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!
with love
The Unlucky Coeliac xo
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