My health has been up and down for as long as I can remember. From tummy issues as a baby, asthma from 3 yrs old and joint problems beginning as a teenager, I have experienced it all!
I grew up feeling different to everyone else. I fitted in socially and was outgoing but quiet. I enjoyed my own company and observing my peers. Early on I realised that things my friends found fun and easy were rather challenging for me. In primary school I couldn’t understand why my friends liked to run everywhere (running hurt my knees) skipping is what I found fun and comfortable. To my friends amusement. I spent most of my childhood back and forth from A&E with sprained ankles, wrists and knees. I was known simply as the clumsy kid.
As I hit puberty the differences between me and my peers became very clear. I didn’t have the same stamina as my friends. I could just about make it through the school day before rushing home to lie down and rest. My parents thought I was just becoming a lazy teenager. I had always struggled with extreme tiredness and pain but at this point I didn’t know how to verbalise how I was feeling. I struggled through high school telling myself everybody suffered aches and pains plus everybody gets tired! I thought I was pathetic for struggling with daily tasks and I was a drama queen for feeling pain.
Its crazy thinking back to this time of my life and how incredibly harsh I was to myself. One of the greatest lessons I have learned thanks to chronic illness is never compare yourself to anyone, everybody has their struggles. Plus be kind to yourself, not everything is your fault! I wish I could go back and talk too my younger self.
By the time I was 15 I had developed a whole load of new symptoms! I always had some sort of bug or infection. I was now the kid that was always sick. So I had my tonsils removed, every doctor I saw said I would feel like a different person after the operation and it would prevent recurrent throat infections. Sadly this was not the case.
Around the age of 16 I began suffering from periodic swelling in all of my joints. Particularly my knees, writs and ankles. My parents began to realise I was unwell, as they watched me drag myself out of bed every morning. They saw me make adaptations for daily tasks, for example sitting on the floor to fill the washing machine due to back pain and pressure in my joints. At this point I was constantly taking ibuprofen and paracetamol to make it through the day.
So began years of doctors appointments, blood tests, scans and physiotherapy! I was bounced from service to service with very little support, no diagnosis or treatment options. (I may write a post at a later date about my experience with the health services on the isle of man)
Fast forward to 2017, I am scrolling through facebook and I stumble across an article by the Washington post about the dark side of flexibility. I am very flexible so begin to read the article. This is the first time I ever hear of the condition Ehlers-Danlos Syndrome (EDS), I could have written the article. It was as if someone had taken a page out of my diary. I knew instantly I had some form of a connective tissue disorder. I shared the article with my parents and they kindly they payed privately for me to see a specialist rheumatologist in London as we had no faith left in the health service on the Isle of man.
During this private consultation I was diagnosed with Hypermobility Spectrum Disorder under the 2017 classification. This was a very bitter sweet moment. I finally had a name for my condition but there was no cure.
So began a new journey, one we were not expecting. A battle with the health services to acknowledge my diagnosis and offer me a treatment plan. Unfortunately, in November 2017 I ended up with sepsis from misdiagnosed pneumonia and my world was turned upside down yet again, but thats a whole other story.
I hope this gives you a brief overview of my health struggles. I will go into more detail in future posts.