Showing posts from July, 2013

Coach !!

I ran down the garden, jumped on a bench, punched the air yesterday - I had just qualified, after a year's study, as a Life Coach !! Very exciting, although physically limited by caring for my wife, there is no end to the creative ways I can build upon this experience. Wonderful, life changing learning, so overjoyed I completed the course.

Care for Someone with Severe ME (2nd Edition)

Out soon

Loves Last Stand

I am currently undergoing a course in Creative Computing, learning how to use an electronic sketchbook called Processing : .

This is a film of an interactive App I have coded - it sets out to convey the passion of our often lonely stand for truth - we have been fighting for the last 20 years - alongside the horror of Severe ME. As the user clicks and moves the mouse or their finger about, the background pictures change, multi-coloured, rotating  words convey two messages : "This is love's one last stand" and "This is a stand for Severe ME" - above all though that little solitary bobbing head figure will never be extinguished - no matter how much you smear him about, he emerges still nodding, still singing his song; it's  all you can do !! 

The soundtrack plays two songs- if you click the mouse - Loves Last Stand and With ME, just coming in underneath.

The Wall

One of the ways I cope - survive as a carer, is through ongoing learning. But have I overdone it this time ? 

Right now  I have a Life Coaching course to complete - the deadline looms, I have also started a demanding 6 week Creative Programming Course - yesterday, half way through,  the first assignment was  I am working on the revised version of my Severe ME book.

Yesterday was  a day of screaming torment,  for Linda.

As the deadline came and went I was a mess. I could not string together a single line of code. It was an awful place to be - on top of everything else  I badly wanted to give up. But Linda was able to perceive  that I was coming from a victim , not a true authentic position. Her wisdom, courage and encouragement pushed me on and over that concrete wall I had hit.

Incredibly I  was able to sit down and write some basic  code that graphically, dynamically plays one of my songs with swirling, multicoloured words and interactive mouse movements : I am attaching a scr…

We live in an impossible world

We live in an impossible 
normality is beyond us, 
we are tortured by
the simplest interaction
Normal things cause us
pain, deterioration,
risk harming us severely
We need extra help
yet the price of help
is often too high
to pay
We cannot access it
for the people who would 
would hurt us
with their unawareness
and lack of understanding
How can anyone truly understand
how much pain they can
when a whisper
drills into your brain and
sends pain spiders
crawling round your head ?
When any loud noise
is a torture that feels
like you are being hit 
repeatedly with a
sledge hammer.
When banging,thudding,
causes your
guts to go into trembling
jelly spasms too
indescribably horrible to
convey ?
When a simple wiff of perfume,deodorant 
or washing powder leads
you to feel utterly sick,
vomit and give
you a massive instant
headache and intensifies
your body pain unbearably?
How could anyone possibly
understand what it feels like
when a touch, gentle,kind,
loving,feels like
a heavy block of cement
is pressi…