives to the health authorities. Well done for being part of the effort to improve the care to EDS sufferers. Take care and well done for your wonderful effort with the Dazzle Walk. 🙂🙃🙂🍀🌹🦓

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries50182 ай бұрын

    Thank you, I'm trying. Id like to do more and somehow get involved with training of medical professionals (at least) to raise awareness and understanding of EDS, and how it affects people. :-D

  • @Neville-N
    @Neville-N2 ай бұрын

    Well done Katie with your challenge ❤ I hope the Dazzle Walk goes well! The sun is shining! But take care and only do what you can. 5 miles sounds mighty ambitious and I know you will give it your all. Best wishes, Neville 🙂🙃🙂🍀🌹🍀

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries50182 ай бұрын

    Thanks so much! 😊 It went really well, thank you. Everyone that joined us along the way enjoyed themselves which is a bonus. It took us one hour fifty minutes to do the 5 miles but that was with a few little breathers as we met with others.

  • @tiaroberts7056
    @tiaroberts70562 ай бұрын

    Well done girl keep going ❤❤❤

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries50182 ай бұрын

    Aww thank you Tia 🥰♥️

  • @darren7469
    @darren74692 ай бұрын

    It's no wonder your light is here to share with so many who will take the time to honor the example in peace which you so beautifly exemplify - thank you!

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries50182 ай бұрын

    Aww thank you, that’s really very kind of you to say. ☺️

  • @Neville-N
    @Neville-N2 ай бұрын

    Hi Katie, greetings from Scotland. We're just having a short break. Love the selfie! You look lovely as you always do. You are very photogenic and a natural infront of the camera ❤ Never ever felt at ease myself 😂 😂 Usually hide if I see one 😂 Saturday is fast approaching and I'll be thinking of you on your 'Dazzle' walk. Please weather, stay dry 🤞 Sending my best wishes, take care, Neville 🙂🙃🙂🍀🌹🍀

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries50182 ай бұрын

    Hello, and I hope you’re having a great time in Scotland and I hope the weather is good there for you all. Aww thank you, very kind of you to say. ☺️ it took me a long time to get used to being in front of the camera tbh but I always get nervous when other people are taking pictures of me. You’re like my Dad, he hates being in front of it too. Thank you, let’s hope the weather is good for Saturday 🤞🏼 take care. 😀🦓🚶🏻‍♀️👩🏻‍🦽♥️

  • @blackwing97
    @blackwing972 ай бұрын

    very true

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries50182 ай бұрын

    ♥️

  • @Neville-N
    @Neville-N2 ай бұрын

    Well done Katie for catching up on your challenge. I have been watching and learning. Thank you for just being you 😊 Your the best 🥰 Sending best wishes, Neville 🙂🙃🙂🍀🌹🍀

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries50182 ай бұрын

    It’s not been easy catching but at least I’m trying, huh?!! 😉 thank you. Aww that’s really nice of you to say. Thank you Neville for always being so kind. 😀☀️🦓♥️

  • @leloulan
    @leloulan2 ай бұрын

    Such a cool idea to use lipstick as your red for vEDS xx

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries50182 ай бұрын

    Thank you, it was a last minute resort. I didn’t have a reds 4 VEDS T-shirt and thought the red lipstick would stand out just as much. 💄💋 xx

  • @jimbrody3009
    @jimbrody30092 ай бұрын

    Might sound silly but have you tried nature? I suffered with depression and anxiety and the only thing that got me feeling normal was going back to nature, being in the green surrounded by trees, wildlife, natural music, beauty beyond belief.

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries50182 ай бұрын

    It doesn’t sound silly so thank you for thinking about it. I’m lucky that I live near the beach and some stunning places nearby which are nice to visit. Thank you.

  • @ACDuke2489
    @ACDuke24892 ай бұрын

    Thank you for sharing your story, wishing you health and happiness in the future. ❤

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries50182 ай бұрын

    Thank you so much. ♥️♥️

  • @Neville-N
    @Neville-N2 ай бұрын

    You should be so proud of yourself Katie. You have to 'climb mountains' to achieve your goals and your right to remind everyone. ❤ I do hope your efforts to see Blue recently were rewarded. 😊 I know it will have taken alot out of you so take care and slowly build back up again 😊 I love the new top 💙 All my best, Neville 🦓🌹🦓

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries50182 ай бұрын

    Aw thank you 🤗 it was definitely worth the pain and exhaustion seeing them again 🥰 I will try my best, thank you ♥️

  • @Neville-N
    @Neville-N2 ай бұрын

    @@dinkyktsedsdiaries5018 So pleased to hear Katie 💙🌹💙

  • @leloulan
    @leloulan2 ай бұрын

    Wow she's 15?! What a loyal companion 😍 xx

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries50182 ай бұрын

    I know, I can’t believe she’s 15 either. Definitely been through a lot with her and I’d be lost without her. 😻 xx

  • @leloulan
    @leloulan2 ай бұрын

    It's definitely a lottery when it comes to who you end up dealing with and whether or not you get the help you need xx

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries50182 ай бұрын

    That’s very true, some are great and some are not so great… xx

  • @leloulan
    @leloulan2 ай бұрын

    Gosh such powerful words. This was really well put together xx

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries50182 ай бұрын

    Thank you lovely ♥️ xx

  • @Neville-N
    @Neville-N2 ай бұрын

    Hi Katie, i've been watching your videos over the last few days with interest. Marvelled at your ability to put your struggles into poetry. It was very moving ❤ So grateful to your Rheumatology Doctor for being so kind to you ❤ And reassured that you have Pixie to turn to in times of need ❤ "Once a fighter always a fighter" Take care, Neville 🙂🙃🙂🍀🌹🍀

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries50182 ай бұрын

    Hi Neville, aww thank you. People have always said that I’m good at writing and it’s something I enjoy doing… expressing myself through words. ☺️ my Rheumy doctor is fantastic when I do see and speak to her although it’s been other ones who have spoken to me recently instead of her and I’m hoping it’ll be her again next time. Pixie is my feisty little fur baby always there for me 😻 you take care too 🥰🦓🤗♥️ ps thank you so much for the sponsorship on my dazzle walk 👩🏻‍🦽♥️

  • @Neville-N
    @Neville-N2 ай бұрын

    @@dinkyktsedsdiaries5018 Your welcome Katie. 😊🌹😊

  • @leloulan
    @leloulan2 ай бұрын

    I can relate to this so much 😥 xx

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries50182 ай бұрын

    I’m sorry that you can relate to this too, feel free to message me on my page whenever and I’ll reply back asap xxx

  • @Neville-N
    @Neville-N2 ай бұрын

    Hi Katie, a great achievement for you. We'll done you and the College 👍It must have boosted your confidence no end. Loved the photos 👍🦓🌹🦓

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries50182 ай бұрын

    I feel very proud of what I achieved. Especially when I got accepted into two different universities- one for journalism degree, and the other for combined honours degree in criminology, psychology and sociology. Thank you, 🥰🥰🏆🦓👩🏻‍🦽

  • @Neville-N
    @Neville-N2 ай бұрын

    Hi Katie, yes I recall you saying that there was a Hydrotherapy Pool at your local hospital and that was lost! I did read there was something similar at Kendal but that is much further to travel. A great shame! Take care and well done with your challenge 👏 Neville 🙂🍀🙂🦓🌹🦓

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries50182 ай бұрын

    Hello Neville, yeah it’s a great little pool and it was always very hot. I was referred to the pool at Kendal but they couldn’t meet my needs so had to turn it down. For once a month, it would have been worth the trip 😀 could have a made a day out of it 😆 thank you. Got a Dazzle Walk this month which I can’t wait to do. Take care. 👩🏻‍🦽🦓😀♥️

  • @Neville-N
    @Neville-N2 ай бұрын

    @@dinkyktsedsdiaries5018 Oh that was unfortunate regarding the pool but do keep trying incase they could meet your needs at some point in the future. Hope the Dazzle Walk works out well for you Katie, weather etc behaves itself 🤞 Are you being sponsored for it? Count me in if you are! Best regards, Neville 🦓🌹🦓

  • @leloulan
    @leloulan2 ай бұрын

    Being online has really helped me too xx

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries50182 ай бұрын

    ♥️ xxx

  • @leloulan
    @leloulan2 ай бұрын

    Couldn't live without my heatpad! An essential piece of kit xxx

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries50182 ай бұрын

    Mine is one of those that goes under your bed sheet. Can’t live without it! But struggle more when I’m away from home without it. Glad you have a heat pad that helps you xxx

  • @habilistalk
    @habilistalk3 ай бұрын

    ขอให้คุณหายดี

  • @wrenchman1982
    @wrenchman19823 ай бұрын

    ❤❤❤❤

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries50183 ай бұрын

    ♥️♥️♥️

  • @leloulan
    @leloulan3 ай бұрын

    You are definitely Zebra Strong personified. I'm glad to be part of your community xx

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries50183 ай бұрын

    Aww you are so kind Lou, thank you. I’m thankful for you xx

  • @Neville-N
    @Neville-N3 ай бұрын

    Stay strong Katie 🦓❤🦓 Those are excellent portraits by the way ❤ Take care, Neville 🦓🌹🦓

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries50183 ай бұрын

    Thank you Neville, it makes me happy that you liked what you saw of my portraits. 🥰 🦓👩🏻‍🦽🐈♥️

  • @Neville-N
    @Neville-N3 ай бұрын

    Bless you Katie 🙂🙃🙂🌹🍀🌹

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries50183 ай бұрын

    🤗🦓♥️

  • @leloulan
    @leloulan3 ай бұрын

    I was diagnosed with hEDS but we think it might actually be aEDS xx

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries50183 ай бұрын

    Are you going to see them again to discuss about your suspicions? Trust your gut instinct. xx ♥️

  • @leloulan
    @leloulan3 ай бұрын

    They don't do genetic testing down here on the NHS and I can't afford to go private atm. We'll see in the future xx

  • @user-vx8ed7qn2b
    @user-vx8ed7qn2b3 ай бұрын

    Thanks for the information. Stay blessed!

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries50183 ай бұрын

    You’re welcome. Thank you and the same to you too! ♥️

  • @leloulan
    @leloulan3 ай бұрын

    Your merch is so cool! I love seeing it showcased in your videos 🦓🌈 xx

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries50183 ай бұрын

    Aww thank you Lou 🦓🤗🥰♥️ xx

  • @hachanalisarker
    @hachanalisarker3 ай бұрын

    Helen sounds like a wonderful occupational therapist, and it's inspiring to witness your commitment to your recovery.🏥💪

  • @Neville-N
    @Neville-N3 ай бұрын

    Dear Katie, I can understand your anxiety before the appt. If you have a splint for your left hand would that do away with the need for the bandaging that you currently have? 🤔 Judging by your appraisal of the other splint which you find comfortable, it bodes well for this one to! What the therapist suggested sound like an excellent idea 💡 I'm hoping it goes well for you. Take care, Neville 🤞🍀🌹

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries50183 ай бұрын

    Hello Neville, yeah all of the trauma I’ve been through with this hand definitely made me feel anxious. I’m still a little sceptical about whether the splint will be completely comfortable and supportive. Although I’m remaining as positive as I can, at least she’s willing to try and not give up like they did at WH. I’m really liking the splint on my right hand and the Coban tape. Thank you. 🤞🏼🤗♥️

  • @Neville-N
    @Neville-N3 ай бұрын

    @@dinkyktsedsdiaries5018 Yes that was unforgivable how they treated you at Wrightington! Crossing everything for you this time 🤞🤞🍀🍀

  • @leloulan
    @leloulan3 ай бұрын

    Busy, challenging but EXCITING oh yes xx

  • @dinkyktsedsdiaries5018
    @dinkyktsedsdiaries50183 ай бұрын

    Thank you. Yes, oh definitely!! xx