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Showing posts from August, 2015

Three reasons why Labour's hands are red with the blood of the disabled and the sick.

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Will Jeremy Corbyn apologise for the pogrom it unleashed while in power,  culminating in yesterday's announcement that nearly 90 people a month are dying after being declared fit for work ?
Corbyn has called for Iain Duncan Smith's resignation.Yet the Orwellian chain of events that led to yesterday's tragic announcement was devised and set in place by Labour.
Here are three reasons why Labour's hands are stained red:
1. It was Labour that introduced the Work Capability Assessment
Before the Coalition and the current Conservative government came to power seriously ill and disabled people , found fit for work under Labour were denied Employment Support Allowance (ESA) and then subsequently written off, just left to cope with greatly reduced benefits on Job Seekers Allowance and little support. (Source : Not Working . CAB Evidence on the WCA.)
That is because they had all been subjected to the notorious Work Capability Assessment (WCA) which took little account of va…

ME : The Boss Battle

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I am not a player, but I believe the last stage of a computer game is often referred to as the "Boss" battle; we are talking  the  ultimate encounter.

Is that where we are in ME ? Oh yes, there is talk in the air !

According to the MEAction Network,for example, a new network,  writing in the latest edition of The ME Global Chronicle : "We're in a moment of highest attention and media coverage of ME/CFS since XMRV".(Brea 2015)

Hang on ! What exactly does "ME/CFS" mean ? In my book it means "ME/not-ME"......

It means, we are all over the place !

It means : "you win, because we haven't a clue who or what we are fighting for !"

I loved "24". How would  Jack Bauer, the hero,  fare if he had no idea who he was working for or for what ?

"Oh I'm with the  CTU/not-the CTU" !! (Counter Terrorism Unit).

How will the likes of us make any progress all the time our  agenda is just as confused and split ?

The same ma…

This is Severe ME, by Merryn Crofts​

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Thank you so much to Merryn for
permission to post her immensely powerful
description of what it like to have Severe ME .

Please, as Merryn says :
 "SPREAD AWARENESS AND REMEMBER ALL OF US AND ALL OF THOSE WHO HAVE LOST THEIR LIVES."


 "Having severe ME, is like being trapped in your own body every single day. There is no rest, you are bedbound all day every day.

 It snatches the most simple things away from you like being able to wash yourself, even in bed. Being cared for in every way possible. In terrible pain, from everything. Not being able to talk on the phone or have visitors, and feeling worse about saying no everytime someone asks again.

Months and months in hospital.

Severe infections. Breathing problems. Low immunity. Problems anywhere and everywhere in the body. Paralysis. Severe hypersensitivity. The list is endless, and if I was physically able to type I would carry on. Spread awareness and remember all of us and all of those who have lost their lives.&qu…

The suffering, long beyond words.

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How can I convey the sufferingWhich has long been beyond wordsAs each year takes it tollMoment by agonising momentLiving in a totally invisible pain filled realityThat no one seesFew recogniseAnd fewer grasp the meaning?How far the world feels from meEven when I lie,With 6 inches of brickBetween me and the outside streetWhere people pass by and chatterAnd walkExchange gossip,Stoke dogsWear perfumeAnd bright frivolous clothesEnjoy the sunWalk on their wayDrive in their carsOr rev their engines much too loudInteract and feel happy

This is Severe Myalgic Encephalomyelitis Understanding and Remembrance Day.

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This is a day to really focus on the reality of the most severely affected who are in constant agony, tormented by complex hypersensitivities, completely isolated from the normal things of the world. It is a day to remember, with love and respect, the horrendous suffering and loss of life of so many dear friends and fellow sufferers. It is to hold all in love and kindness and be inspired to make change happen. How long do we have to endure such torment, without hope of proper recognition, understanding, clinical support and kindness? How long will we be misinterpreted, misrepresented, mistreated or given no treatment for our serious severe symptoms? How many more people have to suffer ignorance and death?

Severe ME Day 2015

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The 25% Group have announced that the theme for Severe ME Day, Aug 8  2015 is :  "raising awareness of the home care needs of people with severe M.E."

http://www.25megroup.org/campaigning_Severe_ME_Day.html

"This decision has been take in view of the truly dreadful service responses that members increasingly report encountering from social services, when it comes to assessing their home care needs and the type of service required. "

ME : Your Worse Nightmare

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I want you to think
of the worst illness
you have ever had
Remember how dreadfully ill
you felt
How everything you normally did
suddenly became totally unmanageable
Perhaps your head hurt so bad
that you had to lay in bed all day to cope
Perhaps you felt or were utterly sick
and food made you feel even worse
Perhaps you were dizzy ,off balance
 and disorientated
so that you had to sit or lie down
or fall over
Perhaps you had an operation and
felt  weak, groggy and sore.
You must have felt out of synch with the world
and unable to participate in it
 like you  normally would
Now I want you to add pain
Pain that spreads all over your body
Not just one sort of pain
but pain that throbs ,
pain that burns, pain that itches
and screams at you
pain that crawls up your skin
and invades every millimetre of your body:
Your nose, your eyebrows,
your eyeballs,your ears, your scalp,
your neck, your front,
your back,your toes,
even the soles of your feet
Everything expanding and
contracting in agon…