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Friday, 27 May 2011

The Dark Sea

Grief is like a dark dense inky sea, a tide of misery.  And like the tide is slave to the moon, the dark sea breaks in ebbs and flows manipulated by an invisible force. 

Some days the sea is calm and non-threatening, just background noise, other days it is raw power, overwhelming, all-consuming.  And it takes every fibre and cell of me to keep from drowning.

Something violently shifted in me a few weeks ago, unmooring me in an internal storm that began suddenly and without warning.  An invisible puppet master blew tornadoes across the dark sea and wrought earthquakes below the seabed causing the water to move ceaselessly in unpredictable patterns and with a ferocity that is chilling.  Now I feel as though I am constantly fighting to keep my head above the water.  

The only escape is fitful sleep.  But when I wake from dreaming, there are mere seconds of disorientation and then a dark wave crashes mercilessly, brutally, soaking me to the bone, and I am dragged into reality.  If I only had to awaken once each day, it would be okay, but as the frost of winter moves in, my body is weakened, and resorts to hibernation so I sleep and waken three times.  Each time I feel the cold splash of reality, I splutter through the freezing water, gasping and fighting my way to some semblance of equilibrium.

You see, I am not the best swimmer.  But I am strong willed.  At the moment, every day is an epic struggle to traverse the inky sea.  And yet I doggie paddle, or float, or just barely hang on to the flotsam and jetsam that are tiny broken pieces of my happy memories, and I get through it.

Hope is my lifesaver.  I see it in the distance, a tiny speck of light.  Sometimes the dark tide drags me too far from hope, and I just have to have faith that it is still there, on a distant shore.

There are moments when it feels as though it would be easier to stop resisting, stop struggling, just let go and sink into the inky darkness.  But no matter how tired, no matter how hopeless, I won’t give in.

I refuse to drown.

Tuesday, 24 May 2011


My life is a slapstick routine. Today I ate a napkin.  By accident obviously, but nonetheless I ingested it.  Then I managed to sustain a dusting injury.  How you ask.  Well who knows?

Once I ate ants.  And I’m allergic.  It was like pepper on my tongue.  I had to watch it for an hour to see if I was going to choke.  I didn’t, it merely swelled enough to impede my ability to speak.

I fell on the cat once.  Well probably more than once, but at this particular time it was after standing in front of the fridge trying to conjure up something to eat when I started to pass out and plonked gracelessly onto the cat.  Like a furry pillow, a not very impressed angry mewling one… but he broke my fall.

Then there’s the time I head butted a door frame.  And there was no prior bull in a china shop impersonation requests.  It just seemed appealing.

Or the time Ma was helping me change sheets and I fell face first on the couch over the armrest, so my feet were up in the air.  She thought I was just having a rest.  Never could understand how that would appear so, odd way to have a rest.

And recently when I had my hands bandaged, the clip caught on something in the fridge disabling me so I was stuck while the fridge door shut on my head.

Oh, and the time I tripped over the cat, into the fridge and when I grabbed the freezer door handle to steady myself it broke in my hand.

And I drop things…. all of the time.  And spill things.  And I miss my mouth.  Oh and I have scratched my face several times when simply trying to move a blanket or get my hair out of my eyes.

Cats and fridges, they’re a problem…and apparently eating, that too.  Perhaps I should refrain from moving at all.

Or I'll just continue practising my slapstick routine until it's perfect.  Then when I'm well I can take it on the road.  Tour dates coming later.  Much later.

Saturday, 21 May 2011


It is unrealised potential, an unfinished story, a broken thought, an incomplete lyric, a blurry image.  There is a wealth of creative potential inside this brain of mine, but I chase fragments trying to form them into one lucid moment, and get lost in the game of hide and go seek.  Brilliant partly formed ideas sit broken in pieces in nooks of my mind, waiting to be discovered and put together to form a beautiful complete puzzle.

I cannot articulate my ideas at the moment.  They stay hidden in the maze of my grey matter, elusive, unyielding, and obtuse.

Hopefully this too will pass, and the joy I get from communicating my heart will return.

Tuesday, 10 May 2011


There are lots of storage containers in my house, vintage wooden boxes, chests, vintage suitcases, vintage trunks, pretty paper bags, pretty shoe boxes. 

The ironic thing is that I am a clutter-bug, a collector of all things vintage and kitsch.  I am very visual and I like to see pretty things artfully arranged everywhere.  So the storage is mostly empty.  Well that’s what I thought, until I realised something.  They’re not.

In every wooden box, trunk, suitcase and chest is a dream or a hope or a wish.  All of them are full, brimming with ideas and creativity.  With hopes for the future, things I’d like to do, to be, to make.

Just stored away for when I can. 

May twelve is Chronic Fatigue Syndrome/ M.E. awareness day.  Please consider supporting our cause by donating to:

And maybe one day I can unpack a box or two.

Saturday, 7 May 2011


When you live with chronic illness you are faced with choices every day.  The most important comes in the morning.  If there was a gauge for emotion with happiness and hope at one end of the spectrum and desolation at the other, you would find that most of us wake closer to the dreary end.  But we choose through sheer willpower to push the needle through the middle ground and as close to the happiness end of the spectrum as we can manage.

One of my sisters suggested the other day that I consider CBT – Cognitive Behaviour Therapy, because I am striving for answers and treatment, rather than just accepting that there are none.  I think she fears I’m wasting time being unhappy with my life when it may never be any more than what it is now, so perhaps I should just concede defeat and be happy with what I have.

I had a few issues with that suggestion, firstly CBT has been found to be detrimental to people with CFS/M.E. often exacerbating our symptoms and causing more damage, and secondly and more importantly I don’t need it.  I’m not unhappy, I’m dissatisfied.  There is a huge difference.  When people make these offhand comments I do wonder how they would feel without their partner, kids, job, house, car, independence and income.  Would they feel satisfied and simply and easily accept this fate?

After spending a decade on forced introversion, there is no emotional stone unturned, no thought or theory unconsidered and no escape from reality.  We don’t have the luxury of denial; every moment of the day is a brutal truth.  I believe my sister simply doesn’t want me to struggle unnecessarily.  But acceptance is one thing, giving up is another.  So although I have learnt to accept this fate, I will never stop hoping that things might be different.

Instead, every day I get up and choose to hope for better days.  I watch the morning sun filter through in shafts onto my balcony making dappled light dance over chairs and imagine waking up and feeling refreshed.  I collect pretty vintage pieces for the moment I may be able to wear them somewhere other than at home.  And in my dreams I play netball in fluid agile movements that feel almost like dancing. 

I will not just resign myself to this fate forever.  CFS is an ever-changing beast and one day some of my dreams may be possible.  Why should I just give up on the idea of having a family, my own little cottage, my first new car, a decent income or a career?  I am not delusional, I am always honest with myself, so I have accepted that I may not ever be a mother, or own a house or car, or have a career, but it’s nice to imagine having those choices.

At the moment I don’t.  But what I do get to decide is whether I am happy, and you know what, mostly I am.  And when I’m not, I hope to be happy the next day.