What if we viewed lived experience as an asset? As an asset of professional, economic,…
It’s Boxing Day, and I’ve made a decision. I am going to start a blog like I have intended on doing for such a long time, but have always thought “when I’m better”. The thing is, I’m not going to get better. I have to work with what little I have, to get the most from life that I can and do everything possible to improve my quality of life.
So here I am. I don’t know who, or how many will read this, but I want to raise awareness, and to give people an understanding of what it is like to live with a life limiting and life threatening illness. The highs and lows, the thoughts and feelings, the limits, and the hope. I want to give others an insight into our lives, and I hope that my words may bring comfort to others in similar situations. I want to raise awareness of my conditions, the struggles we face, and of the amazing strength which lies within all of us.
Five years ago I was fit and well. I was a keen horsewoman, spending every spare moment at the stables, I would think nothing of spending hours out walking the dogs and loved school. But a condition we didn’t know I had was starting to take its toll. The physiotherapy I had been having was not having the desired results and pain became a prominent feature in my life. I starting requiring the use of a wheelchair, became house bound and slowly got used to being disabled. Over the course of the last five years I have deteriorated to a point where I am bed bound, can only sit up in my wheelchair for short periods, cannot eat, am dependent on carers and my mum, and am life limited. My quality of life is very poor, and we can only try to make me comfortable and to try and help me get the most out of life that I can. We’ve had a lot to come to terms with, and we take one day at a time.
I hope to be able to offer comfort and support to others and look forward to reaching out. I have “met” some wonderful people over the years thanks to the Internet and social networking and have read some wonderful blogs, and I hope to be able to do the same.
Welcome to my world.