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National Poetry Day 2019 - Truth

October 03, 2019

3 October is National poetry day - 2019's theme is Truth. Today, we share a small collection of poetry created by those in our community talking about their every day truth of living with M.E./CFS.

Me behind blinds

Anna has M.E. and wrote this poem when she was bed-bound due to her condition. At one point she went three days without food. Here you can listen to her poem where she talks about her experience of being severely ill - living her life behind her blinds - watching commuters hurry past, unaware of those who cannot do the same. She created this as part of a three-video series about life with M.E. You can find these videos on our YouTube Channel.

This poem was featured in issue 93 of our membership magazine InterAction. Here Rosemary shares her experience of living with M.E./CFS for 35 years, the way that it has been treated by professionals and the shame and judgement that she has felt from the media.


Each morning when I wake

Every part of my body aches

Half my life I've been ill;

35 years and still no pill

To cure it.

The medics still argue about the name

The press pillory it with derogatory shame

The Quacks see it as a gravy train

Yet I still have to endure it.

It's all in your head, the psychiatrists said

"It's all mumbo jumbo, give us your dosh.

We can blame you if you don't rush off

And wonderfully recover".

'Prove it" they said.

Get up from your bed

Fill up this interrogatory document

No benefits for you unless you are dead

Or at least unable to use them.

The powers that be now decree

Cognitive behaviour therapy,

Graded exercise which makes it worse

And I still have to endure it.

It's physiological they now find.

So it's not all in the mind.

Money for correct research was lost,

The patients left to flounder & suffer.

In 35 years, man has been to the moon,

The internet invented but little support for ME.

There will be a cure one day for sure

But, too little, too slow; not in my lifetime.

So each morning when I wake

Every part of my body aches

Half my life I've been ill;

35 years and still no pill

To cure it.

So I endure it.

Rosemary England.

M.E. Friends Online forum user, Snowbelle, wrote the following poem about life with M.E. A 33-year-old healthcare professional, Snowbelle has had M.E. for almost five years. “For most of that time, it has been mild and I was able to work part-time, but for the last five months it has been severe and I have needed increasing amounts of care,” she told us. “The majority of the time I try to focus on the positive, but every now and again it is important to face and process that loss. It also allows us to reconnect with who we are inside, unconstrained by M.E.”

This poem was taken from InterAction 101.

Lady in The Distance

I strain my eyes to see her,

It’s been a while since I looked at her.

She’s so far away and she moves from place-to-place quickly. She moves with ease,

no concerns over whether she’ll manage the journey back, no weighing up routes to minimise steps

or plan what aids she must bring.

She seems so free! Free to do, free to be.

Not necessarily care-free, everyone has cares,

but free...

She goes from one task to the next without a thought...

Washing, dressing, breakfast, travel,

Arriving at work, smiling at those around her, Her body doesn’t wince at noise or light.

She stops at the shop on her return without a thought or a concern

other than what she can cook to bring tonight.

At home, her battery is still not done, she can go out,

have opportunities to meet ’the one’. Yes, one day,

her going out might become staying in, but she won’t mind,

she’ll have little ones to tuck in. She’ll tidy toys and stick on a load,

Before she curls up to rest in her own abode.

Her life seems so distant. You ask, “who is she?”

She, is the me, without M.E. She has much of what I’ve lost,

Though not all of what I’ve gained,

Perhaps, one day, our paths will cross again.