A Letter To My Mum
Saturday 30th August 2014To my beautiful mum, Thank you so much for all you do. You keep me alive each day physically and mentally, giving up your life to save mine. You gave me life in the beginning, and continue to…
Saturday 30th August 2014To my beautiful mum, Thank you so much for all you do. You keep me alive each day physically and mentally, giving up your life to save mine. You gave me life in the beginning, and continue to…
You cope so well! I couldn’t cope with all that you do. You must be so brave. How do you do it? We’ve all heard it. When you’re ill (or anything adverse happens), people will ask you how you cope with…
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…
Photo credit: GoogleWith the recent death of the fantastic actor and comedian Robin Williams, we seriously need to rethink the way we see mental illness. Though not a sufferer of a mental illness myself, I know the impact having a…
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…
Recently there was a programme on Channel 4 called My Last Summer, about five terminally ill strangers who get together to prepare for the best death possible. We laughed with them, cried with them, watched them deteriorate and watched as…
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…
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…
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…