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"...a despicable, pointless, all-encompassing waste" - HuffPost

worldbackwards

Senior Member
Messages
2,051
This popped up on the ME Association website today. It's always nice to read a good piece that pins it down, however many times I may have done so before. Particularly splendid in how it nails lazy media tropes (although ironically committing one itself by appearing in the 'lifestyle' section, rather than the 'horrible diseases that will ruin your life' section, which is sadly neglected).
...Yet as regards to the media's representation of M.E I regret to say that nothing has changed. Nothing whatsoever. It remains two-dimensional and stalled on the starting grid with either a worthy article that amounts to the same basic facts and stats cribbed from the M.E Association or features a girl called Rachel looking exaggeratedly sad in a darkened bedroom because she can't ride her horses anymore.

It may seem like I have something against Rachel. I don't of course. I've been there myself in a darkened bedroom, feeling like death warmed up, while elsewhere people with a quarter of your intelligence, verve, and drive whisper that you're lazy or cuckoo.
It's awful and almost Victorian in its ignorant callousness.
http://www.huffingtonpost.co.uk/stephen-tudor/me-awareness_b_6532402.html?utm_hp_ref=uk-health
 

mgk

Senior Member
Messages
155
the poem by J eyre - in the comments . Is really good too
That broke my heart into pieces. My condition isn't at that level, but I feel for you all, and wish you strength and the best of health. Copying it here in case it goes down:
I’ll tell you about M.E. – M.E. stage #4

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,
Tear 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,
An exhaustion that strips you of your soul’s desires,
Strips you of your simplest objectives in life,
Tears even the thoughts you are having at a moment in time,
Tears the conversations from your mouth as you are trying to have them,
Tears 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 have a shower, to walk two extra steps,
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 your 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 another sheet of paper
Tear these up to smaller pieces and send these to your friends.
I have no need of them; I have too many tears (or is that tears)
Of my own.

Jonathan Eyre 20012
 
Messages
1,082
Location
UK
That broke my heart into pieces. My condition isn't at that level, but I feel for you all, and wish you strength and the best of health. Copying it here in case it goes down:

Thanks so much for posting that poem, i couldnt access the comments on the article.

It broke my heart reading it. There aren't enough trees on the planet to enable us all to write down our lost dreams :(
 

Antares in NYC

Senior Member
Messages
582
Location
USA
That quote makes me think of one of my favorite people on the internet. I don't really know her, I just follow her work. She posts about her health problems on twitter. She runs her own business and helps other people start and run their own businesses, and does it all while dealing with this illness. She's a huge inspiration to me.
Let me tell you from experience, trying to hold a full time position with ME/CFS is terrible, a constant struggle against your own body and brain-fogged mind. You are always trying to keep the balance and avoid pushing things so you don't end up in a crash.
That broke my heart into pieces. My condition isn't at that level, but I feel for you all, and wish you strength and the best of health. Copying it here in case it goes down:
Heartbreaking indeed. So true it hurts.