ME Awareness Week 2012 [Scream?]

If you've followed this blog for a while, you'll know that both my husband and me suffer from ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome). The thing with ME, is that it covers a vast array of symptoms, and is really an umbrella term for an array of illnesses, with similar symptoms, which haven't been individually identified yet. As such, there is no cure. For the next week, I just want to share some of the main symptoms I experience.

Time to break the silence. Make people aware of ME. Get funding to find a cure. Time to scream.

ME Awareness Week 8 - 14 May 2011

This is my third attempt at writing this post. It's so difficult. How do you write about something which consumes every second of every day, yet noone can really understand? Something that affects everything you do, yet isn't who you are at all?

I am many things in life. I am a wife, a daughter, a sister and an auntie. I am a friend and a relative. I am a Christian. I am an artist, a photographer, a crafter, a crocheter. I am a blogger. And I am an M.E. sufferer.

Look at Me - Go Penguins by ~bicyclegasoline on deviantART

George, aka Look At ME, painted by myself (Helen Morris) as part of Go Penguins by Wild in Art. Bought by Phil Redmond, with proceeeds to ME Research UK, and now on display at the Lady Lever Art Gallery, Wirral.

To the outside world I show my happy face (well, when it appears from behind the camera!) I try my hardest to act confident, to walk, to create, and to exist. But behind the smile, behind closed doors, the truth rears it's ugly head. The hours spent under a duvet, wondering how to get a drink. The days spent with a parent here to get the housework done. The piles of paperwork to fill in to claim benefits, and the tears when you're told you're "fit for work", just because your disability is invisible. The small painting which takes weeks, because you can't always sit up, or lift a paintbrush.

I've suffered from ME for 11 years. My husband fell ill about 6 years ago. We are dependent on each other, and those around us for support to live by ourselves. We're a young, married couple - unable to earn our own living because we're too ill for work; unable to buy a house and start a family; dependent on our families for so much support... And just longing to be well.

ME (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) is a neurological illness, with a wide range of fluctuating symptoms. Some people are able to live an almost normal life, whilst others remain bedbound for years on end. Symptoms include extreme debilitating fatigue - which doesn't ease with rest; aches and pains throughout the body in muscles and joints; recurrent headaches and migraines; sore throats; nausea; sleep problems; cognitive difficulties - aka brain fog - affecting memory and concentration; clumsiness; weakness. There is currently no cure for ME, and biomedical research is lacking. The NHS cuts are causing specialist ME clinics to close down, and there is a lack of funding to help sufferers access complementary therapies, such as homeopathy and osteopathy. ME Awareness Week is about raising awareness of ME, and the consequences it has on individual's lives.