11 May 2008


Ah yes, agony, I know it well.

Far too well.

I recently had a piercing done. It was painful, but it gave me a moment to experience a 'different' pain to the one I am constantly in - it was a blissful experience.

The pain I suffer runs on a spectrum from say, 0-10. I am never at zero, and too often at 10.

Last night it reached 100.

I literally did writhe in agony. How could my body, the only one I have, feel so utterly, utterly dreadful. How it could betray me so much?! With wet towels wrapping my head, I sat in front of a cold fan just to try and reduce the fever. All. Night. Long. And that was only one part of it.

The difficulty? This is my silent pain. Why not talk about it? Because:

"Are you in pain flower"?

"Yes I am * [delete as applicable: friend/sister/parent/lover].

You might as well ask me if I breathe and if my heart beats.. the answer would always be the same. Do I continue having this conversation going into my 5th year of pain??! I choose not to.

The downside? People think I'm ok when I'm not.

The upside? If I told them the truth they'd be sick to death of me and the pain, plus, I get to be me (m.e.-less) now and again..

It's a difficult balance: sometimes I like that people can see me as 'me', sometimes I want to scream at them..'do you know how much I'm suffering?!
But I think I do ok.

Pain killers lesson the effect. They're like cotton wool that takes off the edges. I couldn't be without them. I have to have something, something to lessen the agony. I don't want to take so many. But I don't want to constantly suffer either.

I do wonder what a pain free body is like, I really can't remember it. What is it like to have a body that feels, well, normal?? After all, I did used to have one! I don't know, but I do know that
I am striving for it every second. And I will know, again.

Today's favourite song: Frou Frou, 'Let Go'

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