#Millionsmissing

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.

FullSizeRender

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?

International ME awareness day

Today is the International ME Awareness day, and May is ME awareness month. One of my goals is to be more active in the patient community, but I often find it difficult to formulate and get across my opinions and even factual information the way I want it to sound. I lurk on forums and blogs because I find it difficult to write something I want to share fast enough (yes I know, other people wont feel that way). I’ve written before on how difficult information gathering and fact checking are now.

symptom-cloud

It’s a difficult illness to live with. I got sick with a series of infections in 2008 including swine flu and pneumonia, and unlike any other time I have been sick I just didn’t get better again. I managed to slowly get back to work almost full time again but that meant working at least two days a week from home, and not having any social life. I stopped pacing my activities so rigidly and when I got a new series of infections a year ago my ME flared something awful.

Right now I’m somewhere in between moderate and severe which means I’m mostly housebound. I manage to sit up during the day, but I’m in bed at least 14-16 hours a day and doing simple things like vacuuming makes me exhausted and in pain (I did that today, and had a blood sugar crash, wohoo).

7783da43719ac55f970d427a0e963aa8

I still feel lucky though. About 25% of ME sufferers are severe/very severe, and what they have to go through is something I wouldn’t wish on anyone. I also think a lot about young people with ME. At least I got to do all the stuff young people are supposed to do before I got sick.

There is biomedical research under way that holds hope for finding illness mechanism and even treatment options. The internet community is organising, and soon or later we will manage to shame the people that sits on the funding enough to pay up.