Thank you Sonia

A friend of mine, the lovely Sarah-Louise Jordan, has written this beautiful poem in thanks, to Sonia Poulton, a journalist at the Daily Mail who has written another fantastic article on M.E.

Nobody heard our voices in the shadows
Or saw the flare we sent into the skies,
They didn't see the ground beneath us vanish,
They turned the truth we told them into lies

We lost the strength to dance, except in spirit,
We lost the strength to sing, except in thought,
We had to learn to make hope out of nothing,
In spite of all the monsters that we fought

But on the lonely road we met each other,
Our love and friendship kept our dreams alight,
We found a way to laugh and in the darkness
The stars of our compassion filled the night

And then you joined us in our epic battle,
You heard our voices and you saw that flare,
Because of you the sun will bring the morning,
Our day will come at last, because you care

I can relate easily to the poem. When you have M.E., you lose everything, but because you look just like everybody else, very few people actually realise it. Your energy is sapped as if by some invisible force. You may become sensitive to sound; you can't listen to music or sing. No one knows what causes M.E.. No one has a treatment for us. It feels as if we're locked away in a cupboard none of the medical community want to mention. So when someone comes along and opens the door to that cupboard it feels amazing.

Sonia actually says in her article:

"The over-riding message I have received has been one of gratitude. I can tell you that this is something of an unusual experience for a journalist writing for national newspapers. [..] Many of these voices – including some of the greatest scientific, legal and academic minds in the ME world – have echoed a collective sigh to see their illness validated in the media."

She gets it. She totally gets it. She describes the exhaustion and pain, the horrible treatments we're expected to accept despite them making us three times worse. She understands how we feel we've been forced to live in denial. She knows that we can die from M.E., and that people with M.E. are aware of this despite our doctors seeming not to be. And she recognises the frustrations of the misinformation that seems to be everywhere.

I don't know what triggered Sonia's interest in M.E., but she really does understand. Please have a read:

ME is no more 'in the mind' than Multiple Sclerosis. When is the world going to get that?