Today – May 25th – is a global day of protest for M.E and CFS patients. It is organised through MEAction and what’s happening can be found here: http://millionsmissing.meaction.net/. Actions are planned in several major cities and activists have been sending shoes so we can show our empty places in the world. I haven’t had the money to send mine to the organisers, but here is a picture of my lovely new Adidas originals on my doorstep pretending to go out in the world and have a life on the outside. I think they are going to last me a long time, I’m mostly indoors now, and barefoot is more comfortable laying down.
Personally I’m missing from my life as someone who was good at her job, had ambitions of developing skills in design and marketing and wanted to do something about the words running around in my head. I’ve had the opening of a horror novel set in a remote area of rural Norway running around in my head for a while. It won’t leave me alone, and I will write it but I think it might take me a few years.
I’m also missing as a friend. My friends do understand that being with them is to draining. I’ve lost friends, it’s difficult to stay in touch with a person who is never there and I’m admittedly difficult to stay in touch with. I’m missing as a family member. Last Christmas was celebrated in my pyjamas with just my mother present. It was nice, but not the way it’s supposed to be. I’m missing as a daughter, my mum has to help me with everything and it should be the other way around. She should be able to enjoy her retirement and not having to worry about her 41 year old daughter. Sometimes I’m glad my dad isn’t alive to see me like this – it would have broken his heart I think – and sometimes all I want is my daddy to come and make it better.
I’m missing from all the things I love to do. I love to be outside. I love hiking and swimming and being in the mountains. I love travelling and seeing new places. I’m missing from all the new things I had yet to discover. I missed out on doing the physical work on my renovation project myself. I’m missing from having a boyfriend, I find it hard to really get to know someone online and that is probably the only way it will happen now. I’m missing having a dog or two. I grew up with dogs, and I think daily about getting one again but without a yard to let it out in it seems impossible.
This is what this stupid disease is taking away from me and all the people who love and care about me. There are an estimated 17 million people with M.E worldwide. Do you know someone who is missing?