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Reposting a Post From My Former Blog
Katie Wearing • Nov 14, 2021
In my next post, I will be sharing a new up to date post, now it’s 14 years since the surgery!!
10 Yr Anniversary // Wrist Fusion
Hi peeps,
So it’s been ten years since I had my wrist fused and the journey has certainly not been easy or pretty from the word go!! I’m going to share with you the story of what I have been through from before the surgery and the time since. I can’t remember certain things but I can remember most of it all.
Growing up; I was used to getting injuries, different pains, and various dislocations so at first, I just thought it was another thing like usual when I started getting pain in my left hand. It caused a bit of pain when I moved my little finger but it wasn’t dislocated or broken. I preservered with it for a bit before I decided to get it checked out. Some time later; I was referred to a local orthopaedic surgeon who I had seen many times over the years so he knew me. As usual, he had X-rays done and said ‘I’m referring you to Wrightington Hospital. I don’t want to perform surgery on you with you having EDS, but they’re more specialist than I am.’ So I agreed.
This was about seven months before I had the surgery. The pink splint is what they had made for me. Apart from my little finger, I had reasonable use and movement in the hand/fingers.
Anyway I received my letter from the surgeon at WH and it was the same person who I had previously seen about my knees and elbows. He actually told me that he wouldn’t operate on me as he wouldn’t know whether it would make things better or not so he had special splints made for me by their hand therapy team instead of the surgical route. I liked him and I was much younger so I think that made a difference in how he was with me. I have since learned that he is now a professor.
It was the day when my appointment came and we (me and my parents) travelled down to WH to attend it. There we met with the consultant and after looking at both my hand and X-rays, he said he wanted to operate on it. There he told me that although the wrist would be fused, the rest of my hand I would be able to move and use it. Anyway he booked for it to happen. I wasn’t too certain and I felt confused tbh. Had he forgotten what he told me in a previous appointment? It felt like he had. While we were there, they had me fitted for a special splint to wear. I wore this for a while.?
A few months later, we traveled back to the hospital on the Tuesday; ready for the surgery the following morning. I didn’t sleep too well as I was too busy worrying and I felt really scared. So the next morning, the nurses prepared me ready for the surgery. The doctor came and chatted to me. It was a different one, a younger one. He was nice and polite. He talked to me in thinking that he didn’t think my hand would take the fusion so he would just open it up and see what’s what. My hands and wrists are very small, my bone density is low and I have low muscle tone which is why he said about how he didn’t think it would work properly on me. Afterwards the anaesthetic lady came to see me and was surprised that she hasn’t seen me before in the pre-op assessment clinic. The clinic had said that I didn’t need to go through for one even though we were a bit ‘erm okay, if you’re sure...’ so I only had the very basic checks at my gp surgery. The lady really looked at me thoroughly, focusing on my heart and spine. (If you are new to me and my blog, I have a severe form of kyphoscoliosis and had a heart murmur when I was born. I also have asthma). She flatly refused to let the operation go ahead until she knows I have the required tests plus more first. I understood even though I felt annoyed and let down. For weeks I had been building myself up for this surgery and dealing with anxiety issues. I had been planning my time off from college as well. My parents and I weren’t happy that we have gone this far for them to not have fully prepared beforehand. This was definitely not up to the level of care and duty with careful planning like we had been used to at both FGH and RMCH.
We traveled back a few weeks later for the pre-op assessment and the same anaesthetic lady did all her tests on me. She said she wanted to take as many precautions as possible and wasn’t happy at what had happened. The surgery was looming and it was feeling more real than it even did before. I spent the next few weeks worrying, not sleeping and being anxious in case something bad happened. I had gone back to college and again they prepared for the time I would be absent. They spent many times trying to reassure me that I would be okay as they had seen how it was affecting me with the worry.
Again like previously; we traveled through on the Tuesday evening. We had met with another anaesthetist lady and she went through the form. I asked her if it would be okay if both my parents were okay to come into the anaesthetic room as I was too nervous to which she replied ‘yes that’ll be okay’. Pretty much like the time before, I spent the night tossing and turning in bed; feeling more anxious.
They got me up and prepped, again the same routine happened, except it wasn’t the consultant again and it was another doctor, so that didn’t sit well. They told us my consultant had Delhi belly which I thought ‘well where was he last time as well and surely as my case is a little more complicated, that he should be there?!’ They said they would put a lower limb block on me to which I didn’t know what he meant so I just said okay to him. The time came when it was my turn to go to theatre... they suddenly refused my dad to come with us so I wasn’t comfortable and I had this terrible feeling in my gut that this wasn’t a good idea. The lady tried to get my hand to put the needle in but I kept moving it away and saying no but my weak muscles proved too easy for her.
So the time was now about 1pm and I had been in theatre since about 9:30am. Apparently it has took much longer than expected. As soon as I got back to the ward; the amount of pain I was in was unreal. I had never felt anything like it. I couldn’t see my hand as it was in a lot of dressings and they placed my arm in an hanging sling thing. The pain was too unbearable so my parents had to get the nurse to give me some pain relief. They kept trying to force a Tramadol tablet down my throat which they were getting frustrated at; even though it said in my notes that I am unable to swallow tablets. Anyway after my parents reminding them this; they get me some liquid pain relief after having to go to other wards to get it. No matter how many times they kept trying to make me comfortable, there was just no way to find a position for me that I could cope with. It makes it very hard when you can’t sit straight or properly because of the curved spine.
Eventually my parents had to leave and go to the house place that was next to the hospital for relatives to stay. It was quite late. The ward was quite lively considering it was a hospital ward, some of the fellow patients and nurses were all stood outside the fire door having a smoke which half amused me but half made me think ‘hmm that’s very professional, not lol!’ I didn’t sleep much to say the least. Constantly having pain relief through the night to get me through.
The next morning, a therapist came to access me hand and was quite shocked. She got the nurses to come and have a look at it. They nicknamed my fingers ‘chipolate sausages’ so it was good I couldn’t see it properly. The therapist tried to move my fingers but there was no chance. The swelling was just too much and they weren’t a good colour either. She said that we couldn’t do any of the exercises as the swelling was too much and the fingers just could not move. Normally after a wrist fusion, you have to do special exercises to get them working again but this was not possible. Not long after, the doctor who did the surgery made his appearance and checked it over. He was surprised to see how bad it looked. It was the worst he had seen. He told me that my bones were a mess. I asked him if he knew what the chances of my other hand going like it and said it was a possibility which I thought 😕 wish I had never asked to be honest! He also said that the limb block can’t have worked on me. I wasn’t happy; they said to me that it would be completely numb. There wasn’t much else said from him and he made his exit. The therapist came back to put more dressings on it.
I couldn’t wait for my parents to come back as I felt the worst I had ever felt. I cried when they came and they did their best to console me. My appetite had gone, I felt too queasy and yucky. That’s how you know I was in so much pain when it makes your tummy churn! The next few days were a little hazy as it consisted of pain, lack of sleep and lack of food.
It was Friday now and they were debating on whether to send me home or not as I wasn’t good. The anaesthetic lady had been concerned over the lack of eating and I remember telling her that normally after surgery, I’m starving so it was very unusual. The nurses didn’t think I was ready to leave yet either with the state of my hand. Although I had already stayed longer than other patients; they thought I’d be out later on the day after my surgery which seemed a bit quick for me with having EDS. The ward closed on a weekend so they reluctantly decided to let me go home rather than move wards where they don’t really deal with upper limbs. Despite the few hiccups, the nurses were nice and the ward was very clean. So after they discharged me, we headed home. It felt like the longest journey I had experienced and I’m a person who is used to travelling to Manchester and back!
The next few weeks or so; it consisted of the same as it was on the ward expect my appetite had started coming back. My hand and fingers were still very swollen; the pain was still very intense. My days spent mostly of me either in bed or on the sofa with my arm propped up. I had back ache too.
It was time for a follow up appointment at WH. The journey wasn’t great as you can imagine. They sent me for an X-ray first so we went to get this done. Then the nurse called me to change the dressing. I just remember my dad was in the room with me, not sure whether my mum had gone to the toilet. The nurse took the dressings off and proceeded to take the stitches out. This was extremely difficult and they did not want to come out. After many a time in A&E and previous surgery, I did know that it takes me longer to heal and that stitches have gone left in, and that they come out with no force when they’re ready to come out. She started pulling and as it was getting too much, I started getting upset. My dad moved to sit next to me and held my other hand. I’m surprised I didn’t break his hand with the amount of pain I was in. I asked her to stop for a moment as because I was crying so much; I was struggling to breathe properly and I needed to get my breath back to normal but she ignored me. She kept pulling and yanking at them. By this point, I was screaming in agony. Even my dad tried saying to her ‘can you just pause for a minute’ but again she ignored. I don’t know if she didn’t read my notes as it would have said that I have EDS or she was too busy doing as she was told with no regard to my wellbeing or condition. I seem to remember that she had to leave it open so that the doctor can see how it’s looking. We waited back in the waiting room while the doctor became free for us. My mum had come back at this point and seen I’d been upset. I was nervous about going in to see the doctor as I just wanted my hand left alone now. Anyway we were finally called in, and it was actually the main consultant who was there. A part of me was hoping it’d be the one who actually did the surgery seeing as he saw the state of my hand and fingers. He looked at it and tried to move my fingers to no avail. It was causing me further pain. Anyway he got looking at my file or on the computer (memory a bit hazy as the next bit shook me!) I calmly said to my dad ‘I wish I had never had the operation. I’ve had no sleep, constantly in pain, it being so swollen and that I can’t move it still and I was feeling really low’ the next minute, he turns round and says ‘well we did the best you know!’ In such a harsh, and brutal manner, that me and my dad looked at one another; shocked. For my dad to look the way he did, says it all, and my dad is very laid back but it surprised him with how I was spoken to. He showed no compassion or understanding of what I have been through, whatsoever. Again, I got upset after we left that room. In all of my years and time spent in and out of hospitals, have I ever been treat in such a cruel manner by a doctor! Shortly after, in the hand therapy department; they fitted a cast on it. Once they were finished with the casting, we went to get a drink in the restaurant before leaving to travel back home. The sooner the better in my opinion.
My fingers and hand was still swollen weeks later and having my mum talk to the gp, who came to see me, they arranged for the district nurses to come out to me. They were worried about it and were a little annoyed at how WH didn’t seem to do anything to help us. The nurses had some special finger socks made out of elasticated fabric (the same that they use for compression) to put on them everyday to see if they could help the swelling. Nothing else was working; I constantly had my arm elevated up on cushions and had anti inflammatory medicine (to what my tummy could handle). It was agony putting them on but I persevered. I was desperate. There wasn’t a day that went by where I didn’t end up in tears due to pain and lack of sleep. My family rallied round me around the clock and they supported me. The only time that I left the house was to go to the gp surgery or WH, it was a lonely time for me. If Facebook or twitter had been around during this time, it might have made me feel less lonely and give me some sort of social interaction as I wasn’t getting any which was hard to get used to as I went to college most days.
Again another follow up appointment at WH. To be honest I don’t really remember this was so much, just that the hand therapist definitely reiterated that there was nothing they could do for my hand as they said ‘I’ve lost the use of my tendons and it was far too late to do anything. They were surprised that my fingers were still swollen a little bit (think this was in December). The consultant wasn’t there as it was one of the registrars.
My lovely friend who was also one of my main learning support ladies came to visit. It was so nice to see her as I was missing college and just seeing someone other than family. She brought me a bit of college work to look through which a lot went over my head. There was some bits from my other LS lady too, I missed her too. Whenever I felt up to it, I just read through the notes and tried to do bits of what I understood.
Christmas came. Some of it was a blur to me to be honest, although I did venture out for the first time since 31st October to my annual family Christmas party and NYE. It made me feel anxious being out and surrounded by lots of people. I tried my best to enjoy myself but I just didn’t feel right in myself.
This was taken over the Christmas/NYE period, about two months after the surgery. I always smile through the pain, I was trying so hard to not let the pain stop me. This was the cast they placed on me at WH. You can also see that my fingers had already bent under because of the tendons.
By now my fingers had finally looking more like my fingers with the swelling going down but they were still extremely tender. It was January and I was preparing for starting back at college. I remember being excited at seeing everyone again but for some reason, I felt really apprehensive. We waited until after the January exams had finished so it was the end of the month by the time I started back. The staff did their best to help me settle back into college life and I thank their patience. I struggled. They set me up to see the college counsellor and every week we met up to chat about things. My self esteem wasn’t what it was and I felt so down.
My gp was worried about me so she got me to fill out a questionnaire thing because I had told her how everything was making me feel, the pain I was still in and the disappointment I felt, I was crying so much that I didn’t always know why, anyway; she diagnosed me with depression and set about to help me. She understood what had happened with the whole surgery situation and the effect it was having on me.
Some time later, me and my dad travelled back to WH to see the senior hand therapist lady who was in charge about looking into what can be done with my hand. She specifically arranged with the consultant’s secretary for me to see him in clinic as I had only seen him once when we had that upsetting appointment. Every time we had gone, it was always one of his registers (or whatever you call them) and they never had any answers. They pretty much dismissed it. While she was talking on the phone to his secretary, I noticed on one of the shelves a big folder with Ehlers-Danlos Syndrome and I quietly felt suspicious (probably the best way to explain my thoughts) I asked her if they dealt with other EDS patients and she sternly said ‘yes’. I thought well maybe if you had, then the way I’ve been treat might have been a bit more empathic and understanding. They might have been a bit more aware of what’s happened to me happening in the first place. She looked at my hand while we were there and told me that my knuckles had dislocated which will have been because of the tendons losing their range of motion and the extreme swelling. She reassured us that it will be the consultant we’ll be seeing as she’s put special measures in making sure he will be there.
It was the day for us to travel to see the consultant. I jokingly said to my dad ‘what’s the bet that he isn’t there but surely he will be as it’s been made specifically for us to see him?!’ We waited in the clinic for our turn to be called in. Eventually we got called in and shown to one of the little rooms to wait for him to come in. Anyway, a nurse and a doctor came in, he introduced himself (can’t remember his name as we’ve seen so many there) and I said ‘where’s ...?’ The nurse said oh he’s had to rush off to leave the hospital. I quietly growled to myself, thinking ‘wow what another wasted journey!’ The doctor examined my hand and said ‘best to come back again’. We weren’t in the room long and we headed to the restaurant for some dinner. Guess who was in the queue in front of us by a few people in between... yep you guessed it. Me and my dad exchanged looks... I could feel myself getting upset and annoyed. I thought what a load of rubbish that nurse said, it can’t have been that urgent when he was happily getting his hot dinner. I suddenly decided that I will try and get his attention whilst waiting in the queue but he ignored me. He obviously went to his office to have his dinner. It would have only took not even ten minutes for him to have seen us especially when we had arranged specifically to see him and traveling all this way.
A few days later we had spoken to the lady from WH about what happened at the appointment so she’s managed to reschedule another date for us.
So we made our final visit to WH as I needed to see what they could do about my hand once and for all, we were expecting to see the consultant for sure this time. Again we were called into a little room and waited. Typical. The consultant wasn’t there. Instead was a pleasant registrar, he examined me like they do. He read my notes and the state of my hand, and looked at me saying ‘I’m not quite sure what we could do, apart from cutting it open. I understand that you’ve been through a lot and that you may not want to do anything surgically, with what you have already been through.’ I nodded in agreement, I didn’t want or trust anyone to operate on it again especially if it won’t make it any better. I couldn't emotionally handle doing through it all again. He shook my hand and he left. He was actually the first and only doctor to acknowledge the distress and ordeal that I’ve endured. To me though, it was too late and I wish the consultant could show the same compassion and awareness that he did because it was unprofessional and uncalled for.
There are lots of questions that I have that will continue to plague my mind that will probably never be answered. The lack of compassion and empathy will remain with me and effect me especially as I face future health issues because I have never experienced the ordeal that I have at this hospital, anywhere else. I wish I knew more about what could happen from trauma and surgery where Ehlers-Danlos Syndrome and my associated conditions are involved. I know more now than I did back then, but I wish they would have made sure they were aware of all repercussions from this intricate and intrusive surgery and not go back on what they had previously said in appointments before this happened. I would like the consultants (and nurses) at WH to show more compassion, empathy and awareness with every patient, I do feel like because they have so many patients that do become immune to each individuals’ needs, whether that’s physically or emotionally. I hope that by me sharing my story can raise awareness and encourage other patients to be strong in advocating their needs and worries. Don’t be afraid to ask questions and challenge if you need to... this is something I take very seriously now. I strongly advice you to listen to your gut instinct too. I hope that none of you will experience what I have been through because it will affect you for the rest of your life like it has for me. Even to this day; ten years on, I struggle with pain and I have to adapt how I do things which isn’t easy when you have EDS, Osteoporosis and Osteoarthritis (in my right shoulder blade) to endure. It gets frustrated where I can’t even lift my hand because the effect of surgery. As someone who likes to have her nails done all nice and pretty, it is definitely a challenge trying to do my left hand. This is just an example of the frustration and distress that I’m talking about.
This is me and my not so beloved hand, today, ten years on.
I am sorry that this is such a long post but everything I have written is my experience and the truth from how I saw and how I have felt. Thank you so much for reading this. I would love to hear your stories especially if you have been to WH. Am I alone or have you had a bad experience with there too? Please take care, enjoy Halloween and hope to see you in my next blog post. 😘❤️xxx
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)
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
Hi everyone! So I just wanted to have a little ramble with whoever reads this blog (and a huge thank you to those that do read what I write!) it's rather late in the night/early in the morning as I'm writing this. My breathing issues have caused me to have some okay days and not so good days. On the not so good days, it really does make things difficult for me. It causes me to feel really breathless, really exhausted, incites the pain and leaves me to have headaches that feel like I'm being suffocated. When it gets bad like this, it makes me unable to do much and causes my anxiety to rise more. However, I'm doing what I can by taking my Ventolin more often, have my pain relief and basically just rest up in bed. I have been having my usual back and chest pain, more so in my back in the last few days and it feels like someone is sitting on the curved part. My dodgy hip has been playing up too which has made things even more fun for me! My body really is greedy! Now I'm going to be more positive now, because I'm sure you'll be fed up of reading about my health issues just like I am for enduring them on a chronic basis. Just a few days ago, I finished writing my stories which I'm going to do my hardest to get published. It has been one of my lifelong dreams/ambitions to have my own books and to see my own words printed. I started off by writing one story but typically me being me, I began visioning things from the male's perspective and I just knew that I had to write about the main male character in his own book. The two books are intertwined so you get the two main characters' perspectives. It has been so much fun to write about their story. Both characters are from different worlds as in she's a disabled woman who's living her life like she is and he is a top league footballer. They meet. A friendship forms between the pair and you can follow their journey. I'm already thinking about writing sequels and I really do care about the characters. At the moment, I'm proof-reading both books and editing them wherever they need it. I'm also trying to come up with the names of the books (if you have any suggestions, please let me know!) and also chapter titles as some are currently untitled. My wonderful friend has been helping with designing the front cover which has been amusing! I'm so thankful for her help though. Today my sister and my niece, Ciara (who's six years old) came to visit us. I was excited to see them both and it cheered me up. Then I watched Barrow AFC on iFollow. I thought they played well especially more so in the first half. I am remaining hopeful that we will start to see some positive outcomes in the last so many games. I can't wait for the next home game and seeing all the familiar faces as well. I didn't get to watch the England game as I don't have Sky sports but they won. I really love the squad. It also gives me the chance to see/hear about the player that I like without feeling like a traitor to my own club (I don't mean Barrow, I mean the premiership) h ha! I must admit, I really don't like seeing negativity or vile comments to players, because it isn't nice and I always believe that we should be kind to each other. We all have feelings, no matter who we are. Tomorrow/today, I'm supposed to be going to the local Manjushry centre for a little drive out and to enjoy the sunny weather. I do love going to this place, I might vlog bits of my time there but I don't know yet. That reminds me, I need to have a look at what I want to wear and I'll have a browse before I go to sleep. I hope everyone has a nice day and take care of yourself. Please stay safe and have fun! See ya in my next post, DinkyKt xx