What is Myalgic Encephalomyelitis (M.E.)
Myalgic Encephalomyelitis (m.e.)
Myalgic Encephalomyelitis (M.E.) is a long-term (chronic), fluctuating, neurological condition that causes symptoms affecting many body systems, more commonly the nervous and immune systems. M.E. affects an estimated 250,000 people in the UK, and around 17 million people worldwide.
People with M.E. experience debilitating pain, fatigue and a range of other symptoms associated with post-exertional malaise, the body and brain’s inability to recover after expending even small amounts of energy.
Not everyone will experience the same symptoms so it's important not to compare someone who has M.E. to another person who has the illness. People with M.E. can vary enormously in their experience of the illness, and also how long their symptoms last. Some make good progress and may recover, while others can remain ill for a number of years and may not get better. Some people find that they don’t go back completely to the way they felt before they became ill, but they do recover sufficiently to lead happy and fulfilling lives. This is similar to many other chronic illnesses.
There are things that you can do to support yourself.
My story
When I was diagnosed with M.E
When CFS/ME pulled the rug from underneath me I was left clinging by my fingertips until they had to let go. I fell with a large and heavy bump and my world as I knew it came crashing down around me. I was left in an emotional turmoil as my feelings and thoughts caught up with my physical body which was almost immobile at this point.
It was difficult. I slept. My eyelids would open, my voice was hardly a whisper, my movements very slight.
For the next few months I spent many days in bed and realised I needed to do something to begin recovery from this massive energy crash which had happened. Hindsight showed me all the signs and symptoms which had been creeping in.
All that year I began to make slow progress as I learned what I could do to regain control of my life and rebuild a new one. Looking at what I couldn’t do wasn’t easy, so much grief and frustration to deal with at the same time, but I needed to acknowledge everything in order to find my many starting points, to be up and about and functioning again.
A dear friend and colleague made the page Positive About M.E for us to see where it would go. I wasn’t strong enough to write or type for many months although Positive About M.E. was a great stepping stone in my life where I shared and still do to this day, my thoughts, experiences and information. I write about how I feel on the day and change any negativity and struggle into positivity and inspiration which I hope will support other people through their tough times.
The page as it is right now is called Positive about me-Uk. A slight play on words and letters. Using capital letters for naming an illness felt like it was giving it power. Power I wanted back. So by changing to lower case kind of gave me an upper hand, which I liked.
Visit the Positive about m.e. face book page
Positive about M.E - how I support
I am no expert or doctor, what I have is real life experience and a support network that can help to work through the symptons that you may be feeling through m.e. This is how I can help:
- Inspiration for your journey to recovery from m.e.
- Keeping positive no matter what symptoms CFS/me graces me with..
