I always knew I was different
I've always been the odd one, the one that stands out from the crowd for some reason, even if I didn't want to.
I never felt the same as others, always felt like I had to try harder to fit in with everyone, even my family.
I was the sporty one, a competitive swimmer, dancer, and gymnast, the "weird bendy kid" a tomboy, a power ranger and ninja turtle fan, you'd hardly ever find me sitting still unless I was writing poems and stories.
I was always in trouble in school, mainly for "not concentrating" but my behavior could be rather "wild" too.
My mum was called in many times for the silly things I used to do, screaming up and down the corridor, taking things that didn't belong to me, and keeping a dead frog in my pocket 🙈
Although I struggled with classwork at school, I excelled at Art, P.E., and Drama.
I won awards for my Artwork and got to meet the mayor of Southampton at the Borough In Bloom show.
One of the sports I was and still am very passionate about is swimming.
My dad was a competitive swimmer for Hampshire, I followed in his footsteps competing at many galas, later on in life I would be a lifeguard at the very place I trained at.
Teachers started to get worried when I was zoning out and couldn't remember what was being said, at first they thought I was daydreaming… something else my mother was called in for, but when I started having seizures they all realized it was something much more serious.
At 8 years old I was diagnosed with Epilepsy, I had to be really careful in the pool not to bump my head.
There were school discos I wasn't allowed to attend because of the lights, but to be honest I don't remember much about that time period.
As the years went on I still had/have abnormal EEGs, but apparently not concerning enough to be on medication, I've also been fit-free for years now.
But unfortunately, my illnesses didn't stop there, and little did I know I was about to find out a lot about my family's medical history, and my own.
So mixed up
My teenage years are quite frankly a blur, I've either forgotten or blocked out huge chunks of that part of my life.
I remember some good times, playing football in the park with my brother and our friends, going swimming, and dance classes, but I know a lot of horrible things happened too.
I wasn't safe at home, or my neighborhood, or at school.
I was used, bullied, taken advantage of, and ignored by the ones I loved the most.
I spent most of those years incredibly angry and confused at the world and everyone around me, why no one would help me, inside I was screaming for help.
By age 14 I had high levels of anxiety and IBS, which would continue all through adulthood.
I had dropped out of mainstream school and after running away from home tutoring I was eventually put into a special education school.
I got into fights with anyone that hurt me.
I was so mixed up, truly felt like I was destined for nothing.
Writing poems/songs and stories was how I got through most of that time, pretending I was someone else in a story, and being able to write feelings and experiences in songs.
I also loved singing, but apart from choir, I had no confidence to sing in front of people.
I failed my GCSEs but was told I could still go to college on a Foundation degree.
I wanted to do Performing Arts but ended up doing Beauty Therapy.
I stuck it out for 2 years but it wasn't for me, I ended up getting a little job working in a shop.
At this point my anxiety levels were sky-high, I was terrified of making a mistake.
I felt like everyone hated me, everyone I worked with seemed to look at me as if I was stupid.
I couldn't work the tills properly, I was always asking for help or doing something wrong.
I didn't stay there very long and took a job as a barmaid in my local town.
By the time I was 19, I had 2 jobs as a barmaid, I hated it and would never do it again.
Somewhere amongst the chaos I found the courage to do my NPLQ (National Pool Lifeguarding Qualification) and from there got a job as a lifeguard at my local pool, the very pool I'd trained and swam at.
I loved it, I felt like this was the start of a brand new life.
Modeling, Acting, and Zombies!
During the period that I held a lifeguarding job, I also started doing photoshoots for local photographers.
I became one of the resident models for a studio and eventually started doing photoshoots for lad magazines.
Art Nude/Glamour modeling was fun, and I've never felt embarrassed doing it. I felt empowered, the images were tastefully done, and I knew to let someone know where and who I was working with too.
I wanted to try everything, so I took as many modeling and acting gigs as I could.
I'd always been extremely flexible, all the years of dance and gymnastics came in handy there, and I took up Pole dancing, it's a great way to stay fit!
I trained to the intermediate level with Pole Performers and had some great photoshoot opportunities too.
One day I had an email from Playboy, inviting me to test for the magazine, but as a UK model, I would need an American work visa, which at the time I couldn't afford to do.
It will always be my What If moment.
Then one day I took an acting job up in Newcastle to be a Zombie in a horror film.
I must have liked the North because I moved there shortly after and have been here ever since.
Since then I've been in a few horror films, zombies seem to call to me 🤣 as well as killer clowns!
I took some time off to raise my 2 boys in 2013 and 2014, little did I know I'd be taking things extra slow for a few more years!
The first piece of the puzzle
I decided to try and get into uni to study music, and after telling them about my years of singing in choirs and writing songs they accepted me!
This was amazing! I never thought I'd get in!
The next year was a mix of emotions.
A few years prior we had been going through our youngest son's autism diagnosis, and I was starting to see similarities between how he and I acted at school. These similarities would present themselves again at uni.
Not long into my first semester, my tutors noticed I was having trouble remembering things.
I was studying but couldn't take in the amount of information.
Taking notes was a nightmare, everything seemed important.
I was put forward by the uni to get help and was diagnosed with Dyslexia.
This was a turning point for me, I knew then that I wasn't stupid!
All those years I'd felt dumb, and been called stupid and lazy by teachers, so-called friends, and work colleagues.
The more I researched about it the more answers I got.
After speaking to my dad (as I knew he had trouble reading and writing) he told me that he was diagnosed with Dyslexia as a child, but back then he was told to just basically get on with it!
He was a private person and never liked talking about his feelings much, so he never spoke about it to anyone.
My precious dad passed away in 2022, 3 months after walking me down the aisle to my best friend.
Neither my heart or head was in the right place to carry on with uni, but making it that far was enough.
The second piece of the puzzle
After coming to terms with my Dyslexia diagnosis I couldn't shake the feeling that something was missing.
I remember going to some therapy sessions with my mum when I was younger and ADHD was mentioned, but because I wasn't "hyperactive enough" it was dismissed and I was just labeled as another troubled child.
Dyslexia and ADHD are quite common together, and my mum said she always thought my dad had it.
So I started looking for answers, getting as much information as I could find about my past, school, behavior, hobbies, etc, and booked a private consultation with a psychiatrist.
We went through everything, I sent the medical records I had, my mum told me things about my childhood that matched up and the doctor spoke to my husband about what he had experienced with me.
It was an emotional experience but I was relieved when the doctor diagnosed me with ADHD and Social Anxiety, it just confirmed all my suspicions and I knew I wasn't crazy.
She also said I absolutely have ASD but she couldn't "officially" diagnose me with that as it was an assessment of ADHD.
I'm on the NHS list… still waiting for that.
Finding out all this was like seeing myself for the first time, it felt like my whole life finally made sense.
I knew I could go forward with my life with much more confidence and clarity.
But there was more to come, the biggest box that the puzzle came in...
The roots
At the beginning of 2024, I finally felt like I had my life together again.
I was finally learning to live with the loss of my dad, I was back on my fitness journey, and since 2022 I have been back at gymnastics.
Then around February, I started to feel the most debilitating fatigue I've ever had along with muscle weakness, slurred speech, and brain fog.
I couldn't get out of bed some days.
There would be good days and bad days so on those good days I could do some housework or some exercise.
I had noticed though that my knees were popping and cracking much more than they do.
I've had poppy knees for years, I just assumed it was the years of doing gymnastics and dance.
I decided to go to the gym on one of my good days, it was a very basic routine, one I'd done for years, but I barely made it through.
Walking out of the gym I almost fainted, I just knew I had to get home and call a doctor.
At home I collapsed on the bed, my legs were so weak and I could barely breathe from the anxiety.
I called 111 and they advised me to go to the hospital.
At the hospital, I was admitted as they suspected MS or M.E.
They needed me to have an MRI scan which I said I would wait for at home.
Things weren't adding up for me though, like the feelings I had before with the dyslexia I knew there was something missing, and as it seemed, so did the doctors.
I was told there was a team of specialists looking over all my medical history as it looks like there are links.
I kept seeing Hypermobile Ehlers-Danlos Syndrome pop up amongst the M.E and MS research and decided to look into it.
I was shocked...THIS WAS IT!!
THIS IS ME!!!!
I requested all my medical records right back to my Epilepsy at Winchester Hospital, literally everything, all my pregnancy notes, the times I'd gone to the hospital with fainting spells, injuries, everything!
And it all added up.
I had dislocations a number of times, the biggest being when I was pregnant with my second boy, my hips would dislocate to the point I needed a support band around my waist to hold them together, and eventually had to be induced as the pain was too much.
I've been complimented for years on my extremely soft skin, my boys would actually cuddle up and stroke my arm ❤️
The years I spent with bladder and menstrual issues all made sense now.
And let's not forget the IBS which I was eventually diagnosed with a few years ago.
There's a test called The Beighton Test that measures joint hypermobility, I got a solid 9/9
When I brought it up to Mum she mentioned that my dad had said he was "double jointed".
That's exactly what I thought I was too, I can literally bend myself in half!
Armed with this new information I called my doctor and explained everything, it turns out he completely agreed, and said that I still need the MRI to rule out everything else but a diagnosis of hEDS is where we're heading, unfortunately, I need to wait for an "official" diagnosis to seek any medical help, but he's given me some advice on pain management and said swimming is a great way to exercise without putting too much pressure on the joints.
I finally felt a sense of completion, after all these years I finally had the answers to my illnesses.
What’s next?
Right now I'm trying to find my footing as a disabled model, building a portfolio with my mobility aids.
I can't walk without my sticks, my body still feels so wobbly, but I'm working with a PT to help with my fitness and stability.
I've joined The North East Disability Swim Team with my youngest son, and we hope to compete in the near future.
I am continuing to advocate for Dynamic Disabilities and Chronic Illness by sharing my experiences, help, and advice on social media.
But more importantly, I'm learning more and more about my condition every day, learning to adapt my fitness, to adapt everything, for knowledge is power right?
My MRI is at the end of July, and although I know what I have, I also know I still have a journey ahead of me.
But I think I've learned that whatever life throws at me, the one thing I never do is give up, there's always another path to take.
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