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Chronic Illness Rollercoaster

By Rachael

I don’t know where to start, mainly because I don’t know exactly when my journey began.


From a young age I was always feeling unwell, suffered from stomach aches and headaches, but that’s just children right? They all have their good and bad days and no one is exempt from this regardless of their age.

Diagnosis


I would say it is quite possible that I only ever received my diagnosis of Ehlers-Danlos syndrome and associated conditions through suffering with Migraines. They stared just before I went to comprehensive school, I must have been around 11 or 12 years old, but by the time I was 14 they had become chronic. I thought at the time things were hard enough only ever attending school 2-3 day a week, I had very few friends and very little support from teachers. I was in the Air Cadets which allowed me access to a lot of opportunities I never would have had, and I wanted to join the Royal Air Force as a medic. Unfortunately though there are criteria you have to meet to enlist. It didn’t seem like that was possible, actually, at the time it seemed impossible to hold down any type of job!


I began to worry what my future would look like...


Would any one employ me? How could I work if I couldn’t predict when I would have a migraine or how many I would have? Were any medications or the ‘migraine hacks’ going to help?


No one could give me an answer.


Studying & Surviving


I made it through my GCSE’s and I did alright. My results actually reflect quite well on the subjects where I had support, although compared to the majority of my year group, they weren’t the best. I felt extremely deflated, I had tried so hard, yet I didn’t manage to get any of those A*!


I decided to head back to school to study four A-levels, the only one I my year to study more than three. Art, Geography, Psychology and Classical Civilisation, a random combination to many but to me they were what I joyed and what I wanted to learn more about. My school attendance remained at 2-3 days per week but I was doing it…



Then I woke up on the 10th January 2018...


I had never been so ill, I struggled to walk, my head was killing, my hearing was diminished. I was scared, so was my mum. That was the day things changed, from a semi-normal life to one where it seemed like all I could do was survive. Upon my GP’s suggestion my parents paid privately for me to see a top Migraine specialist in the National Hospital of Neurology and Neurosurgery in London, which is where I received my first diagnosis.


I remember sitting in that waiting room. Around August/September time in 2018. I don’t think I was nervous, more numb. I left the appointment with a list of likely diagnosis, needing to visit more specialists that I could ever imagine but we had hope, we hoped that things would get better.


I waited for what felt like an eternity for things to ‘get better’ and for my life to return to ‘normal’, but it hasn’t, and it most likely never will. Unfortunately, that’s the thing with chronic illness, they don’t just disappear.



Although now, sat here in front of my laptop I am proud! I never thought I could get to where I am now. I suppose that leaves one question...


Where am I now?


Well it’s August 2023 and I am sharing my story with the world. I’ll be turning 23 in December, and I have a bank contract as a health care assistant in a private hospital. I volunteer for St John Ambulance, and I am working as an event medic!


I never thought I would say this, but I have qualifications in First Response and Emergency Care, and I hope to continue upskilling, so I can develop my knowledge and skillset. I am also in the process of completing a course to be able to train first aid and first response in the community and workplaces.


I have completed an access course, and certificate of higher education in Health Sciences with the Open University. My dream is to become a qualified Paramedic so I can continue helping others!


There have been lots of tears from anger, sadness and happiness in my journey, and I know there will be more.


Rachael ( @metallic_medic Coming soon to Instagram! )

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