Emily

On the 31st of October 2017 I had a routine appendectomy that changed my life forever. My neck was hyperextended during the intubation process damaging the ligaments that connect my C1 & C2 vertebrae together. Over the next two and a half years I was in A&E countless times. I spent a total of 18 weeks in hospital over the course of a number of different admissions with a whole host of unexplainable symptoms.

Eventually, I was diagnosed with craniocervical instability and atlantoaxial instability which is often referred to as internal decapitation!!! But that scares most folks so I generally explain it as my spine being unstable just below my skull, The damage to my neck caused me to develop postural orthostatic tachycardia syndrome, gut dysmotility and I have also been diagnosed with Ehlers-Danlos syndrome.

So after ten years of being in love with my best friend and everything that I had been through, it gave me the confidence to finally tell him how I felt and that man is now my husband. We have been on some amazing adventures together including me riding on the back of his motorbike for ten hours to go to Belgium to celebrate the one hundred-year remembrance of WW1 in Ypres.

Baby Freya

Recently, during the pandemic, we also welcomed Freya, our first baby into this world. She is a beautifully healthy & happy little girl who fills our days with unexplainable amounts of joy.

Due to my condition, I have met countless extraordinary and inspiring people including one of my closest friends Antonia & her mum Victoria both who have been incredibly supportive and a light in my life.

Your life is not over

Although I can’t tell you that living with this condition is a breeze – it does take routine, determination and even at times sacrifice to manage it – I can reassure you that your life is not over, that you do still have a future and there are happy times to come. Remain optimistic & be positive. It is important to be forgiving of yourself when you fall, remembering that this doesn’t define you because it is the getting back up after that truly counts.

POTS isn’t a burden, it’s a key. Use it to open the doors to things that you want to achieve.

Thank you for reading my story.