NB (post post, pardon the pun) Wow big question – bigger than I expected when I started writing.
I’ve had ME since I was 10, I’m now 27 and that means I’ve been ill longer than I ever was healthy – in fact I can’t even remember what it feels like to be well and full of energy and that’s a scary thought. Living with constant illness and being separated from the world has meant that the question “What do you want to be remembered for?” has often played on my mind. I don’t want to waste my life and I know I could spend years waiting to get better for my life to really begin; but I came to the realisation at around 16 that this just wasn’t going to happen – if anything I was getting dramatically worse until I was too ill to speak or move let alone do anything. It was completely terrifying; but I didn’t want to give up, I wanted more from life and I was determined to find a way to get it. I decided if I had to go through these horrific things then I would use that experience and share it with others going through it – so they might learn from my situation.
I was bedbound – I’m now fairly housebound; but I’ve found that if you want to do something there are ways and means.
I dictated a book on living with chronic illness which is now free and online at. I put together all the tips and ideas I had on coping with daily life, a struggle which is going on right now in millions of homes around the world. www.survivingsevereme.com
I also put together a site of recipes for people with swallowing problems because I was so sick of baby food and yoghurt. Contacting chefs and friends to get their delicious recipes for soups, stews, smoothies and desserts – anything that was easy to swallow – hence the name. www.easytoswallow.co.uk
Now my latest challenge is to set up Holidays From Home to provide virtual experiences for people who can’t travel – be it due to disability/health, advancing years, financial or environmental reasons. www.holidaysfromhome.co.uk
I guess I want to be remembered for the things I’ve done. I want to make a mark on the world and to leave it a slightly better place. I want to know that if I use my experiences of illness and disability that I can maybe save somebody else from a little of that suffering then it makes going through it easier and less a waste of a life.
Then there’s all the other stuff, the things about me as a person. I want to be remembered as a good person, kind, warm and supportive. A good friend and family member – there in a pinch during crisis and drama. Willing to offer an open ear and a shoulder to cry – an agony aunt of sorts. Funny – if at times a bit sarcastic and bitchy. I’d like people to remember that I spent time making Christmas presents and when well enough I could cook a delicious cake (chocolate’s my favourite). I was a good hostess who threw amazing parties and who loved being with people she loved.
These are things I try to be – I may not always hit the mark; but it’s who I want to be remembered for – it’s a life in progress.