Welcome to the Lucy's Light blog

Overcoming Obstacles

It is hard to overcome an illness when it imposes so many limitations and treatments/problems demand such a lot of time throughout the day (and night). Some days it seems impossible. I’ve been ill for six years and eight months…

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HANs week, tube feeding, TPN and awareness

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,…

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Update – July 2014

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…

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Dr Daniel Poulter MP, Did You Hear Me?

Dr Daniel Poulter MP, did you hear me? You probably won’t remember me; I gave a speech at an event organised by Together for Short Lives in Parliament in November 2013 which you attended. You had your picture taken with…

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Speech for the Children’s and Young People’s Health Outcomes Forum

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…

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Ehlers-Danlos Syndrome: Are You Aware?

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…

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Deterioration, Acceptance, Determination

Recently, my health has deteriorated again. Last year was a fantastic year despite my health and, though I was poorly, I was relatively stable in some aspects. I pushed myself harder than I thought possible to sit up, building up…

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