Boxes

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:

http://www.givenow.com.au/mecfsaustralia

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

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.

Identity Theft

Someone stole my identity.  Not just cards and details, but they actually stole me.  And now I’m lost.  You see I’m not who I used to be, nor who I’m meant to be.

When I was a kid I wanted to be a pre-school teacher, I played netball a lot, loved art and writing and then I grew up.  And I played netball a lot, and coached and worked, in admin, usually in fairly high level positions.  I became good friends with all of the staff I worked with, the managers and the directors.  We socialised a lot, I played netball a lot, and I worked hard. 

And then it happened.  Just like losing my wallet. It was that quick.  A thief called CFS AKA M.E. had come in the night and stolen my identity.  I woke up after two years and was no longer me.  I could barely remember my life and certainly couldn’t live it. 

Where there was certainty was now an abyss.  Where there was purpose there was now no need or use.  Where my memories were stored was empty, like a library with all the books checked out.  Where my heart had beaten now was a gaping hole. 

Someone stole my identity.  Someone stole me.

Faith

There was a documentary that aired on SBS Saturday about the Shroud of Turin, to coincide with Easter.  A Professor of Religion and Religious Artefacts was talking about the significance of icons and religious artefacts in centuries past.  That people couldn’t look to medicine, or armies, or politicians in times of grave illness, instead they turned to faith.

It seems archaic, the idea of relying on faith alone to get better.  But when I think about today, and about Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS), although medicine has come so far, we, like them have no concrete answers and faith in that context doesn’t seem such a foreign concept.

It is the ten year anniversary this weekend of my onset of ME.  And I have discovered this week, that in that decade not much has changed in the attitude of medical professionals towards our illness. 

What underscores our ability to survive and cope with this illness against all that condescension and those dismissive attitudes is faith.  Like all those years ago, we don’t have any tangible solution to hold onto.  They had to put their faith in religion, in icons.  Ours has to be in ourselves.  The only way we get through this is to continue to believe in our instincts and our understanding of our bodies.

With no tests or treatments proven to consistently help all people with ME and CFS, with no answers to the infinite questions, the only other option is to trust ourselves.  To have faith in our own judgement, believe in our instincts. 

My faith has been undermined this week, my trust in my judgement tested, but eventually it will come back.  

Traveller

Lately I have been stuck in this place between asleep and awake where I cannot differentiate between dreams and memories, or gossip and plotlines.  I only realise I am finally alert when my heart smarts, my throat closes and tears gather.  The brutality of my reality is too much.   

Sometimes I wonder whether I will ever have clear memories that are my own, not those I have accidentally imported from others, their thoughts and feelings bleeding into my subconscious.  Now and then, when talking, I will go to recall something that has happened recently, only to realise that the memory is in fact the bastard love child of my true memory and several potential alternate world fathers.  I get so confused that my memory infuses the two realities and recalls plot points from storylines as though they were my own.  

So, often, I wish to stay in that other world immersed in the rich, colourful reality of those characters. My world by comparison is bland, black and white with rough, angry, senseless streaks of red.  In the other world, time passing, the morning sun, the darkening night, the day of the week… it is of no consequence.  It is a safe place where I feel anything is still possible.  Here, in this world the merging and passing of time is marked by signposts of grief.  I watch my god-daughter become a young woman and realise that before long she will have left her childhood behind.  I watch my friends get married, fall pregnant, buy houses, start new careers while I am stagnant, in a waking coma.

I am here in my bubble, floating between two realities, an outsider and voyeur of both worlds, but never really a part of either.  In this territory between the two are the soul travellers, the interlopers.  We cannot physically explore the world, so instead we observe, and imagine and hope. 

One day I hope to be a resident somewhere other than this territory; but in the mean time I will take comfort from other soul travellers, share their war stories and feel them walking beside me even though I cannot see them.

My new superpower

I have a superpower - invisibility.  I didn’t choose it.  Given the choice I would’ve chosen flying.  But the universe has bestowed it upon me, to do with what I will.  So far it’s been a nuisance.  I can never get served, in shops and cafes I am unseen, ignored. 

My friends and family often forget me. 

Flying would’ve been so much more fun.

I am not vibrant or loud, so my presence is unnoticed or the invitation forgotten.  Like the elderly or the disabled, I am not valued or considered.

In order to be heard or seen I have to be loud.  Or harangue.  Or fluff myself up like a defensive cat, make myself bigger, more visible.  Invisibility is like a black-hole for self esteem, stripping me down and leaving me vulnerable.  I want to scream and rage against it, but I cannot muster the energy.  Piece by piece, moment by moment, as I have declined invitations, they have declined bothering to ask.  I have explained that the mere extension of the invitation makes me feel included and as though I have some control.  But it falls on deaf ears; my invisibility gets in the way. 

I believe others want to spare me the hurt of awareness of another event I cannot attend, however small.  At least it was that way at the start.  Now they merely forget to remember me.

So the loneliness compounds.  It is as though they are yelling at me that I am no longer who I was; no longer valuable, no longer worth considering.  I am invisible.  And with each accidental or well intended dismissal and exclusion, my invisibility becomes more permanent, my alienation more profound, and my presence more ghostly.

I am invisible.  I wish I could fly.

Attitude v Gratitude

It seems to be a recurring theme, these melodramatic waking moments.  This morning it was a cat playing the hokey pokey on my face and then I realised I was talking, well no, sternly giving someone a talking to.  Apparently the protagonist in my dream was giving a dressing down to a rough looking Mexican man (one can only assume was inspired by the Weeds episode I watched last night) about attitude versus gratitude.  I remember having the fleeting thought that this would be a good story, and thinking I’d remember it when I woke again, which I didn't.

Perhaps my subconscious is trying to tell me something, because this day is pregnant with attitude.  I could easily beat an angsty teenager in the midst of a hormonal shit-storm with my attitude today. 

See things are a little better here, a little worse there.  The supplements have kicked in and now instead of pausing at every second step to travel the stairs, I can manage only two or three pit-stops.  But this week has also delivered sinus torture, locked jaw, migraine style headaches, constant nausea and asthma.  And delightfully, the supplements have lifted the veil of fog that was stopping me from clearly seeing this world.  Stripping away any delusions I had about just how bad things are.

Every time this happens, I’m reckoning around twice or three times a year, I marvel and baffle at the ridiculousness of it all.  Surely I should be grateful for feeling a little better?  But see it’s not a big enough improvement to have any impact other than requiring more self control to stop myself attempting things.  I am not well enough to function, but well enough to see clearly what I would do if I could function.

It’s like a constant mind – fluff.  I know I should have gratitude, but all I can muster is attitude.