Customary to me, this blog reflects on what has been a very mixed year. Incredible highs, the highest of highs, and yet deep, dark, terrible lows. How can a year be so bipolar? So good, yet so bad, all at…
Six months ago today I went to Buckingham Palace to receive my MBE from His Royal Highness, The Prince of Wales. Six months since I became a Member of the Most Excellent Order of the British Empire at the age…
I am disabled. I am covered in tubes, bags and scars. I am perfectly imperfect, not what society defines as beautiful. I don’t feel beautiful. However, I am comfortable with myself and my body. I do not resent the way…
Today I had a very successful hospital appointment at the National Hospital for Neurology and Neurosurgery with the neuromuscular team, seeing Dr Ros Quinlivan. The outcomes of the appointment could be crucial for myself and my family, and turn everything…
The #ANurse4TheJs fundraising page is located here: https://mydonate.bt.com/fundraisers/anurse4thejsHere is our campaign video: The J’s Hospice have been supporting me since April 2011, and within the first fortnight my hospice nurse saved my life. Since then they have supported us in a…
On Thursday 13th October I attended the Be A Force For Change - National Advocacy Conference 2016 run by Kate Mercer Training. I delivered the first keynote speech on my experiences with advocacy, titled “Be Your Client’s Hero”. It was…
Today is World Hospice and Palliative Care Day, celebrating supportive/palliative and hospice care around the world. This year's theme is Living And Dying In Pain: It Doesn't Have To Happen. Palliative care has been a part of my life since April…
Most of you reading this will know my story, my struggles and my successes. I'm not here to recount them to you. However, it's my 23rd birthday today. Big deal, right? I'm only 23. The thing is, it is a…
Most people have heard of feeding tubes, seeing kids with cancer and other illnesses with a NasoGastric Tube taped to their face. People know it’s possible to be fed through a tube in your nose down into your stomach. However,…
Let’s face it, we live our lives online nowadays. We post, tweet, upload photos and videos and update our status whenever we see fit, detailing our lives for our friends and followers to see. We post about what we do,…