Hiya nerds, Leanne here! I would like to introduce myself a little…
I am in my mid/late 20’s, living in Birmingham (UK) with my toddler and husband. I have a huge passion for music, including getting into the nitty gritty of song development and forming connections to lyrics.
I started my first ever blog at 14 which is so cringy I will not even go there… After finding my writing style I then started Music n What Not back in 2015! Back then I was still very much a newbie and was using my little platform knowledge to build, with the help of a dear friend, my blog on Blogger!
Four years later I had a lot going on in terms of health and medical conditions, that I then dabbled for a few years with this blog under a different name! The Unlucky Coeliac was born and saw me sharing some very personal life experiences and a few gluten free food finds. But here we are 3 years later and something was just missing and blogging just felt like such a chore I barely did it…
What was missing you ask? Music!
For a long time i’ve convinced myself that music isn’t as heavily in my life as it was back in 2015-2018 as I don’t have direct links to the local bands (old school friends) I once did. I also stepped away from 3 Songs and Out, an incredible webzine that you have to check out, because I had massive imposter syndrome!!
The truth is, it still is a huge part of my life! Exploring new artists and bands, reliving my scene kid youth and even rediscovering older artists/bands are absolutely a need for me! I love talking music, sharing and receiving recommendations as well as just being an absolute nerd for the artwork, videography and story building!
Therefore I have decides to transfer all posts from Music n What Not Vol 1 (Blogger edition) across so you can now also see those here too! 🤘🏼 And all The Unlucky Coeliac posts will be visible in my The Unlucky Coeliac page!
And what does that mean now?
I guess its a here we go again!
Buckle up and join me on an ever growing adventure down the rabbit hole that is music n what not…
Lets cut to the chase shall we…
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!
The Unlucky Coeliac xo
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
The Unlucky Coeliac xo
As someone who is in their mid to late 20s and recently became a first-time mum it hit me the last few months how important it is to actually take care of your skin. I was definitely one of those teens the wore a lot of make-up and didn’t really think about the consequences of falling asleep with it on or not washing it off properly or using face wipes, cringed I know!!
Now I’ve started taking care of my skin and I’ve seen the benefits of doing it, it is something that I wish in my teenage years I fully understood and would have done for a long time. Why, because now I feel so confident in my own skin that I very rarely wear foundation, where as before I would not leave the house without foundation on and would pretend that I was wearing no make up.
Back in April I was very fortunate that my mum purchased a skincare product for myself and my brother after using it herself, and to be completely honest the experience I’ve had with it I would recommend it to anyone and everyone!! Now I’ve unfortunately been subject to a bit of a scam and used a product, a little bit similar to the one I am referring to, so I was sceptical when my mum first approached me with it.
Now before I go into detail about what the product is I just wanna give you a bit of background on my skin and my skincare routines in the past, so that you do know that when I tell you what the product is that I am being genuine! You will see via pictures what my skin was like, how its changed as well as my honest opinion!
When I first started senior school, so in the UK that is at age 11, I didn’t really have too bad skin. Then when I became 12/13 and hormones really kicked in I noticed that my skin was oily and was very spotty. From then on it became a vicious cycle of trying skincare products that would work, that my skin would get used to and they would stop working. I’d give up, stop doing a routine for a few months and then start the cycle all over again. I honestly don’t want to think about how much money my parents have spent over the years helping to try and make my skin better! From products considered cheap to mid range in price to very expensive. We’ve tried products with Witchhazel and products with tea tree oil, or cucumber, eucalyptus everything you can think of i’ve used.
The biggest annoyance for me (and probably my parents too) was when we moved to Proactiv; this is a very expensive high-end product which you can’t just buy one of the products, you do have to buy the full package. My parents spent a lot of money for it to work for the first 2 to 3 months and then the cycle began again. My skin got used to it and it no longer worked, this was the breaking point I think for me! I just fully gave up, what’s the point was the biggest thought following close with “I might as well carry on wearing my make up to cover and hide the spots and I’ll just wash my face normally”.
So from here on I would just wash my face with a standard face wash, didn’t really moisturise regularly and continued to wear a lot of make up! This last a very long time, until I reach the age of 22. Makeup was becoming an annoyance as I was in the gym all the time and had got used to not wearing it when there, that putting it on felt a chore. This is when makeup stopped for me, I fell out of love with it and no longer felt the need for it unless I was getting ready to go out with friends and wanted to look more glamorous.
At this point I though maybe my skin will get better, and it didn’t because lets face it I still wasn’t looking after it! I was also drinking alcohol and eating greasy food nearly every weekend. So this was the acceptance stage for me, this was my skin and it was always going to be oily yet dry! The dry skin is very heavily weather related for myself but I am very pale skinned so it is quite hidden until it becomes flakey.
So that’s my background on skincare, thank you for sticking around and holding in there with me! Now the product my Mom kindly purchased me is the LumiSpa and I can hands on heart say it’s incredible! I use the wash thats best for my type of skin, use the moisturiser and eye cream (which I didn’t even know how to use, Ted had to google it for me lmao) as well as a toner for my skin type too! Now as I said I was still skeptical, and things got a bit stressing with fears of our ceiling falling down again (long story for another day)! So what did I do… I stopped my routine and low and behold the spots and super oiliness returned!!
To my surprise my skin isn’t as oily as I thought, as long as I look after it! And for the last 3 weeks I have been back on top of it and the results already are incredible! I have a natural glow, which lets not lie we all want one of them! I’ve also got such a nice feel to my skin and I am here for it!
For me what makes this product even better is it has eliminated leaning over the sink, which with my fibromyalgia and spinal issues this has made my life a little easier! Even more so that it’s lightweight, takes 2 minutes and I can do it sat down. I find this product quite disabled friendly, I wouldn’t say it is 100% as if you do have a disabled or chronic illness/condition that restricts you from grasping/holding something it is equipped to support you. But for disabilities, chronic illnesses or conditions that enable you to grasp and hold onto things this would work for you!
Ending this super long post, again thank you for hanging in, I will say the top 3 things I’ve learnt and wished I had paid attention to when I was younger are; Moisturiser morning and night, don’t forget about your neck, keep up with a skin care routine and don’t lose hope!
If you would like any further information about the Lumispa please comment, message me on instagram or check out NuSkin’s website! I am now a distributor of the Lumispa, which I want to be fully transparent about, purely because I believe in this product and have seen what it can do first hand!
The Unlucky Coeliac xo
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!
The Unlucky Coeliac xo
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!
The Unlucky Coeliac xo
Welcome to my pregnancy diary introduction. Here I will be explaining what my pregnancy diary will consist of, why I am sharing it and how it will be shared…
Disclaimer… As I am writing this post my baby boy is currently 8 week’s old and asleep in his moses basket. Why has it taken so long to write this you ask, well being pregnant is one thing. Being pregnant with fibromyalgia and hypermobility syndrome is another, but then add in a global pandemic, lockdown and a state of vulnerability to covid-19 and you have a whole lot to deal with. Therefore, I feel it is better to reflect and share my experience now my pregnancy is over.
The reason why I am sharing my pregnancy experience is because I didn’t have another person to speak to who had been pregnant with fibromyalgia or even hypermobility syndrome, and there wasn’t much out their on the wide web I could find. That itself was a little daunting as I didn’t know if I was being too cautious, not cautious enough or even if what I was feeling was “normal” for me. Therefore I am putting my experience out there in hopes to help someone who is in the same boat, or is supporting someone in the same boat. But also to help any momma’s to be who are struggling with anything I mention such as Pelvic Gurdle Pain and Morning Sickness.
I will be splitting my pregnancy experience into the following sections;
Trimester 2 – Global Pandemic
Trimester 3 – Health Conditions and Anxiety
Once each of the above posts have been published they will turn into links to guide you directly to each one!
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!
The Unlucky Coeliac xo
Firstly, thank you for your patience with my absence. Secondly, blogging for me is about being honest. Sharing with you how things like music make me feel, experience and my general thoughts/opinions. Therefore this post is me being as honest as I can about why I’ve been distant from blogging and reviewing for so long. And to explain what’s been going on since December 2017.
So in December 2017 I plucked up the courage to go to the doctors, to try and get them to understand what I was dealing with. At 22 years old I had been living every day for the last 9 years with chronic pain in my knees. A chronic pain which had spread to my left shoulder, hips, wrists and fingers, ankles and toes, elbows and lower back. I am suffering with joint movement, where often my knee cap wouldn’t be in the right place, and could be visibly seen. My left arm would be much longer in appearance as my shoulder would partially dislocate. My hips would move around often resulting in serve pain. And finally they listened and referred me to a Rheumatologist!!
Along came the appointment in January 2018, where I was asked questions that if it wasn’t a doctor I would usually lie about. Had to do things like touch my toes, stretch my arms out and show how close my thumb can get to my wrist. Then the Rheumatologist confirmed I had scored 8/9 on the Beighton Score, I had severe Hypermobility and would need an Echocardiogram, MRI of my lower spine and pelvis, blood test and would be referred to a specialist Physiotherapist.
In February the results of my blood test where back. Low vitamin D levels and Coeliac Disease. That was the biggest shock, as I didn’t know it was being tested as I only knew about my Thyroid being tested. This meant a Gastroscopy was now needed and I must live a Gluten Free life. But the best news from that was no sign of any arthritis kicking in yet (as I am prone to getting it at an early age). Buzzing! Then I had my MRI & Echocardiogram done.
MRI results weren’t the best as they showed problems with discs in my spine, meaning I have things to look out for which could mean an A&E trip. But on the flip side my pelvis was okay, which was great news!
So April lead to another doctor’s trip as now my right foot was turning in. With anticipation I explained what was going on, and after an examination was referred again to another specialist who then referred me to Podiatry.
Roll on to May and I’ve had the Gastroscopy test (sedation is a very strange experience I must admit), and the results are back confirming I must live a Gluten Free diet due to having Coeliac Disease – 100% confirmed. It is great to have confirmation that I am doing the right thing by eating Gluten Free, but even better results came back for my Echocardiogram! The results showed no problems with my heart, so at least my heart is behaving!
Physiotherapy sessions are going well with each one so far focusing on different areas of my body. There are talks of moving from exercises to physical activities to try and feel more active and like my old gym going self before the pain and dislocations got too much.
Podiatry have told me no more Converse (but I can’t part ways yet so still wear them but not as much) and high backed supportive shoes are a must! I’m still looking for a pair that I like and can wear at work as I work full time in an office and I need the support as I can often be on my feet for long periods due to being a trainer. More so I need the high back and support because I have to wear an insole in my right shoe, which makes me look wonkier than normal which is a little bit funny lmao.
With all this I have had to come to terms with a lot of things the last few months however I am now in a good place. With all these tests now nicely finished, and only regular trips to physiotherapy and podiatry, I am getting back into my routine. I am doing yoga, and looking to start cycling again (as advised by my physiotherapist) and getting back into writing. Which has all contributed to me being ready to get back to what I love; blogging, reviewing and sharing my thoughts/opinions with you all. I’m looking at music and adventure posts like before, but now looking at food and hypermobility posts too! I have found my silver lining…
So… I am 23 years old living life with Chronic Pain, Severe Hypermobility Syndrome and Coeliac Disease. I am learning to be open about things, to be realistic and to let go of feeling ashamed that I will not be able to do everything without help – when I said learning I definitely mean it with that bit as I am so stubborn aha. As well as learning to listen to my body and trying very hard to not see my conditions as massive negatives.
My advice to anyone regardless of age or how you feel about what you’re going through, make the doctors listen! Listen to what your body is telling you. It knows you better than you know you!
If you have any questions please feel free to get in touch in the usual means!
Thank you all again for your kindness during this time of disappearance xo