The following is a guest blog by Greg Crowhurst about Severe ME. Note August 8th is Severe ME Day.
“I broke the silence on October 12, 2006; that day I believe we were the first to raise awareness on YouTube of the incredibly serious nature of Severe ME.
These days my wife is infinitely more ill than she was then. I am still speaking out, Stonebird, is my platform. That video was the beginning.
Facebook had just been invented, the first tweet had just been sent, there was no such thing as an iPhone, but there were over 100 million websites.
And a pressing need for a ground-breaking Severe ME site.
Most ME websites back then and still today, do not seem to take into account the complex visual, movement, colour and cognitive difficulties, that people with ME can experience. They are often way too wordy or have fast moving or flashing images, painful garish colours and masses of complex information far too long and detailed to follow or hard to find. Site navigation is often dire.
I wanted to build an ME-friendly website.
But first, I had to learn web design!! I took a book out of the library, it seemed hopelessly complicated and impossible to understand.
So, there I was trying to figure out how to build Stonebird. As you can see, eventually I succeeded!
These days I study web design at every opportunity.
My beloved wife is diagnosed with a very severe form of Myalgic Encephalomyelitis that is nothing like the fatigue focused, minimized illness that you will see misrepresented as ME in general today; the idea for Stonebird came from her.
I had literally bought her a stone bird, in a local craft shop to look at when she was most ill and perhaps hold or touch for comfort. She loved its shape and feel, the coolness of the stone, the beauty of the curves. It reminded her of herself, trapped inside her body, but still there was a beauty, a spirit, that is indomitable and intrinsically of value, even when nothing is physically possible. Still your heart can shine.
A passionate belief in the value of each and every person, no matter how ill, how battered, how tormented, how hidden and physically unable, because of ME, was the genesis of Stonebird and is the light that we shine, the battered flag that we hold aloft still.
These days Stonebird is respected around the world, as a valuable resource for people with Severe ME and their carers. Recently I had to update it; Google are heavily pushing for websites to be fully responsive on all web platforms, mobile and desktop; what a steep learning curve!
Web design keeps you on your toes, in terms of continual learning, as does caring for someone with Severe ME. I find I constantly have to grow in awareness of the profound and complex needs of my wife and my responses. I cannot afford to ever get stuck.
After over two decades of caring for Linda, I was thrilled to be shortlisted by the British Journal of Nursing and was one of three finalists for the Nurse of the Year Award 2015. As my gift to people with Severe ME for their support, I created and published a free App, on caring for people with Severe ME, The Moment Approach; it aims to raise awareness of the vital need to understand the illness and the devastating hypersensitivities.
You have to keep dreaming. I wondered could I publish a book unlike any other on ME, illustrate it, format it as a manual, make it carer-centred, make it self-reflective, make it informative, interesting to pick-up and above all make it inspiring ?? After immense effort, Severe ME: Notes for Carers has just been released. I hope it helps.
I vowed long ago I will raise awareness of the awful suffering and isolation of Severe ME, shout it from the rooftops. So I broke the silence, came up fighting.”