Monday, 23 April 2012

Night and Day Robbery

I wrote this when I saw a post on the M.E. Chat Room  Facebook page about feeling hung-over for no justification, and it so linked into what's happening with me I 'liked it' and wrote this straight away - thanks M. Burton. 

Night and Day Robbery

hang-over mornings
and no alcohol or drugs taken;
so typical of this disease that
robs us even of the joy of solo or social settings of stimulant misuse.
Stolen moments replaced with the hours of down sides alone.
Another morning 'sobering up' to M.E.s painful partnership.

And for those who want more, see this from Mark Cunningham's post further down the M.E,Chat Room wall..... 

You Know You Have CFS/M.E. when . . .
you are cautioned to slow down by your doctor instead of by the police.
you have a choice of two temptations and choosing the one that will get you home earlier.
 you realize that caution is the only thing you care to exercise.
 you Don't worry about avoiding temptation. With CFS, it will avoid you.
 getting lucky means you found your car in the parking lot.
 you're sitting in a rocker and you can't get it started.
 you don't care where your wife goes, just so you don't have to go along.
 when you wake up with that morning-after feeling, and you didn't do anything the night before.
 your Doctor says: "I have good news and bad news -- the good news is that you are not a hypochondriac."
 you know how to spell gastroenterologist, chiropractor, etc.
 you go to make toast and nothing happens. You've plugged in the can opener.
 you say to your wife, "Good morning, Mary"...and her name is Sharon.
 you have to sit down to brush your teeth in the morning.
 when you become exhausted from the effort to blow out the candles on your birthday cake.
 when you forget your twin sister's birthday.
 you realize that you just sprayed spot remover under your arms instead of deodorant.
 you put both contact lenses in the same eye.
 you realize the marriage vows you took about sickness and health meant HIS sickness not YOURS.
 you have to take a nap because chewing your dinner wore you out.
 you have trouble adding single digit numbers.
 you get up to change the TV channel and decide as long as you're up, you might as well go to bed.
 one of the throw pillows on your bed is a hot-water bottle.
 everything that works hurts, and what doesn't hurt doesn't work.
 you reach the toilet, but forgot what you wanted to do.
 you can't finish a conversation, because you don't remember what you were talking about.
 you have CFS when your top three favorite pastimes involve sleep.
 you have to get rid of your dog; he kept trying to drag you to the yard to bury you.
 Medicare states that you're too sick for their coverage.
 everyone is happy to give you a ride because they don't want you behind the wheel.
 a passing funeral procession pauses to see if you need a lift.
 people are constantly putting a mirror under your nose while you nap to see if you're breathing.
 you know "where it's at", but forgot why it's there.
 at 25, your colleagues that are 15+ years your senior and have kids, manage to do more on the weekends than you.
you get the vacuum out because, by golly, today's the day your going to DO SOMETHING, and then you have to lay down and get hubby to put the stupid thing away. Unused.
you don't have to buy books anymore. You simply re-read the books you have because you can't remember what you've already read.
it's hard to be nostalgic when you can't remember anything.
you wear out your pajamas before you do your pantyhose.
you can't remember your children's names. Or your own.
you can crash your computer just by touching it.
you don't call people back because you're not sure they called.
you put the coffee pot in the microwave and your cold coffee cup into the coffee maker.
you call your kids by your pets' names and your pets by your kids' names.
you can't remember any of the funny stupid things you do when you sit down to write them.
you boil the kettle dry three times to get one cup of tea.
you read a note you wrote to yourself to pay a bill, and you wonder who the heck is Bill.
you call the school twice, to let them know your child is at home sick.
you can't disconnect the dishwasher from the kitchen tap, because you didn't turn the water off first to release the pressure.
you read 100 e-mails from your online support group, then realize you're in the trash folder.
you feed the dog twice, because she has learned how to trick you into thinking you forgot.
...................................................................................I have done all of the above.

Me too, Mark, not far off my score!

Sunday, 15 April 2012

A message to you from Paul Maddern and Nicole Fordham-Hodges

Paul Maddern
"If you visit Yorkshire Sculpture Park, make a point of stopping at the chapel to see 'Still' by Jem Finer (yes, of Pogues fame). 700 images taken by a static solar-powered camera of one woodland view. I was filled with trepidation, not being a fan of video-instillation 'art', but this was one of the most memorable experience in a gallery for quite some time. There were points where we all gasped*, and I noticed I wasn't the only one reaching for a tissue. (*Which sounds it was a ticketed event. It's not. It's free and you just drop in and out. There were about 5 of us who stayed the roughly 20-minutes it takes to watch this, including two young children who were spellbound.)

And here's a short extract  [see below] , which doesn't really do the experience justice."

......................and this has reminded me about one of the blessings of having M.E.. that one has to stop, to learn to be satisfied with not doing, with watching out of the window, of seeking nature to look at when one can, and although the energy levels are low, and like a lap top battery unreliable in the length of time one has to function at any sense of 'normal', life should perhaps be seen as a series of photos strung together, and like memory, every-time ones scans through them, they change a little, bringing colours you had not seen before to ones awareness...

.......................and then I stumbled across Nicole Fordham-Hodges's blog and poem today, and had to put it up here, and although it does not fit the video below in subject, 

read the poem, 
and then watch the clip
....all is well.

Notes from The Lodge Café
The man who keeps the empty café steps out
to drink his coffee. Leaving just me
on the veranda
having myself stepped aside from my life.
The radio is still on in the inside
nobody listening to it
- London’s Heart - as if it listens to itself.
Every now and then a song comes on
which someone might pause to:
like that Tom Waits' song
the way the old American sang it last night
not remembering the words
but the colour they came out
the way they span.
I think myself specially blessed
then its gone.
Light slides on and off my hair.
The owner steps back in.
Teaspoons. Birdsong.
I have left behind someone I need to kiss.
                                                            by Nicole Fordham-Hodges

STILL (low res excerpts) from Jem Finer on Vimeo.

Monday, 9 April 2012

No one deserves the ATOS INQUISITION -

I know that we are not supposed to rub dogs noses in their own faeces if they have done it in the wrong place any-more, and I agree, but in the case of Lisa Coleman and the ATOS Inquisition, they are human and they should be taught a lesson; it's their shit and they should live with it stinking their lives we have to put up with it seeping through the textures of our lives and our dignity.

Nobody deserves the Atos Inquisition - but they have their power from a divine edict from our leaders and they can Kill....

Thanks to the miracles of the ATOS INQUISITION people's real disabilities are written off and no longer are real or exist on any Government database, we are all data cured, our impairments written out of history - such is their devilish power; we all have to be productive units or be transported to the ghettos of our actively and discriminated against impoverished lives......

‎"This Government has decided to shoot its wounded....." too true as we told we can not afford even the smallest human dignity to disabled people.......
The Artist Taxi Driver - lots of F**k**g swearing, but are the Paralympians HAPPY with ATOS (who KILLS) sponsoring their little games 'cos they are OK thank you, while others with complex chronic conditions or with cancer are denied their welfare just because they could get to the ATOS Inquisition interviews..... ........
listen up...or are you too nervous already?

Saturday, 7 April 2012

I’ll tell you about M.E.

I read this for the first time on Wednesday at Wicked Words open mike night - (well it was an open floor night as the mike was OS). It got across, and I had many compliments from those I respect after the show. Took over 3 days to recover from the night, and if ANY one shares their feelings of tiredness with me when I mention that I am tired and having a low function day....don't please (unless you have M.E or have a young child and have not had a full nights sleep for 2 years); this is not a tiredness competition, it's my life I am squeezing out of a spent tube.......  

In the Poem below note the spelling of tares, as with my dyslexia I spelt the word as TEARS and not spotted it until I read it out ………now that is part of the truth….tears are words from the soul. 

I’ll tell you about M.E.

I’ll tell you about M.E.
Write down your dreams, your aspirations, on a sheet of paper,
Done it?
Write your aspirations down.
One or two of them, maybe the deeper ones.
Done it?
Now tear it up, tear up the sheet of paper with your aspirations written down on,
Tare the sheet of paper into tiny pieces and throw them to the floor.
Commit littering where you are now, don’t hold back!
Done it?
Do this every day, every hour, in the street, in your seat, in your car, in your kitchen, in your bed, do it where you stand, where you cook, where you think, at the work desk, on your computer..
Not just mentally but in this physical representation of your personal dreams for a future.
This is the process of M.E.
Torn dreams, aching limbs, and an exhaustion that strips you of your souls desires, strips you of your simplest objectives in life,
Tares even the thoughts you are having at a moment in time,
Tares the conversations from your mouth as you are trying to have them, Tares them into shreds.
So you make your dreams smaller,
I’ve read the books, done the Cognitive Behaviour Therapy ‘patient sufferers’ course.
You make your aspirations easier to achieve,
To go and post a letter
To read the next few pages of a novel
To say hello to a friend…
………And I can see you have not got it..
Go on, write these smaller dreams down on a new piece of paper
Now tear them up throw them to the wind, these simpler dreams,
Do this every hour; train your mind to accept this
To accept that even the shadows of your deepest dreams are torn to shreds,
Rendered into a fatty deposit that sinks to the bottom of the latrine of your aspirations.
That there is around you the smell of festered and decomposing dreams……
Your life is not broken, it is torn over and over and over again,
Thrown as confetti the day you became shotgun wedded to this disease
And you now find these torn pieces hidden in the clothing of your personality, the folds of you character
Turning up as decapitated words and scrambled torn individual letters
On thousands of pieces of torn sheets of paper;
Shards spirited away by unseen underground rivers of illness
And I see you might be getting it.
The enormity of this incurable disease that cheats on the body, steals the mind and toils the soul….
So now that you are working it out,
write these thoughts down on a sheet of paper
and tear them up to smaller pieces and send these to your friends
I have no need of them, I have too many of them of my own.

I asked for some comments from 'The M.E. Chat Room' on Facebook, and here are some; Thanks all and 5 likes!
  • Katie Godfrey Good descriptive piece, liking the way you've put this across.
  • Jeff Baker Thank you. That may sound odd, but thank you for writing this. I just read this out to my missus and its helped her understand some of the things I couldnt find the words to explain.
    Really good work, it's well written and hits the nail on the head as a descriptive
  • Donna O'Donnell your words are softly brutal and very true