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.

Choices

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.

Tomorrow

I had wanted it to be different.  But when I awoke it was as though the loneliness was entrenched, set in and my heart echoed endlessly through the emptiness.  I had wanted you gone, so that I might get my rhythm back, the ease of which being alone allows you.  Now that you’re gone anxiety has taken over and the quiet provides no solace, instead it torments me with its lack of anything.

However in this space there is now room for me.  I had been edged out, suppressed. Now that I have unfurled from the small space I had inhabited I feel unsure of myself and weak.  Anxiety reverberates through me, impossible to still.  I will wait it out.

Tomorrow it will be better.

Today is tomorrow.  And the quiet should be solace; the dark should temper the pain.  Instead it torments and yells filling the silent dark and sucking all the air from the room.  I want to embrace life, but how do I hug the nothingness?  I am not anchored in time or space in this moment and when I finally crash from exhaustion I will sleep fitfully only to awaken again in an unknown place, uncertain of where and when I am.  Perhaps even whom. 

Tomorrow it will be better.

There have been a few tomorrows before today and still it did not brighten.  Yesterday’s tomorrow attacked me with cactus needles, like my illness, invisible and yet incredibly painful.  Like a riddle that cannot be solved. 

The day before’s yesterday I was assaulted by the gaudy colours of the supermarket, only as time edged slowly forward my mind moved slowly away and a bubble filled the void between me and the world making it impossible to navigate without falling over and slurring.

Today’s tomorrow was filled with a kitten poo bed, a ceaselessly undulating floor that defied my balance and deafening all consuming migraines.  They have been taunting me for days, overburdening my senses so that each sense now feels taut like an overstretched old rubber band, cracking at the edges, ready to break and fly into the wall should I not keep the correct pressure of control on them.  Even then, the wall beckons.

Tomorrow it will be better.