Let Go, Don't Be Mad

One of the greatest challenges brought by m.e. is:

L.E.T.T.I.N.G.G.O.A.N.D.N.O.T.G.E.T.T.I.N.G.M.A.D.

There are so many things that just break your heart in two if you let them...

Things you can't do, people you can't see, aches in your heart you can't fulfill...

I have this one this weekend. Someone I haven't seem for 17 years is in the country for a brief moment. I'm supposed to be driving down tonight to see them..

But I can't.
m.e. has me in her tight grip.

I want to rage, I want to beat myself.

But I have to let go
and not be mad
stay sane
and be my own friend
hold myself
and wrap me up in the tighest of embrace

Love me
Hold me
Be me


Today's song: James Blunt, 'Wisemen'

What do you do when...

...you just lose interest in life..?

haven't wanted to write
haven't wanted to blog
haven't wanted to photograph
haven't wanted to participate

This month has been... awful


I have lost myself.


Today's song: Sia, 'Breathe Me'

Enemy

Thought I would know an enemy a mile off

Thought I'd know instantly who they were

Thought I would stand like a giant to fight against them

Didn't know the enemy could be close
much, much closer than that

a sheep in wolf's clothing
a twisted caretaker

Those that say they love you aren't always telling you the truth.



Today's song: Eels, 'I Need Some Sleep'

Three Ugly Things

Three ugly things:

1. The fact that laughing makes me more ill (and the pain worse).
2. The fact that those who should be my biggest supporters are in fact, my biggest detractors.
3. Being wide awake when I'd rather be fast asleep (5am on a Saturday morning anyone?).

Today's favourite (oh the clothes, the hair!) song: Madonna, 'Dress you up'

Agony

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'

Bed Day Today

Another bed day today.

So, so tired.

All limbs ache; head is heavy; the beginnings of a fever chase my brain.

So, so lacking in energy.

Still under the duvet.

Willing the pain to go away.

Tick tock tick tock.



There but by the grace of God go I.





Today's favourite song: Sting feat. Cheb Mami, 'Desert Rose'

Dark night of the body

Sometimes I'm so close I can almost touch it, that elusive beast 'normality'. That simple little pot of gold at the end of the rainbow... everyday normal health.

But I've overdone it again. I spent too much time talking to a friend, too much time holding my niece, I drove that extra mile in my car..

And I am stopped in my tracks, pain and illness gearing up for their assault.

The fevers appear, cold flannels on my head. The pain surges, out come the pain killers. Insomnia descends, church bells checking the early hours. Energy disappears...

The episodes are getting less frequent, they are lasting for shorter periods, and yet as close as I am to the finish line, I have never felt closer to giving up. I-just-can't-do-this-anymore. I want to cry and cry and cry and rage against the pseudo-dying of my body. And suffer, how I suffer. How I want to be saved from this.

So I wait. I wait however many days it takes to subside. Patience... I need to be patient.

And slowly, surely, the attack ends. I get up again and peek my head back into the world; energy temporarily restored; wondering when the next time will be; hoping there won't be a next time. How I marvel at the sunshine, the opportunities that lie outside my front door. I step outside and embrace life again knowing just how lucky I am to get it back.

And I know that one day, I know, that I will emerge for good, seize the world with both hands and never look back...

Lucky, lucky me xxx

Today's favourite song: Cut Copy 'Lights and Music'

Attack

Three days ago, I was attacked.

Ok, not by a shark!

And not physically either. It was a verbal attack.

The words used against me were particularly vicious. None of them were (or are) true of me. It was a crash between anothers' opinions and beliefs and mine. I actually respect their beliefs. They, it became apparent, do not respect mine.

What matters now is not what happened, but rather, who I became in the time that followed. It was a crucial moment. I asked myself this crucial question:

Where-do-I-go-from-here?

Do I:

a) stay, acquiesce to their demands and deny mine.

or

b) recover, stand firm and choose me.


I chose me.


Today, I woke early, dressed, saw the blue of the sky, picked up my camera and walked.

I walked a long time. I took 100 photos. I breathed. I reminded myself of all the good in me and finally, I hugged a horse, and I went home.

I-chose-me.



Today's favourite song: Snow Patrol 'Set the fire to the third bar'.