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
and no alcohol or drugs taken;
so typical of this disease that
robs us even of the joy of solo or social settings of
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
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
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
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
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 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.
"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.
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.
I have left behind someone I need to kiss.
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 out....as 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..... ........
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,
Write your aspirations down.
One or two of them, maybe the deeper ones.
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!
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!