“It’s okay for things to change. Just because you envisaged your life going one way, it doesn’t mean it can’t be great when you don’t meet those ideas.”
Meet Rosie, A Note of Hope's chief social media ambassador (if you are active on our socials you may know Rosie from some of our recent content!). Rosie is diagnosed with Ehlers Danlos Syndrome, along with its many co-morbidities.
Despite her struggles with her conditions, Rosie shares with us how she has found joy in her love of animals, how getting back into studying and taking on a volunteering role has helped her grow her confidence, and how her connection with the A Note Of Hope community helped her find a supportive circle of friends.
Q: WHAT HEALTH CONDITIONS DO YOU LIVE WITH?
A: My diagnoses are Hypermobile Ehlers Danlos Syndrome, Mast Cell Activation Syndrome, Postural Orthostatic Tachycardia Syndrome and Fibromyalgia.
My journey to a diagnosis was very drawn out and traumatic. I’ve had health issues since the day I was born and for far too long I was told it was all in my head. One doctor even told me that I should be put into a mental hospital.
It was only when I had some more serious issues arise in my 20’s that I was finally diagnosed. At the beginning of 2016 I lost the use of my legs for four months and it was only after becoming too weak to move that I was finally diagnosed with EDS (Ehlers Danlos Syndrome) which affects my connective tissues, as well as it’s many co-morbidities, including Mast Cell Activation Disorder (MCAS), Postural Orthostatic Tachycardia Syndrome (POTS) and Firbomyalgia, which all have a massive impact on my quality of life.
Q: WHAT HAS BEEN YOUR BIGGEST CHALLENGE?
A: The hardest thing for me has been adjusting to the limitations caused by my conditions. Before my health started to deteriorate, I was really enjoying my life.
I am a big animal lover, and loved my role in our family's business which centers around horses. I was a keen rider and loved playing polo. My role in our business was teaching children how to ride and play (polo). My job, social life, and hobbies were very much all rolled into one.
But when I became unwell, I lost everything. Having to step back from riding, something I was both good at and deeply loved, was the hardest thing I have ever had to do.
For a very long time I was a full time crutches user and I had very little independence because of my mobility issues.
Going out anywhere took so much planning - making sure routes were accessible, that I’d had enough rest leading up to it and had taken the right medications to get me through.
In 2022, I worked really hard to get to a point where I wasn’t dependent on my crutches or mobility aids, but even now that I have more independence I still need to be aware of how much I am doing. In the past 6 months, I have been in hospital twice and have had periods where I have been unable to get out of bed.
When you’re really unwell and going in and out of hospital, everything stops. Your life is on hold whilst everyone else’s lives keep moving forward. Even now that my health is at a more stable point and I can do things again, some of my friendships have never returned to what they used to be.
I know it’s hard for the people I knew before to see me now, they struggle to know what to say or how to handle it, and sometimes people don’t recognise me because my illnesses and the treatments I’ve needed have changed the way I look.
Q: WHAT KEEPS YOU GOING AND BRINGS YOU JOY?
A: One of the things that has remained constant in my life has always been my love for the outdoors and my animals.
When my health was at its lowest a few years ago, and I was missing spending time with my horses, we bought a chicken coop for the back garden and 6 chickens. It gave me a reason to get out of bed in the morning and I would often just go and sit with them. It was something so small, yet at my worst it was enough to keep me holding on.
I have always tried to find joy in something every single day. Especially when my symptoms are flaring or I’m just having a bad day, I try to hold on to the smallest things that brought me a little happiness that day - Whether that be popping out to the shops, making time for a cup of tea with my mum, or being able to ride my horses with my dad.
Rosie's three beloved horses - Lolita, Domino and Minnie - who bring her so much joy!
Q: TELL US ABOUT SOMETHING YOU'RE PROUD OF?
A: It took me so many years to accept my health problems and the impact they have had on my life. I have always found it really hard to let go of the vision and dreams I had for my future and even though it’s been 6 years since I first received my diagnosis', I still struggle with the anger and sadness of that loss. A few years ago I had reached a point where I was seriously considering ending it all. Thankfully, I found the strength to try and fight.
I found an amazing Pilates teacher, who is the real reason I am now able to walk again.
For 2 years, I went to one Pilates session every other week and, after 5 years of being on crutches, I was finally strong enough to be able to hold myself up without any mobility aids.
I'll never forget the first time I walked without my crutches - My dad took me to watch a polo match at the club where I used to play. I was nervous about leaving my crutches in the car, but decided to be brave.
I walked in and everyone was so excited and couldn’t believe that I was walking freely, but I don’t think anyone was more excited than me.
Since then I have never looked back - I try and do something everyday to keep up my strength so I don’t lose the muscles I have rebuilt. I never take for granted that each day I can get up and move freely without aids.
Being free of my crutches gave me so much independence and I was able to go back to studying. This was a big step for me as my last experiences of high school are not something I look back on fondly.
My health started deteriorating when I was in my last year of high school. My uncontrolled symptoms meant that I ended up missing a lot of my classes and I was met with a lot of frustration and anger from my teachers, who just weren’t understanding at all. In the end I came to hate school and have since been anxious about going back into an environment like that.
But taking part in this new business course, I’ve been able to explore different options that fit in with my needs and have discovered new things about myself.
I had spent my whole life training for my role in our family business so it was scary going on to do something new, but I’ve found it so exciting and rewarding.
Getting feedback for my first assignment will always be a moment I’ll remember - with my past experience of school and unsupportive teachers, I was fully expecting to be told I would need to re-do my essay or that I wasn’t cut out for the course…but I passed to a very high standard and my tutor loved my business idea!
I have also taken on some volunteering roles in my local community.
After being stuck at home for so long, it has been amazing to put myself back out there doing something I enjoy. I am a very social person and have thrived being back out in the world, welcoming all of the visitors who come through and forming relationships with others who work/volunteer there!
I still get moments of sadness and grief for the life I could’ve had - I don’t think that will ever go away. But I’m now able to look towards the future, which is something I couldn’t do before.
I’m proud of myself for being able to change my mindset and think of things in a more positive way.
Q: WHAT MADE YOU SO PASSIONATE ABOUT BEING
INVOLVED WITH A NOTE OF HOPE?
A: I have been involved in A Note Of Hope since the beginning, when there was only a small group of us exchanging cards for our birthdays and catching up on our monthly zoom chats.
Despite never meeting in person before this year, I felt such a deep connection to everyone. It was so nice to hear the stories of others who were going through a similar thing to me with their health.
Rosie has made a great group of friends through A Note of Hope.
I had such an active social life before I got sick and then overnight it all disappeared. I spent so many years on my own, pushing away the idea of friendship because of the hurt I felt from losing my old friends.
I am passionate about being involved in A Note Of Hope because it gave me such a supportive network of friends, and I wanted to be there for others who felt lonely in the same way I did.