Come to bed with ME

Greg Crowhurst 02/05/09

(may be reposted)

“Come to bed with me – and you might never leave..” Joss Morton’s extraordinarily powerful award-winning ME Awareness Week 2009 poster for ME Free for All, is on my mind, and I am sitting and my wife is collapsed at my feet, her head on my knees and I am touching her hair and she is sobbing and sobbing in tender soreness and it’s a Friday night.

If only the throbbing pain in her head would go, if only she could feel the left side of her face, if only her body was not numb and expanding , contracting, flowing and screaming, if only I knew what to do, if only I had something up my sleeve that might help. Something that I’d read, something about a B12 or a Magnesium injection for example. Why haven’t I read something new recently ?

I’m stuck.

I wrack my brains. Got to do, got to say, got to be creative, this one more time; her tears, her suffering, our helplessness, this gross injustice, that social oppression. My anger.

I mean, what would you do, say, think, feel ? What would you do, say, think, feel after 16 years of this ? I mean what exactly would you do now ?

I would like to know if anyone from NICE sitting here would still describe their guideline as the “Gold Standard” .

My anger, as a husband, as a man; my anger at this shattered existence my anger that we lost the JR and now things are that much worse, my anger that I just feel so absolutely excluded from everyone and everything.

Of course I could rant and rave on ME forums , of course I can post lots of videos, of course I can churn out these frustrating articles I write , six to the dozen. Who am I fooling ?

Of course we all like to think its getting us somewhere. You try to fight back.

Except on Monday, Tuesday, Wednesday, Thursday, Friday, Saturday, Sunday nights , days, like these, you have a sneaking suspicion that you are terribly on your own, you know.

Who’s supposedly out there, right now, this minute, making a difference ?

I turn to the lonely wall and I am thinking to myself, when are the campaign groups going to face-up to the fact that whatever we throw at the AfME’s, the Psyches, the NICE’s, the Judicial Reviews, the UNUM’s , they just absorb with a great big belly laugh. Rant and rave all you like on the internet and they agree with you, with a sly twinkle. Your concerns, your outrage, your petitions they will even sign up to, while slapping you on the back, with a dagger in their hand.

And what are they going to do about it ?

But what do I know ? The truth ?

The truth is love. I love my wife now more than ever and I will hold her always safe in my love ; love gets us through any number of Friday nights like this and we will soar and rise above this disease, for we are much greater than it, I shriek inside.

Come to bed with me in agony.