Today is December 3rd, which is International Day of Persons with Disabilities. A day I have always found important but more so since family members have been diagnosed with disabilities, I myself have and becoming an adult. It has become more important now because I have had first hand visibility to the lack of inclusivity out there for those with disabilities! It’s slowly getting better, but there is so much more that can be done…
This years theme is;
This focus allows employment, both accessing and remaining in, to be improved whether with technology and/or innovative solutions supporting with employers increasing their hiring for those with disabilities. It also will help to support those with disabilities in obtaining/remaining in employment by paving a way for new ideas to be really investigating the current support “options” improving them and removing insufficient ones. All in all this is providing a stepping stone in the pathway of the right direction to massive inclusivity for disabled persons.
For more information about this theme and events around it head to https://idpwd.org!
Whilst discussing inclusivity related to disability i’d like to share a little reminder of ways we can be more inclusive on a daily basis, especially with social media. So i’ve put together a little list below to start your inclusivity of persons with disabilities journey! These are all ones I try to be mindful of and include in my personal and work life too;
Thank you as always for reading! Remember that this post is written with love and the intention of raising awareness and resources. Please add any resources you may have in the comments below xo
Instagram, Facebook, Tiktok… A few social medias of many. Which ever one(s) you use you will know its absolutely brutal out there.
I’m quite lucky that the community I’ve been part of a Instagram has been one of those who live by a gluten-free diet or have disabilities or are friends and family. I’ve seen the abuse that influencers, those with a few thousand followers and celebrities receive. I’ve also experienced firsthand bullying throughout my school life and as a young adult. Never did I think that my safe community on Instagram would be tested!
At the beginning of December 2021 I created a reel, following the trend that shows you with your best friend when you first met and what you look like now. Over a period of 2 weeks I received numerous comments about my appearance, my weight and a few comments have been made about my friend. I started off trying to educate those that your opinion might not be wanted by the recipient etc. But im human, theres only so much before you get sassy back through a protective defense. It’s been hard, really hard.
I ended up disabling the comments on the reel, which even resulted in receiving a dm telling me to turn my comments back on and that I was a coward. After this I took some time away from TheUnluckyCoeliac, an instagram page i’ve put a lot of work into. Building my presence in the community, advertising my blogs of the years and even sharing insights into my life. It felt heartbreaking to step away!
I’m so glad I did, it was only a short time away but the feeling I felt when I came back was incredible! TheUnluckyCoeliac is my brand, it is my hard work and dedication, its me putting back into a number of communities that have helped me along the way. I am proud of what I’ve accomplished and I will not be drove away from that again. It gave me a boost of resilience that I wasn’t aware I was lacking. And for that, I will remain an advocate for anti-bullying, disability, new mothers and so much more!
One thing I think everyone needs to remember on social media is; you only see what someone wants you to see, all the hard times are hidden. Therefore be kind. Before posting it ask yourself these questions;
If it was you on receipt of what youve typed, how would you feel?
If it was your child, niece or nephew receiving comments like yours would you be happy?
Is that the character you want to be known for?
Is there something that you need help with, which is the reason behind this action?
To those who wrote those nasty comments on my Reel; I hope that whatever it is you’re going through, someone is there for you. I hope you never have to endure the feeling that you made me feel. I forgive you, and hope you can forgive yourself. And finally, please reach out for help if you haven’t. Don’t be afraid to!
Its no surprise that I, along with many others, feel completely mugged off by the government in light of the recent news. If you haven’t see it, a long story short is numerous parties were held and attended by our government when the rest of us were locked down…
I am full of so many emotions and didn’t quite know what to do with it all! After seeing numerous posts on instagram by influencers, speakers in the house of commons and your average joe, I have decided to write down why I’m angry in hopes of a sense of release and that someone else out that doesn’t feel crazy for being so angry too.
March 2020 we went into lockdown, I was 5 months pregnant with our first child. Our parents first grandchild. For a long time I was worried pregnancy wouldn’t be something I could do, as I didn’t think my body would handle it. I was so convinced I even brought it up in a pain management psychologist appointment, months into the start of my relationship with my now husband. I was scared that if things got serious and I couldn’t ever be pregnant he’d need to know before it was too late. So its safe to say this pregnancy was incredibly special and important to not just my husband and our parents, brothers etc. But it was incredibly special for me to be doing something I’d feared I wouldn’t be able to do.
Lockdown meant no visitors, pregnant people were considered vulnerable at the time so I couldn’t even go to the shops. Food shopping was done in turns by our parents and dropped off at our front door. Facetime was the only way to communicate with anyone other than each other, and I was working from home like the rest of the country. I found it really difficult to not be sharing key parts of pregnancy with our family and friends.
I have anxiety, pre-pregnancy is was heavily situation based; eating somewhere I hadnt before, meeting new people, travelling somewhere I hadnt been before and flying were my triggers. Pregnancy increased it massively and I continually felt anxious and being in a global pandemic where you’ve been told your vulnerable made it even worse! I was not in a great place at all, but I continued to work, told my colleagues (we are quite a small team which is really nice) that I was struggling and we all supported each other. Ted was great with it all, our parents were understanding and I have my friends being incredible too. My maternity cover had also just joined the team around April time, so I was able to focus solely on her and we began the handover process.
April we received the news that Ted’s nan had covid. There was a wide panic and stress and worry spread through our families. She was in hospital, but restrictions meant no one could visit. No one did. She came home and still no one visited. Front door drop offs of food shopping and birthday gifts were made. We had a family quiz night over FaceTime and then the next day we received the heartbreaking news that she’d gone. Theres nothing more gut wrenching then waking your partner up to tell them that their Nan is no longer with us. I rung my head of department, told her what had happened and turned off my laptop. I rung my Mom and burst into tears. That day I left the house, my parents had done tests and came to get us. We went and sat in the garden of Ted’s grandparents to be together as safely as we could. Still keeping guidelines in our minds despite wanting to cuddle and comfort each other.
In May, at 7 months pregnant I stood (and sat as there was one bench that was taken in turns to sit on by many of us) outside the funeral with my father in law, whilst we supported our family at a distance still sticking to the rules. He couldn’t be with his wife, neither could the other husbands of Ted’s aunties, and I couldn’t be with Ted as they said goodbye to their mother/grandmother. No wake could be had, because we stuck to the rules.
July, I went into labour. Excluding our fathers going to work as their jobs meant they still worked (but were testing constantly and being extremely careful) our parent were isolating because I am the only driver and knew i’d need help getting to and from the hospital. With both sets of parents with us I went into hospital, went home and went back. They waited outside with Ted till he could come in, then they waited as long as they could. Teds dad had work so had to go home, my mom was struggling with her conditions so my parents went home. I dont think anybody actually slept that night.
Then when I gave birth via emergency C-section everything crumbled. Our baby was poorly, he needed additional care and the only hospital that could do that was the other side of Birmingham to us. I saw my baby for a minute before he was taken to NICU and then again for another minute before he was transported to another hospital. Ted left and then until I was discharged the next day on the afternoon I didn’t see my baby, Ted or anyone. I was alone in the hospital vulnerable, riddled with anxiety and fear. I wasn’t allowed a visitor because everyone was following the rules…
In NICU at the hospital our baby was in only one parent at a time could go in, which meant neither of us had the emotional support from each other than we needed. It also meant that until I was discharged Ted was the only one able to go in, so not only had he been up all night he was now getting all the information about our baby and was having to ensure I was told but also our parents. He was so exhausted but didn’t want our boy on his own for more than was necessary. Again all this was because of the rules and guidelines hospitals followed that were given to us by the government…
I was informed I was still considered vulnerable as I was coeliac and hadnt had a pneumonia vaccine. After having the pneumonia vaccine we thought we were safe to start integrating with a slightly normal life again. Just as I was starting to adjust, we then were told that our little one was considered vulnerable because of his medical history. So back into isolation we went… This time we did the food shopping but it was our alone time. One of our parents would have Lewis we would go food shopping, come home put it away shower and then have Lewis back. Then after months we were told this was incorrect…
After months and months of isolating ourselves and our little one, with very few walks in the park to at least say hi to friends we were expected to go straight back to “normal” because thats what the government said to do. Again we followed the rules…
We followed the rules consistently, even wearing masks longer than everyone else seemed to do. We put our son at risk of lack of social skills because we were advised to shield him. We had to suffer alone in turns trying to understand what was going on with our son in NICU and piece information together as we were updated on different things. We stuck to the rules religiously and all while they partied, laughed, joked about the right answers to give…
I never get involved in politics on my socials or on here and I will continue not to, but I will say I am angry, I am hurt and I feel utterly let down by our government. But I will still continue to do what I believe is best for my family, friends, colleagues and more! Like Gina Martin post on Instagram said, I will continue to be better than them who have made fools of themselves and let us down
This diary entry is a short one, as we were very much at home and that was it! Its also taken a very long time to come to terms with trimester 3 and what happened during birth. So much so that I am writing this whilst weeks away from Lewis’ 1st Birthday.
Trimester 3 was where my body started to slow down and things became very painful. Not just because I had a heavy pregnant belly, but because my already fragile body was pushed to its limit and was still having to try and carry on.
Queue the hip subluxations, the misaligned jaw, the increased back pain and the pelvic girdle pain! Oh and lightening crotch is not something to joke about, and definitely should be discussed more! I had no idea what it was until describing to a friend what I was feeling. Pairing all of these things together for a “normal” person is too much, throw in that I have fibromyalgia and am more sensitive to pain and boy do we have a fun concoction!
Trimester 3 for me was very much Groundhog Day! The same thing every day, the same feelings and the same routine. Lockdown was still very active in the UK, but we were grateful to have our parents near. DISCLAIMER: In case you missed it in a previous post; I am the only driver in our household, therefore we needed help from our parents as I still had growth scans and midwife appointments to go to. I was also considered vulnerable due to not having my pneumonia vaccine and having coeliac disease therefore they would need to either do or take Ted to do our food shopping. Under guidelines, we were allowed this bubble (and was verified by our doctors).
Trimester 3 was also where my anxiety peaked, I really wanted to meet out baby but still in the midst of a global pandemic I wanted to keep him as safe as possible. This lead to the ongoing battle of wanting to give birth ASAP to get out of pain, but also never wanting to give birth because how could I protect him from this still very unknown coronavirus.
At 35 weeks pregnant I could no longer manage with the pain, the pain relief I could have felt even more pointless now and I felt stretched to the max. At 36/37 weeks we had another telephone appointment with our consultant who was pushing to go until overdue for an induction, despite already advising previously we could have an induction if my pain became unbearable. After pushing it was agreed at 39 weeks I would be induced.
The few weeks leading up to the induction date I was spending most of my time on our bed, feet elevated and impatiently waiting to get out of this pain. Then the evening before our scheduled induction I went into labour naturally. The flood of emotions I felt when this happen was wild! I was excited, I was nervous, I was anxious, I was full of joy! All these emotions carried me forward into the hospital alone, and kept me going when I was sent home. They then gave me the push to get back in the car and go back and insist that this was happening and I need Ted to be allowed in now. We were having a baby, and what a whirlwind that was.
I’ll be sharing our birth story separate to this and trimester 4, so keep your eyes peeled for that!
How did you find trimester 3? Comment below to share your experiences!
Gender was becoming a big topic for us in Trimester Two! We had a private scan at 16 weeks, they were able to see the gender clearly and they popped the gender scan and the gender in an envelope for us. At our 20 week NHS scan we made sure that they didn’t tell us the gender. Little did we know before closing out eyes that this would be the last time my fiancé would see our little one…
At the beginning of March we found out at a Gender Reveal we were having a boy! A massive shock as I was convinced he was going to be a girl. But honestly we didn’t care if he was a boy or girl, we just wanted a healthy baby.
Then the 15th March 2020 came… It was the day before I was due to return to work after a week if annual leave and celebrating my birthday in London with my Fiancé and lots of incredible GF food. My Head of Department called me a few days before asking about my vulnerability status to Covid-19 as the Government were putting new rules into place. After reviewing the information from Direct Gov it was ruled I was vulnerable as I was pregnant. We still weren’t sure about my medical conditions. I was feeling so anxious about what was going to happen over the next few days.
As of March 16th until my maternity leave started on June 1st, I was working from home 24/7. Until I physically could no long drive, excluding two days for when a family member passed away and attending their funeral, we were in social isolation. This meant I couldn’t see anyone and unfortunately my fiancé couldn’t either. We were incredibly grateful that his employers ruled anyone living with or pregnant themselves were to remain at home.
Then the government announced Lockdown. We discovered as someone with Coeliac Disease I am more prone to bacterial pneumonia and as Covid-19 was causing many to have pneumonia and I hadn’t had my vaccine for pneumonia yet I was even more vulnerable.
My mental health was very affected but with the help of my amazing fiancé, FaceTiming our family and closest friends, and my incredible team I had a lot of support! Unfortunately when it came to midwife appointments and scans, I had to go alone. Baby boy was a massive wriggler so we never after 20 weeks got a clear chance of a scan for Daddy! With the NHS you cant record your scan, so from 20 Weeks until he was born Daddy only felt and saw belly movements. I now feel more positively towards the scans as Ted got to attend the two standard scans. All the additional ones I went to that he couldn’t attend were due to having health conditions myself.
Aside from being in a pandemic and my mental health taking a plummet, pregnancy wise trimester two was a lot nicer to me! My sickness subsided finally at 4.5 – 5 months, I could finally feel baby moving at 24 weeks and being at home meant I was keeping my feet up more.
My bump was growing, baby boy was doing well and I was being consumed by heartburn by the end of month 5! Milk, milkshakes, ice cold drinks and orange heartburn relief chews where my best friends! My gestational diabetes check came back negative and my regular annual health check came back fine too.
All in all months 4-6 were relatively nice pregnancy wise, it was everything else around me that wasn’t quite right. But again, we were in a pandemic, national lockdown and I was self isolating. Three things I and Ted have never experienced before…
I would love to hear how your second trimester was. Comment below sharing your memories and remember everyones pregnancy journey is different!
Since the age of 13 I have struggled with constant pain in my joints, and it has and still is a very slow journey to finding a pain free and more enjoyable way of living. This post details the journey I’ve had from start to where I am now, which includes opening up about p personal frustrations and losing a family member.
At 13 years old I joined the Air Training Corps, better known as the Air Cadets. On and off, I spent around 4 years with the ATC and loved every second of it. It came with struggles, my school friends didn’t understand why I went and often made comments about the way I looked when I went. But it was linked to my decision to get myself a step closer to joining the RAF as an avionics engineer, which was my dream at the tender ages of 13-15, until I discovered Physics just wasn’t for me! Being in the ATC I become more active then walking round with mates or doing PE at school. I started doing Drill, playing field Hockey, Netball and found a love for cross country running I never knew I had. But that’s when my knees became very quite problematic and not doing what they were supposed to. It also become clear that my arms weren’t straight like everyone else when marching. Which is a massive issue when you want to compete in cross country and Drill competitions! Fall after fall, multiple twisted ankle injuries resulted in visits to the hospital for X-rays and finding out I had soft tissue damage diagnoses, were becoming too frequent for mine and my parents liking. The crunching noises my knees made, the clicking of my toes when walking barefoot and the swelling of my joints all become too much for a young me. And thats when my first doctors visit resulted in being told it was growing pains. I mean I get it, I was 14 years old but how much more growing did I really have in me? I think this was the last time I ever saw my knees when they weren’t swollen 24/7…
Fast forward to being 17 years old, I am in my second year of college and find standing up in the chemistry labs doing experiments too painful and am often sitting down more than others. I have lost a large amount of weight, and haven’t grown a centimetre since I was 14 years old. I’m now struggling with my shoulder, which maybe is because I have the weirdest accidents and funniest most clumsy Nan ever who managed to shut her boot on me onto my shoulder. That was checked over and was completely fine, Nan’s okay too! But was it the right or the left shoulder that happened too, I can’t remember… Anyway, I have not long been referred for an MRI after falling into the road because my knee gave way, which resulted in my school best friend having to physically PULL my jeans off my leg as my knee was so swollen! Oh and my Dad having to take me to my GP after just getting back from holiday (don’t think that was on his agenda). MRI’s are such a strange experience, as they’re super loud and make a weird noise but everytime I go in one I manage to fall asleep! Honestly if you’ve not had an MRI its hard to understand how crazy that is without the following description… Imagine being in a tub that has a Jackhammer going off right next to it, but when that stops it turns into a power drill and they just take it in turns really, oh and you have to remain super still otherwise it messes the whole thing up! Can you tell I’ve had more than one?
So I do some physio, and that doesn’t really work but I’m discharged anyway with a diagnosis of Ligamentous Laxity (which basically means really relaxed ligaments) but this was after the growing pains and Slatus diagnosis I received before the MRI. Now I’m 18 and going clubbing for the first time ever! I’m excited, I have had a little drinky drink at my house with some friends and head into town to pre-drink and head to the legendary Snobs. Now if you are from Birmingham in the UK you will know what Snobs is, and I must inform you my 18th was celebrated in old Snobs not the new one…
… Anyway, sidetracked a little there…
… So we have had one drink each and are walking over to Snobs down some steps and that’s when the most embarrassing thing ever happens! My knee gives way, I fly forward down the concrete steps in high heels. Somehow I miss smashing my face off of them, but my foot has chunks of skin taken out off and my knee is now throbbing and is huge! Like a boss I get up (with help from my friends) try and laugh it off, with some tears, and head over. I can barely walk but I make it into the club and play off like I’m chilling. I couldn’t get shoes on for like a week and had a scar that finally disappeared when I was about 20. For the next few years I battled with a love for heels, but my body hating it and having to give up wearing them more then every now and then when I was 20. The few occasions I have worn them since, I am pretty much unable to walk for days or even weeks. Oh and I have to take them off after having photos taken, which made looking for wedding shoes very interesting…
At 19 I felt the urge to work on myself to improve my body and self confidence. I found a love for the gym, started going out on weekends with my friends and just tried to be your “normal” young adult. I was going the gym 3-4 times a week, working with one of my longest friends from school who was my PT. We would work on exercises that wouldn’t irritate my knees and shoulder, oh and my hips, by simplifying movements or tailoring programmes for me. Then I fell on the treadmill. It was a minor fall, I was very lucky, but boy do treadmills burn!! The gym become a very big outlet of stress, anger and disappointment in the way things work out when my uncle was diagnoses with a very aggressive and well studied by myself brain cancer. Which unfortunately meant I was becoming more frustrated with myself when I started to struggle with things I used to be able to do. Then I met a boy and took some time out of the gym and stopped going to PT sessions. As you do 😉
At 21 I had one of the biggest heartbreak i’ve ever experienced! During an adjustment period with work, my uncle passed away after a very strongly fought battle with Cancer. During this very raw time I threw myself back into the gym, I went with a very close and super supportive friend who I hold very dearly in my heart for helping me with this incredibly difficult time of my life. She would try and keep me motivated when I’d get frustrated with myself. We even moved gyms to one closer to where I was living. But at 22 years old, after no longer being able to use weights, deadlift or even squat without my pain increasing and feeling completely deflated; I finally admitted to myself something wasn’t quite right and went back to my GP.
Now when your knees are constantly coming out of alignment, you feel like your legs are been pulled out of your hip socket and twisted, you’re letting people down with last minute cancellations (including your family), things start to eat up at you. Those feelings, with the support of my friend, encouraged me to go back to the GP be the most open about my struggles with my body than I had ever been. Finally the GP who had witnessed my subluxation of my shoulder, the delay in healing from whiplash from a car accident earlier that year and helping me get out of a gym membership said ‘lets get this sorted shall we, and find out why your body is doing the things it is’. That was one of the best days of my life, feeling that relief that someone is listening and that you’re not crazy is unreal!! That leads us then to the rheumatology appointment I discussed in my coeliac diagnosis post.
Now in my mid-20’s I have a diagnosis of very server hypermobility syndrome from the Rheumatologist and a diagnosis of Fibromyalgia from the Pain Management Team. I walk with a walking stick sometimes, I pretty much live in KT Tape and have had many, many appointments that I have attended over the last few years including physiotherapy that was every 4-6 weeks. I have also seen a specialist in London, who reviewed me and my case and confirmed I have components of EDS (Ehlers-Danlos Syndrome) but do not have the full package that would see me as someone who has that as a diagnosis. It’s been a long journey, but my diagnosis has been found and I have been working since 2018 on understanding my body and it’s limits. As well as understanding and trying not to get frustrated at my bad days, or overdo it on my good days.
The most important thing to take away from this is that despite the frustrations and feeling so confused and lost, it’s so important to trust your instinct and your own understanding of your body! If I didn’t I could have hurt myself, faced full dislocations and even could have made myself ill with guilt and feeling ashamed. So if something doesn’t feel right, please go with your gut and enquire it with the correct people!