19 May 2008

Things I am Grateful For: Part 1

My car.

I had wanted a car so badly. A way to become that little bit more mobile in the darkness that was those first years of m.e. A way to give me back a little of my life and lessen a little of the isolation. With a meagre government income however I could no where near afford one, so I just imagined. But one day, it became real.

And it was thanks to my dear friend.

She had only known me for just over a year. We shared an instant connection but were still getting to know each other when she and her family decided to emigrate to Australia. She offered me her car and in doing so, demonstrated how she already trusted me. Implicitly:

she gave me the car
before I had paid for it,
the night
before she emigrated to Australia
trusted that I would make the monthly payments to her whilst we were half a world apart.

Not only this, she also asked for a price well below its market value. Just for me.

I was immeasurably grateful for her trust in me, and a little under a year later I completed my final payment.

She was (and still is) my angel.

Today's favourite song: Jason Mraz, 'The Remedy'

The Alchemy of Illness

In bed again, with a sore throat and no energy.


Have just cancelled a date with a friend to visit some photograph exhibitions which are only on this week.



In my sadness I reached out and received this message:

A sacred illness is one that educates us and alters us from the inside out, provides experiences and therefore knowledge that we could not possibly achieve in any other way, and aligns us with a life path that is, ultimately, of benefit to ourselves and those around us.

Deena Metzger


What an awesome, thrilling, inspiring message. It is my path! it is my journey!

How grateful I am to be honoured with this sacred illness and all the blessings it brings me.

Today's favourite song: The Organ, 'Memorize the City'

12 May 2008

Poppy and me

My very talented dog-photographer-friend let me go on a dog shoot with her last week. The sitter was Poppy, a golden retriever.

I didn't realise how much fun it could be..

..mostly due to rolling around in the grass trying to find an interesting angle and shot to take! Here are my best shots:

Today's favourite song: Oliver Shanti 'Onon Mweng'

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'

6 May 2008


I came across one of these widget thingys and had a go.

Was horrified to be a snake!! ;-)

Not least because snakes and crocodiles are the animals that really scare me and the ones that always bite me in my dreams (if anyone knows what this means symbolically....do tell!)

You Were a Snake

You have a primal energy that drives you to explore the mysteries of life.

A nearly immortal soul, you'll live a very long life.

Today's favourite song: Beth Orton, 'Central Reservation'

5 May 2008


With hindsight, I am lucky to have grown up with three sisters. At the time I was most unhappy about it, too aware of the lack of space, the niggling and fighting, the jostling for attention. As an adult, I am gratefully aware it, grateful for the many nights spent in conversation, the comforting arms around me in times of trouble and laughing, lots of laughing.

We comprised: big sis, momma sis, myself (dreamy sis) and baby sis. Big sis’ moniker was not a reference to her size, but rather her age. Momma sis received her name long, long before she became an actual momma, due to her the momma-like tendencies she had been born with. Baby sis was (unsurprisingly) the youngest and I, dreamy sis, was called so due to a love of being forever mentally absent (though physically present).

Big sis was considerably older than the rest of us, and was thus viewed with a mixture of unadulterated adoration and awe – she was our Goddess. She existed on a pedestal, and has done ever since. At an age where make-up and boys was a world undiscovered, she would horrify me with tales of a future – my future – that would involve boyfriends and marriage. Aghast, I would argue that my beloved red BMX and climbing trees were all that mattered to me, thank you very much.

Big sis left us just as we were approaching adolescence and life was getting more interesting. She disappeared at an age where I didn't realise that people, certainly not those I loved so intensely, actually died. For the three of us that remained, our childhood innocence also died that day.

We were now three sisters, and rather than cling to each other in the madness that followed, we each clung to our own individual rafts to survive: the pain in each others' eyes was too much to witness and our individual memories of her, much too precious to share, were jealously guarded. The fact that we were simultaneously limping into adolescence with its requisite moodiness and confusion only served to emphasize our separation. We drifted apart on those turbulent seas and only drifted back to each other once adulthood had begun to show its face.

Momma sis has never shed her moniker and, I suspect, never will; actual motherhood has only strengthened the endearing ways in which she continues to mother baby sis and I. As the second oldest she heaved the mantle of 'big' sis onto her small shoulders and tried to lead us towards the light and resurrection from grief; though she herself was blind. Taking on the responsibility was not an easy option – her younger siblings looked to her more and more for a replacement of the 'Goddess' they had lost. She struggled, but ultimately succeeded, and perhaps it was ever meant to be so.

The departure of big sis fell hardest on baby sis. They were not on speaking terms at the time, and the chance to repair the bridge of misunderstanding between them (for that was all it was) was lost forever. Regardless of the comforting words from her remaining sisters, she needed to re build the bridge herself single-handedly. It took many years and her courage in finding her own peace at the tragic timing of events was, and still is, an awesome feat.

Now, as remaining sisters all 'growed-up', I truly recognise the blessings of my sisters' presence and pour gratitude upon it (this, despite the niggling and fighting that has never quite managed to leave us). Though her presence is now ethereal, big sis is still very much the first sister in our quadrangle. Though I don't really know what the afterlife has planned for us, I look forward to the day where we are four once again.

Today's favourite song: Mike Oldfield, 'Crime of Passion'