Chronic Intestinal Pseudo ObstructionChronic Intestinal Pseudo Obstruction. Quite a mouthful, huh? Believe me, it's a lot harder to live with than it is to say it. Chronic Intestinal Pseudo Obstruction (abbreviated CIPs or CIPO) is a condition of the digestive tract…
The transition period is a difficult time. Young people have enough going on in their lives, so to be poorly and/or disabled just adds another dimension. Then when you factor in the change from children’s to adult’s services, it’s a…
Earlier this year I went to the BBC studios to do a recorded conversation for The British Library and BBC Radio 4 as part of The Listening Project. It will be archive for many years to come in The British Library. Mum…
Today, Friday 19th September 2014, is Jeans for Genes day. Jeans for Genes is an annual fundraiser for Genetic Disorders UK to change the world for those living with genetic disorders. People pay to wear jeans at school or work…
I remember the day I first used a wheelchair. It was February 2008, and I hated it. I mean I really hated it. I didn’t want anyone to see me, so much so I refused to go out in case…
This week is home artificial nutrition (HANs) week. I have been kept alive by artificial nutrition for 5 years. Initially, it was through enteral nutrition, where a special milk is delivered into the stomach or small bowel via a tube,…
This is a post about my health (be warned, it’s a long one, I’ve tried to trim it down as much as I can) (it’s also a bit graphic, so perhaps don’t read this before/while eating). For better explanations of…
I got an email through from Together for Short Lives yesterday with this letter attached; I'm going to the Department of Health to meet Dr Dan Poulter MP to discuss my care and how things could be improved! He said…
My name is Lucy, I’m 20 years old and I have a life limiting condition. You probably won’t have heard of it, it’s called Ehlers-Danlos Syndrome (EDS). It’s considered rare, but is becoming more prevalent as awareness and understanding of…
We’ve all heard of cancer; the dreaded “C”. While there is still much to learn about cancer, and many lives lost to or affected by it, there are lots of charities to support these people and their families and a…