Dying Matters Awareness Week 2016The Big Conversation We all have wishes, preferences and we know what we want. We make our own choices, we decide what we do and when, we make our own plans for our lives, we choose which…
It’s no secret if you know me that I have a life-limiting/life-threatening form of a condition known as Ehlers-Danlos Syndrome. Sadly, though some people with the condition can lead a normal (or relatively normal) life, for me it has caused…
It's Dying Matters Awareness Week (18-24th May 2015). This year’s theme is Talk, Plan, Live. This is my way of showing support and encouraging people to make plans for when they die. Knowing you will die earlier than normal, for some…
I recently wrote a piece for the Courageous Parents Network about living with a life-limiting/life threatening illness, palliative care, end of life planning and quality of life. It's a brief summary of my journey since becoming ill, the support I've had,…
It’s that time of year again: it’s Christmas time. Where has 2014 gone? It seems like yesterday that mum took the decorations down, and now they’re going to go back up again. Christmas is a difficult time for many people for…
Bev (left), Mum Kate and I22nd November 2014 - I attended The J's Hospice Charity Ball in the role of guest speaker and had a wonderful night. I spoke about my care from The J's and how they have helped…
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…
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…
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…