Change

Change use to be my bag. I used to thrive on it. It was exciting and imbued with endless possibilities. It probably started from my childhood, we moved every couple of years when I was a kid, we used to buy or build and then we'd move. Most of the houses – something like seventeen – were in Ferny Grove. The furthest we went, apart from a few years at McDowell before there was even a roundabout (oh that horrendous roundabout) was Toowoomba for six months, well that was a weird trek into a parallel universe. They put all the new kids (including my little sister Rhiannon who was in grade one, I was in grade three) in the new class room with the new teacher. We were segregated from the Toowoomba kids.

One bonus was I did year five work and she did year three work. But it was a strange place for us – no offence to those of you that come from there it's a beautiful country town but it's not so welcoming for newcomers, or at least it wasn't – so we moved back to our old stomping ground.

And I went to Ferny Grove pre-school, Primary School and High School. But we continued the tradition of moving house frequently. And I liked it. Then when I started working as soon as was legal, fourteen and three quarters I got jobs, starting at the horridly unprofessional Snow Deli at Brookside where they were incredibly unhygenic and frequently shorted me or overpaid me. Stupidly I was honest and would tell them (they would make me work it off, rather than taking the over-payment back, keeping in mind in those days it was cash in an envelope pay), then when they under paid me I'd have to get my Mum in to argue with them and look through their books to prove they'd fucked up. I was already smarter then their manager at fourteen. So it inspired a series of jobs, and at one stage I worked three. Full time at Mountain Designs head office Monday to Friday, Thursday night and Saturday at Woolworths Stafford Deli and Friday nights and Sundays at the Ferny Grove Bowls Club. Plus when I could the private boxes at the football – union or league – as the bar attendant serving lovely plumbers and tradies or asshat lawyers and barristers who were always the most problematic.

I then moved into temp work and loved that too, it fulfilled my need for change and my love of meeting people and I was very comfortable with learning new things I was intelligent enough that I quickly adapted to new environments and became friends with staff. I became a favourite of many companies because of my ability to seamlessly transition into their teams.

Then I worked the longest period I ever worked anywhere – four years at Education Queensland – and ironically had just started a job with the Human Resources Rehabilitation Unit as an Executive Assistant when I got sick, very, very sick. And I tried to return to work, but I kept falling asleep and falling over. And I was young and I was naïve. A woman I used to work with saw immediately what I had, she told me her brother was sick just like me. He had Chronic Fatigue Syndrome. And pretty quickly I was diagnosed with it. Thankfully because that doctor saved my life. I lost my job because I was a casual, which isn't right and wasn't right. My old boss and dear friend went to bat for me. I should never have been casual. They should have made me a permanent employee by then. But the new director of HR had in for me. She really didn't like me and frankly in retrospect I didn't give her much reason to. I was too sick to work, and yet I would go out drinking. I did it because after spending six months as a saint doing everything right, eating barely anything, restricting my diet, resting and working barely existing, I didn't get any better. And when I drank it gave me false energy and for that time I felt normal. I was such a gregarious and outgoing creature. I had worked full time, played netball up to seven days a week, spent lunches with friends every day and always had weekends full of plans. Then bam, nothing. Four walls, revolting food, endless torture and no escape. So I drank. And she heard about it amongst other things I did that were not indicative of a sick person. But I was a kid. And I had lost my world to a torturous illness. I couldn't deal. I sent out mixed messages and I confused people.

Anyway.... that's that. So this incredibly gregarious, outgoing, young woman with extensive and varied social circles was suddenly slammed shut into a box back when the internet was a major luxury and people just didn't really call you. I lost myself. I self sabotaged. And then I would be good and nothing would improve, giving me no incentive not to find at least some happiness in company while drinking instead of the stark isolation I had been locked into. It was and is the most soul destroying and hope crushing world to be trapped in.

It has changed me. I am not who I was. I used to have parties to celebrate my birthdays, populated by seventy or more very close friends and they were legitimately close friends.  I was very good at maintaining friendships. Now the limit is no more than two to three people – talking very softly one at a time – or I go into the foetal position shaking and sobbing hysterically because it feels as though my head is being stabbed repeatedly by knives. I lost the ability to maintain friendships with people I had known and loved my whole life, because I couldn't even look after myself. They thought we just grew apart when really they just grew away from me and I never saw them again. They stopped reaching out. And although I still felt exactly the same adoration about them, I simply could not reach out. I became invisible, translucent and weightless. A non entity.

So time stopped then for me. Every thing since has been grey with occasional slashes of colour. Garish reds or the very rare dash of blue with beautiful dots of sunshiny golden yellow.

Now I am me. A shell of she. I shiver and shake at the idea of change. I get overwhelmed with the thought of it all. I used to thrive on it. I loved it. Now it is so complicated. My parents are poor age pensioners. They are my carers. And they're both sick. I am a disability pensioner and I cannot even get myself in or out of bed alone any more. We suddenly have to move house. And it's not like the adventures of my youth, I am a cowering mess. There is still a steel will but it is weakened and cracked.

On the weekend my sister Rhiannon and my friend Fiona came to help pack and I barely helped, I could do much except direct really. And yet by dusk I was projectile vomiting, with gastro, clammy with chest pains and unable to walk, my head exploding with a mitochondrial migraine.

Change. We have to move after just under two years and I'm not even fully unpacked. The house we loved just fell through. We don't have bond. We can't afford movers. We have nowhere to go. We can't afford double rent in case we do find the right place (dual living, hi-set, pet friendly) too early. The owners are likely to be asshats and refuse release our bond even though we've done everything right,  They're simply that way. The roof leaks, the lights short out, there's no insulation so we have ridiculous electricity bills because I cannot moderate my body temperature (they promised to drop the rent as we pay way over market price  due to the urgency of finding a house to move into, and predictably they then reneged their offer), there were no curtains or rods … I had to do everything to adjust this house to make it safe for me and now we have to move. And I can't work out the how of it.

We will. I will. I'll find that girl I used to be and wrench her out and try to make use of her for the small things. I can't do the big things. I'm too busy trying not to die. But I can summon her up for the little things. The bond loan. A charity loan. Commandeering volunteers. Something.

Please just pray for me, send me good vibes, meditate on good health and a beautiful change, do whatever you can to send out love into the universe for me and my parents. Because we've been through enough. And it shouldn't be so hard all the time. I need a break from the torture.

Help me wrench her from the shell. Help me please? Help us. We need it.

And thank you. For being in my life For hearing and seeing me. For loving me. For your unconditional unwavering friendships – especially those forged online in sickness, in the dark – you are the best of me. And I love you all xxx

My twisted faerie tale - normalcy

You never know what expectations you  have about life until they are not met. I was never a girl who had wedding dates, locations, dresses or honeymoon destinations picked out. Nor did I have a set age by which I expected to be married and have kids.  But as I approach 37 I find for the first time a sense of overwhelming panic enveloping me in the most unexpected moments, catching my breath and bringing tears to my eyes.

I may not  have expected a faerie tale, but I certainly didn't expect hell either.  If I am honest I imagined a love deep and soulful, where I was with my best friend, and we talked on intellectual and emotional subjects and had similar senses of humour.  We worked as a team to achieve things, no matter how big or small.  Instead I was with my best friend and everything that was our friendship slowly got lost as his very traditional parents whispered in his ear about my inability to work and how that made me a less valuable human being.  My illness progressed and in retrospect I have realised that he often relied on emotional manipulation or guilt tripping me into doing things that I wasn't up to (he simply couldn't understand my illness) and because there was a familiar underlying dynamic he was inadvertently pushing all the right buttons.  That pushing caused my illness to escalate and it made our relationship crumble.  But we had the most beautiful and amicable of break ups because of that foundation of friendship.  What I didn't know then was that while we were parting because he couldn't cope with my illness, what he really meant was he couldn't even manage to be a friend to me while so ill at all.  Ever again.

I imagined kids always, it was obvious to anyone that I had an innate calling to motherhood.   I had a miscarriage in my mid twenties, so that was stolen from me, but in some ways I am thankful because the type of mother I want to be would never have a child and potentially pass on an infection (that I didn't know I had then) nor would she bring a child into a world where she couldn't look after herself let alone a child - but I was younger and more naive then - time and hard lessons have made me cynical and harder. Nonetheless I would have kept that baby.  And she would have been eleven today.

Thankfully I don't need any sort of reassurance from anyone about my self worth.  I am a kind, resourceful, generous, intuitive and giving person who gives all of what I have to spare to others to sustain them and help our illnesses get recognised.  I have my faults and I own them, certainly there is a big flaw that has become more apparent lately, I self sabotage and I throw myself into advocacy to distract myself from my reality.  And it has been working, it has given me purpose when I felt like perhaps it was best if I were no longer here in hell.

Time moves forward, as naturally it does and my illness keeps me trapped.  My beloved friends are passing all those milestones adults take for granted as markers on their path through growing up. And now my heart aches as my best friends all fall pregnant and have babies. Although thankfully the love in me can put aside any sort of envy and just feel pure unadulterated joy at their gorgeous tiny humans, but the mother in me - and I am a mother because I carried a child in my womb, full term or not - dies a little more each time I think about the fact in a parallel universe my children could be growing and experiencing the world with theirs.   Little faces side by side grinning mischievously at the camera faces smeared with food, feet dirty and laughter tugging at their mouths.

To distract myself, I try to imagine a normal day.   One in which I awake and notice the sunlight catching dust motes where the curtain is parted, and I stretch cat like, feeling so rested and dreamy.  One of my two kitties Cooper chases my feet around under the blankets trying to catch my toes in a gentle bite and I giggle spontaneously.  

Just those few moments would be heaven.  Instead in hell, it is very, very, different.  The room is heavy with darkness because I cannot stand the light, it burns my eyes and my head throbs with the slightest movement.  And when I wake the first thing I feel is the intense bone deep ache that is always present.  I feel hungover, and am disoriented uncertain of the day or time.  Tobey my older cat lays near my head, ever my minder, while Cooper screeches at me to wake up and his voice is unbroken, frozen in the kitten stage and he sounds like he's being tortured when he is merely serenading me with his song of the morning and yet that sound yanks viciously at the motherly instinct in me and my body floods with adrenaline. I am intensely pained and cranky simultaneously.  And now thanks to the cat opera wide awake in hell.

I go to speak but I have yet to fumble for my medication as my mouth will not be manipulated into shapes to form words until I've gulped it down.  So I grunt and reach for my phone to call Ma, who recognises my number and drags herself up my stairs to get me from my bed.  I try to sit but my body doesn't cooperate and it takes six or seven attempts to manage to get upright. And then like a well oiled but clumsy machine, we load my walker with meds, pillows, water bottles, pawpaw ointment and I roll off the bed so we can pull the sheets up.

I fall down.  Hard.  I get up again trying to avoid the hand Ma is offering as her back is always paining her.  Then I start my weird gait, like a ping pong ball bouncing from wall to wall.  At one point I get stuck my head against the wall my eyes open, my arms dangling behind the bar that runs the length of the hallway and I am paralysed.  Thankfully I am at a lean to, so my chest takes my weight on the wall but my cheek is excruciatingly painful. Having been upright for a few minutes, my hands and feet have started to burn and the ache in my soles and palms is like nothing you can imagine.  My mouth is dry.  And it is all I can do to will my fingers to gently squeeze Ma's hand once to indicate yes I am present, with a predetermined form of communication.  As the time stretches my eyes widen in panic, my throat is not getting the air I need and my face is crushed against the wall.

Abruptly as though by magic I come unstuck and my body frees itself into an uncoordinated dystonic twitch as I rub my cheek and slur that I am okay to Ma.  We make it to my day bed where I unload the stores from the bedroom and assemble my pillows so that I am reclined with no strain on my heart and my knees are lifted with my feet slightly raised to take the pressure off my hips and knees as they are constantly dislocating.  I am very hot and my skin crawls as though a thousand bugs are marching over my body hairs.  My face is flushed and now my soles and palms burn to touch, I place them against Ma's cold arms for relief or hug  one of my stainless steel water bottles between my palms, relocating my hands as the bottle warms.

Suddenly I am cold, so I pull up the blanket that sits at my feet although the weight pains my legs and I wrestle on the jacket that rests behind my head.  It is this crazy flip flop of thermodysregulation where I cannot ever find comfort in whatever the climate.  In fact most all of it makes me sicker.  Ma cracks the back door for the cat to wander out and after one second I smell smoke, maybe a burn off.  I have ten seconds to yell shut door, turn on fan - thankfully we have an extraordinary ability to communicate without words and I gesture wildly as I lose my speech and the contortions take hold of my body.  I am wildly thrashing smashing my limbs about and when I can slamming my hands into my head to attempt to stop the explosion that feels like it's about to emanate from my brain. The movements slow and for half a second it seems okay, but then my eyes widen and my throat muscles stretch and contort.  Bronchial spasms take over my throat, closing my air ways and preventing air access to my brain. Although the oxygen is getting to my body, it is not getting to my head.  I pass out and continue the whistling breathing that indicates my throat has constricted to just a tiny space as though someone is gripping my throat with both hands and squeezing every half second.  Then I come to, frightened and disoriented and find Ma with the nebuliser and asthma meds held under my nose.  I grip her hand tightly and hold onto the nebuliser port with my other hand, wrapping my lips around the top.  I can't use a mask, they are idiotically made of plastic which sets me off. It feels like forever, but it's mere minutes and my breathing is no longer musical but my senses are dulled and I cannot see.  The lack of oxygen to my head has starved my brain and I am slow witted and uncoordinated.  Ma lurches for a towel and the valium and presses the towel to my chest, she finds the water bottle with the smallest opening, to slow the speed of the water down my throat and pours it into my mouth and quickly shoves the valium in.  I clap my hand over my mouth to keep it in.  Take another sip of water and cough, splutter and dribble it over my chest. I am shattered.

At least this time I didn't have a convulsion.  They now incorporate my tongue rolling back into my throat choking me.  It seems like every day I accept a new normal and yet the gaping maw that is the hell I fall into every day is bottomless.  Every time we find a ledge, it dissolves and we have to adapt.   So we do, we just keep adapting.  And I keep dying slowly, because that is what chronic is, acute illness that doesn't abate.  But we went from third gear to fifth really fast and something shifted.  Not just the gear.  In me.  I felt it. I feel like a ticking time bomb.  My low blood content means my blood is thick and throws clots and all the main veins to my heart are now clogged so I cannot get a peripherally inserted central catheter or a port because the veins are clogged, my body is a genius though, it's created a network of spider veins to carry my blood around the clogged parts.

I wish it would work out how to heal me.  I guess it is doing it's best just to keep me alive. Technically I probably shouldn't be.  There's too many things wrong.  It could be sheer willpower. It is the thing that's kept me going for the last fourteen years, arguing with doctors and specialists who kept getting it wrong and keep getting it wrong.  Thankfully there has been a few good ones on the way whose genius I didn't appreciate until much later and whose friendship I treasure.

This last six weeks or so I have been certain that death was near.  Two steps closer than before.  We've been neighbours for a long time, but now it feels like death is invading my space, getting in my way, like a guest who overstayed their welcome and is a little too familiar with your home and your things.  And I'm not ready to go.  There's too much to do.  Too many people to stop this happening to.  A government to be held accountable and specialists that need to be reamed out for their arrogance and misplaced logic.

I authored an article that appeared on the Mamamia website, although they sort of hid it - perhaps it's the paranoid cynic in me, but they ignored my comments and didn't respond to my email querying its placement - buried it in the second page under the wrong date when they sort them chronologically, perhaps Tick and Vector Borne Diseases are just too controversial for them.  Imagine how it feels for me and my community, we're not too fond of the controversy either but we don't get to choose to say oh well we will pretend it doesn't exist.  Didn't matter anyway, it didn't stop my peeps.  It very quickly garnered nearly a thousand likes and shares.  I also edited together a video of Tick and Vector Borne Disease warriors and that too has over a thousand views.  Plus I have shared the stories of my community on my charity page with my dear friend and co-founder Lee, Change for ME, to give insight and support to our members and their healthy loved ones.  I have been filmed for a documentary for students for their assessment piece for Griffith. And I have kept trying to reach out.  But I think I broke myself. Because I have nothing left.  And since death has decided to play dirty, I have to take myself out of the ring.  Concede this round. Take a time out.  Try and heal.  Because if I don't heal now, I can't help anyone later.  And I will be damned if I am one of those people who lives with this illness in our community for so long, fights to get my life back and leaves you all behind.  I won't do it.  I will always fight for us.  It is my calling.  Sick or not.  Let's hope not, but frankly I would settle for half and half.  Be a hell of a lot better than where I am now. Shhh don't tell anyone.  I don't want the universe knowing I'll settle at all.  I want it all the way back.  The whole hog.  The normal life.  Not some faerie tale, just normalcy. 

So in the meantime know this, I have a burning need to fight for you all.  I am not going anywhere. I'm just taking some time to slow down deaths march.  I don't fight dirty and he does. And there's something about being so sick and having had a few real scrapes with death that teaches you the difference between actual dying and feeling deathly. Unfortunately I am in the former category.  So I got to do what my wise friend Kae says, I have to put my oxygen mask on first, stop trying to save everyone else and save myself.   Because when I can save everyone. There will be no stopping me.

Please don't forget about me or think I've abandoned you.  You can always message me through my awareness team  Aid 4 Amara if need be and I will be back eventually - time is weird for us it can feel like forever and yesterday simultaneously, but it will be months if I am disciplined - so just hang in there.  

Also in the mean time my family and friends are fundraising through The Amara Campbell Foundation which you can message if you have any offers of support or help you can give them. They desperately need volunteers, as the beautiful team that put together the last fundraiser are all very busy and or recovering from surgery.

Love to you all.  So much love.
Marzi ♥

The Lost Language

I don't know what the word is for when you only speak one language. But that is me. Except I used to know another. I used to be tactile. To be affectionate. I would talk expressively and often touch the person with whom I was communicating.

My heart has always loved deeply and quickly and recklessly. Or perhaps not recklessly because I have an innate and unquestionable sense of people. My feel for others is so intuitive and natural it is like breathing. Just moments with someone and I can judge their essence and it's compatibility with mine.

For as long as I can remember I have been open, gregarious and extroverted. It is the strangest thing to take someone so open, so tactile, so loving - with networks of friends that overlap and stretch for miles - and shove them into a house and refuse them contact with the outside world. To isolate and alienate them until you almost break them.

I do have a keyboard I touch, but I do not touch you. I have lost my language of affection and I didn't even know I had it. Nor how fluent I was in it. It was probably my first language really. It was before I spoke that I touched. Now it is like a mysterious old ritual, long forgotten and unused. So it has become awkward and necessarily thought out to remember the customs of the language of affectionate interaction. Now I have seizures at the merest contact or even whiff of chemicals in my environment.

It is as though the perfect torture was crafted for someone like me. To give someone so tactile, so loving, so affectionate an affliction that disallows contact. 

That is why I fight. From here. Behind they keyboard. It's also why I give you glimpses of my suffering. Of my torture. So that you might fight with me. It's not enough that the sick have to fight their illness and fight for help. So I provoke you with my suffering. I hope to inspire in you a burning desire to fight for injustice. And to see the courage of my people. My community of warriors.

All the while I type on this keyboard, automatically clicking my fingers on keys, still able to touch type.... just unable to touch you. My heart is heavy with longing for the squishes and bear hugs I used to give out daily. The brushes on somebody's arm in reassurance, the squeeze of the hand, the kiss on the cheek or the light tight cuddle of a child's arms around you as you scoop them up.

Still I fight from here.  Separated from you by the walls. But every now and then there is no hiding it. The weight of the grief in my heart. Because without fail every time I see a group of people on my TV screen I cry. Sometimes it's silent tears streaming down my face, other times I sob. I miss the collective.

You are the collective. You can change everything. Help me fight. Stand up for my people. We can't do it without you.

To see what it looks like when I am exposed to the teeniest minimal contact with the outside world, follow this link:

http://youtu.be/gPbb8DZdY7M

To fight for us. To support our Thunderclap and make it roar, follow this link:

https://www.thunderclap.it/projects/10276-me-cfs-fibro-mcs-change-for-me

Set in stone

I look down and my feet are stone. Not stuck in stone. They are stone. And I am trapped. The walls change, but always the suffering is the same or worse. And from inside these walls like a voyeur I watch life peeking through the darkness.

Those connections I had when the stone slowly encased the soles of my feet are mostly lost. I see you all on distant media. I watch you grow and leave me. The distance is so great it is like your feet are weightless. You fly.

As we mature we move away from people, and closer to others. It is the natural order of life. But I am stuck. So you might think I am not trying, not reaching for you. And yet I cannot. My suffering has made my world so small, my steps so heavy that I can barely find purchase on the walls to steady myself.

So I watch instead through social media inside this dark space. And it is a blessing and a curse. For I am glad to participate in your life in the tiniest way just by being privy to witnessing the milestones and markers of life as you travel away from me. But it is also gut wrenchingly painful because I am immobilised. I cannot participate. And I wonder if I ever will again.

See, you can reach me. But you have forgotten I cannot reach you. It is as though you believe we have grown apart naturally. And perhaps we might have. But we didn't. I just couldn't grow at all. You did all the growing. 

While you were filling each moment with life. With love, loss, suffering, travel, family, homes, moving, exploring, evolving and living..... I was enveloped in the darkening grey. In stone. In suffering and loss. And when I dare venture to visit the colour it is when I was last connected. Which is a millennia ago for you. But it is yesterday for me.

For if you think of the very last time you saw me truly healthy, unshackled by pain, suffering, intense exhaustion, confusion, anxiety, memory loss and weakness – the last time there was no wall between us nothing stopping me from being completely engaged in the moment and keeping me separate – you would realise with some shock that it was over a decade ago and I was in my late teens, maybe very early twenties.

Remember back then? Maybe you don't feel like you can fly any more, but back then our feet floated in the air and anything was possible. I got trapped there, grounded. Like a demented window shopper.  A statue who can only watch life in the dark through the shuttered gaps of the windows.

Even now the stone creeps further up. I wish you would look down and realise that you can fly. And that my feet are of stone, soon the whole of my legs will be overtaken. So there is only so far I can stretch. I am sorry I cannot reach you. I can barely reach me. I am scared even the distance to the the window will be too far soon.  That I will not even be able to have those tiny voyeuristic peeks through the darkness at your life.  

Until then I try to maintain even the smallest of contact with the statues that populate the darkened spaces on the distant media, made closer only by their plight.  They too have been carved in stone by the cruel artistry of chronic illness and are stretching wildly towards each other. I brush my fingers tips against theirs at full stretch.  And wait for you to come closer.  For me to be free.

When there is space again, when my feet are freed, when the light streams in and I can move without struggle, without the assistance of walls, I shall reach.  You may no longer be there.  But I will try.

And if you are gone, I will recolour my life with an abundant freedom of choice.  Who knows where or how it will be built.  The future is not set in stone.

It's not easy being green

So...I am positive (and despite my sometimes – well often – dark writing I am actually genuinely usually quite upbeat.  But what I mean is I am positive for Lyme Disease). I also have some co-infections.  And just BTW this background choice was here long before I even thought I might have Lyme - subconscious instinct maybe?

Here's what I can tell you about Lyme so far, it's likely that the Babesia (a Lyme co-infection I have) is for me the more acute, more dominant infection and therefore I am displaying more obvious symptoms of that - namely increasingly bizarre neurological symptoms.

Let's start with the one I like to call the dramatic interpretation of the thesaurus. That is a combination of a few: weird dance style cheer leading moves, while repeating five alternate ways of saying something (because I can't find the exact word or phrase I want to use) interspersed with musical Tourettes and cheer freeze movements punctuated by clapping, smacking or stomping.

The catalogue of walks: the bless this wall walk, where I walk up the hallway facing the wall holding onto the new bar (imagine a ballet bar running the length of the hall) pressing my face against the wall every few shuffles, the crab walk, the grapevine, the ass first around corners manoeuvre, the squat walk, the shuffle, the child learning to walk walk, the drunk walk, the I have to turn three times at speed before I walk walk and the going down the stairs walk. Can you believe there is no moonwalk in that mix?

Then there is noddy: this is where I suddenly drop to the floor or lose consciousness mid speaking, showering, walking, sitting... just drop like a stone. The strange thing is though that I'm not fully unconscious it is more like I am frozen, but I am not conscious either as time is transient and I can't really tell how long has passed. 

And the Dick Van Dyke tribute: where I suddenly start talking with a weird version of an accent, whether it be Chinese or Italian or Kiwi. Then the related and usually simultaneous symptom of volume control... where I either am shouting words at random or suddenly whispering something while cupping my hands to my ears or forehead (apparently, because that's where I speak from).  Or the reverse it sounds like anyone speaking to me is not only speaking with an accent, but in another language and I simply cannot understand them.

Slow motion interpretive dance: this is a pretty frequent daily occurrence where my body moves of it's own accord.  Usually my neck and head, arms and torso doing free form interpretive dance or a series of moves - the salute where I repeatedly bang my head like I am emphatically saluting, the pick me manoeuvre where my left hand keeps shooting up in the air, the double pick me - where both hands go straight up, the bow down, the chin up head shake... there is too many to count. The tempo of this jig is dependent on what's causing it.  If it is just my usual brain farts, it's slow.  If it's in reaction to chemicals this turns into a high speed disco.

Language and singing portion of the show: where I have musical sound effect style Tourettes. I sing parts of sentences or make beat box musical noises – not well I might add. Or strangely I sing whatever I'm saying to the tune of a song or lullaby. Highly irritating. Oh and MA rated inappropriate Tourettes too. Which makes Ma highly uncomfortable cringey and full of shhhhhhhs. Unfortunately the more I try to suppress the urge to speak/yell/sing the worse it gets (plus a migraine)... so f$%k it, suck it, duck it.  

Oh and last but not least who can forget (mind the pun) the amnesia or dementia symptom: where I start calling my sister or mother or even my father – that girl... you know that, person that lady. I call Mum Marzi (my nickname) and cannot for the life of me remember the cats' names (Tobey & Cooper) so end up yelling out things like furry little people or pooper or Cobey or Tooper or f#$kingwhathisname. And the highlight is forgetting who I am, where I am and what's happening which seems to frequently result in me yelling, “what?” in people's face, “what's happening?” at the top of my lungs. “What am I doing?” “who?” “what?” The last time it happened quite dramatically I was (insert sarcastic context here) conveniently at the doctor's office. Where thankfully he didn't miss a beat in the face of my thunderous questioning of all these pressing theological matters. “what?” “what is HAPPENING?”

So Lyme is absolutely not my favourite colour. My school uniform was two shades of green... and I hated it then. Now I am stuck with Lyme. At least for now. In the meantime I will be performing daily. A Lyme variety show – 'It's not easy being green'. Come all takers.

Meet Marzi - guest blog post by kp

The following is a post by guest blogger kp.   She of infinite kindness and outrageous generosity has become one of my best friends and a invaluable support throughout the last few years.  In moments when I think I might drown, she is the first to offer a hand up.  You can read kp's smart insightful blog about her life with ME/CFS at Life in the shadows and her crafty and delicious mirror blog about creativity and the beauty of life at Turn your face to the sun

Meet Marzi by kp

Amara Campbell is a vintage-loving bowerbird.  She has a bit of thing for owls.  And trees.  And definite views on fashion. Intelligent, generous and hilarious, she is a born writer.   She's a bright shining bombshell of a woman.  She has a smile that wins you over instantly.  When you look at old photographs of her surrounded by friends you instantly see that she's one of those people who lights up a room.  

She is also very very sick.  She has had ME for more than a decade.  And this illness is doing all it can to dim that inner light of hers.  

I met Marzi a few years ago, not long after I joined facebook.  She was the first person with ME I found on there who I really clicked with.  We were born a couple of months apart, shared a lot of the same interests and got along like old friends right from the word go.  Quite quickly we got chatting about the possibility of starting up a local online support group and in the middle of a conversation about this she disappeared for a minute and came back to let me know she had just set one up!  I was more than a little gobsmacked at her 'just do it' attitude.  And I think that was my first real indication of the person she is. 

That local group has continued to go from strength to strength, and remains one of the most supportive and friendly environments I have come across on facebook.  I attribute that in no small measure to Marzi and the way that she leads.  She has such passion for changing things for people with ME/CFS.   In the midst of everything that she is currently dealing with she recently set up an awareness and advocacy group called 'Change for ME' (in partnership with Lee Lee).   Recently she told me that the reason she pushes her health beyond its limits on this front is because she feels she doesn't have a long time to do it if things continue the way they are. 

In the time that I have known her Marzi's health has gone markedly downhill.  I vividly remember one day getting a message from her asking if she could call me.   She was struggling to cope with one of the first episodes of dystonia (actually ending up at the hospital not long afterward).  It was hard to even understand her as she tried to explain through the tears what was happening.  Her fear and suffering were unmistakable, her distress palpable. 

Since then the dystonia has become more severe, unrelenting and increasingly resistant to treatment.  Before the neurological damage is irreversible she desperately needs to see the specialists who may hold the answers to the mystery in her body that is holding her hostage. 

The warrior woman who is always fighting for others now needs people to form a web of support around her.   
  

The video below was created recently to try and give people a little glimpse into the suffering that Marzi deals with daily.   Of course much of this is felt and not seen, however the dystonia - a movement disorder causing muscles to contract and spasm involuntarily - is blindingly obvious (and incredibly confronting).  

It is heartbreaking to watch a friend suffering like this and I will do everything I can to change things for her.  I believe that anyone who has knowledge of what she is dealing with will also want to do everything in their power to help.

You can find the Aid 4 Amara page with more information - look in the 'about' section at the top of the page - on facebook.  Or if you'd rather avoid that strange land some information can also be found on the Giveforward site (where a page has been set up to allow international donations).

Change for ME Australia

What I want to know is this. If you were suffering. If you were either in and out of hospital or simply so weak that you couldn't function, would you like to think that people would help you? You would wouldn't you?  

What if you didn't have the option of financial support from family. And if your illness for some bizarre reason, even though life threatening and more disabling than many known illnesses, didn't qualify you for government support. If you then were left in a severely disabled state, with no family support, no financial support, and no charity dedicated to helping you. And you couldn't access the medical care you needed and you were young. Young enough that the fifty years stretched in front of you looked like too hard a journey, when frankly the next fifty minutes was too hard.  What would you do?

We all like to think we are good people. We like to think we help. But do we really? How often do you see your sick or elderly family or friends? Is twice a year or even three times, enough?  What have you done to help them lately? Have you asked them if they are okay? Have you asked them what they need? Have you considered that everyone is thinking the same thing, that someone else is helping them?  That it is not really my job, not my responsibility. But if everyone is thinking that, who is left?

I am living with an illness that as many as 200,000 Australians have. And of that 200,000, there are up to 40,000 of us who are house or even bed bound. It makes me so furious I can barely breathe at the injustice of it. We are suffering. We are alone in our fight. And NOBODY is helping us. I couldn't stand by and watch this when I was healthy. And I sure as hell can stand by and watch it now as more and more of my community fall through the cracks, become suicidal and completely disempowered by government and the community's collective deafness to our plight.

We will not let that happen. And I want you to help us do the right thing. I want you to stand up for people who can barely stand up for themselves. This will be looked upon in coming decades as a shameful period in our health history. That people suffered as I do, as we do and nobody is doing anything. Yes there are great doctors doing research and yes there are brave doctors treating us. But they need support, they need help. It is too much, the weight of so many of us on the shoulders of so few. It is shameful. If I had a recognised illness, government would subsidise my treatment and a charity would provide me support.  I would have help with cleaning and cooking, with running errands, with doctors appointments.  There would be choices and options everywhere I looked.

Instead I have ME/CFS and my symptoms have become so acute that in moments I cannot remember who I am. My language has become so muddled that the name of simple things like chairs or tables elude me and in moments the best I can manage is nonsensical noises.  My pain can be so consuming that for days I am stuck in a dark room unable to move. And my weakness so great that my heart strains when I move.

Still when lucid, I cannot stop thinking about my community. My brave, beautiful, strong, courageous community. And I with another ME/CFS warrior started a page to make a positive change for people with ME/CFS. So that future generations do not suffer as we have. We are called Change for ME Australia.

Please watch this video:

And then follow us on Facebook  Change for ME Australia and Twitter Change4MEAu

One day soon.  We will see the positive change that you helped create.  Please join us today and be the change we need to make a more positive future for people with ME/CFS in Australia.

Voices from the Shadows

All around the world, even now as we speak children are taken from mothers and the gravely ill are sectioned in psychiatric wards. ME/CFS has a torrid history and the medical profession is left useless in its wake, relying then on the tried and true strategy of blaming this enigmatic illness on the patient.

We who suffer with this illness, become cynical and hardened by the constant fight. By the need every day to gather the willpower to choose to keep fighting this unwinnable battle, while on the sidelines the medical profession yells taunts and derision at us. Their inability to puzzle out our illness, makes them condescending and dismissive. They are stymied by  ME/CFS and rather than treating it as a common enemy, they turn on us.

Right now in Spain a very sick child has been taken from her very ill mother. Even though leading Spanish ME specialists have declared that the child has acute ME and should not attend school on days she is too weak. Even though a judge declared that challenges made by the government to remove guardianship from the mother (also sick with ME) was not in the child's best interests. Even then, the Spanish government has taken this child and put her in a psychiatric ward and refused the innocent mother access to her sick child.

In England a man visiting from Canada who was also very ill with ME has been sectioned in a UK hospital. And this is not just a foreign problem. It happens to Australians too. It has happened to two people I know. Likely more, because it is a shameful thing that people do not want to share.


There is an estimated two hundred thousand people in Australia with  ME/CFS.  Of those a likely forty thousand are house or bed bound, silently screaming for help

The film Voices from the Shadows is a documentary film created by family members of a severely ill ME patient. It speaks for those of us who are unheard. It is important viewing for everybody, but crucial viewing for anybody who loves someone with ME/CFS.

Voices from the Shadows Trailer from Josh on Vimeo.

A reviewer from the Chicago Sun Times has written a review almost as moving as the trailer. Scott Jordan Harris ironically is also a soldier in our war. He too has ME. It is worth a read A howl of desperation for those who cannot howl

My record player is emo

We live in a world where we are constantly prompted with subconscious social markers and clues in order to help us behave appropriately and to know what to expect. When you watch a TV show, whether you are aware or not, you will know by the way the camera moves, what type of scene is about to take place. If the camera is watching someone through the branches of a tree you will know that character is being spied on, but if the camera moves slowly from behind the tree and just watches the character from a distance, you will know the character is having a pensive moment and the imagery suggests they are given space.

When you watch a movie, the music or sound will communicate what type of emotion they are prompting from you. The melancholy music or dramatic sound effects getting you ready for the emotion of the upcoming scene. Those of us with severe CFS/ME have a sound-track of atmospheric melancholy music that changes in moments to vintage comedy capers music to coincide with our daily slapstick routine or shifts to threatening thrumming bass as we near death, only slowing down to turn back to melancholy.

There is not often hopeful music, or even a camera panning to the sky to say goodbye, instead the camera discreetly backs out of the room, us in centre screen skin looking translucent white, eyes blackened, lying heavily in bed surrounded by medication having completely given up the pretence of a pretty room for the practical needs of survival. And maybe there is a script in the end credits describing our continuing fight and running statistics on the truth about death and severity of CFS/ME.

The psychology of CFS/ME is not like other illnesses. We do not get given a package of information about statistics and treatment options, the likelihood of survival and how to better our chance to achieve that nor do we get to look forward to the sweet relief of death and the acceptance of having to say goodbye. We do not wish for death, but we wish for closure, for escape from the torture of uncertainty. Our ultimate wish would be to hear hopeful music, see a montage of us over the years in various states of decline and then some miraculous treatment turns us around and you get to see us building up our strength and working to get our lives back.

Unfortunately for most, that is not what our experience is. And what I've realised is I've grown tired of waiting to hear the triumphant music. That I hate my emo record player and it's evil addiction to dark whining notes. What I wish to do is change it, but the ceaselessly moving floor and my inability to walk properly makes it impossible for now.

So I live my life in intervals, small snatches of clarity, tiny moments of balance very rarely free from pain and never free from exhaustion. People around us struggle with the complexity of the psychology of CFS/ME. We struggle to balance on an undulating floor that moves to no discernible rhythm, unwillingly swaying to the atmospheric melancholy siren and wishing to hear a joyous symphony.

His name is ME

I must warn you, there is no escaping him. He comes to you like a jaunty salesman, using sleight of hand to sell you lies. When he asks you what you hope for, what you dream of, don't answer. He will not give them to you, he will take them from you. He is a dream eater, a hope stealer, a futures thief.

Imagine the things you love to do, the simple things, the fun things, the silly things. Now imagine the things you hope to do, big and small. Just like that he tricked you into thinking of them, and now he has stolen them from you. Gorged himself like a junkie on your hopes and dreams, so he is fat and satiated and you will go mad with the loss.

From now on you cannot travel overseas or go camping, you cannot go out to the pub or dancing, you cannot go shopping or to picnics, you cannot go to the movies or to a salon, you cannot play sport or exercise, you cannot cook dinner or drive to get takeaway, you cannot garden or even compost, you cannot walk your dog or clean your house, you cannot drive or some days walk.  And for the future, you cannot work or study, you do not have financial freedom, the pension is sparsely enough to allow you dignity, you cannot have children and you may not ever find love, you cannot own a house or build a house, you cannot buy a car new or old, you cannot live where you want, do what you want or be who you want to be. You cannot do anything by yourself. Rarely, if you are lucky you might get to do one of the can-nots but it will be at the whim of others, you cannot choose anything for yourself.

He tricked you, and now until you die your living will be like dying. But his sleight of hand is like artistry and while you live with that horror, it will be invisible to the outside eye. Occasionally your hopes will be raised when you think a discerning eye has seen through his trickery, and then you will deflate with the realisation that they have not. His mark is indelible, and he has pulled a heist so complicated you would admire his genius were you not the victim. Because while you suffer the withdrawal of your future, you will also be wracked with pain, exhausted beyond comprehension and barraged with symptoms so rare others will wonder if they are makings of your own creation. You would laugh at his audacity at the ridiculousness of his plan, but it is working. You are alone, you are close to death, just close enough to prolong the torture, not so close to death that there is relief. And yet no one sees you, no one is watching and slowly they forget you. He has alienated you so effectively that your voice is no longer heard. He has made you so small, taken everything from you, left you weak and desperate without any hope for the future.

He has the last laugh. Because when you try to tell people his name, they will look at you with incredulity. His name is ME.   

Symptomatic

My chin juts forward pulling my neck into taut visible ropes of muscle, then swings abruptly to the left drawn magnetically to a target I cannot identify, my shoulder raises in a one sided swinging shrug to meet it. My head juts forward again, eyebrows forcing themselves up announcing a surprise I do not feel, and my upper body twists. The movements are spasmodic, violent and unpredictable. It is as though my neck has lengthened and all my joints loosened, my movements not unlike a puppet with an inexperienced puppeteer, disjointed and violent. The muscles that run between the joints strain to contain and control the forceful contortion, tightening into knots of pain as they contract and release.

I try to speak and it is as though I am verbally constipated, my eyes roll sideways and upwards, my chin juts forward again, my throat constricting. Words come out eventually but they are garbled, half strangled or they stutter out in increments.

When I try to rest my body rises suddenly and frequently off the bed, like a patient being shocked with defibrillator paddles. My eyes feel as though they are bugging out of my head, they strain to break free of the constraints of my eyelids, darting dramatically to the side or scrunching emphatically like a child learning to wink.

These symptoms built up over a few days last year before I realised I should probably go to the hospital. Since we get so many weird and wonderful and ultimately inexplicable symptoms, I have a policy of giving new oddities a few days to subside before I investigate them.

This one required attention though and when I attended emergency, the doctor asked incredulously why I had not come earlier. What I was suffering with was an acute dystonic reaction to medication, so acute that staff from far and wide came to watch me do the drunken uncle contortion dance in my seat while I waited for treatment. The treatment was a reversal drug, Cogentin, given intravenously in an injection. Problem being of course that the puppeteer refused to relinquish the marionette strings, so like a possessed or crazed patient, I had to be held down by two nurses, a doctor and my sister. And still I writhed, the spasmodic disco increasing in intensity until they pinned me down again to administer another injection.

The thing is, a decade ago, before I was ill, this series of disturbing neurological symptoms would have had me scurrying in a panic to the emergency immediately. But with hard won experience of sceptical, dismissive and condescending doctors, I avoid emergency rooms unless it is absolutely necessary. Even then I am loathe to go. Because when I go to the hospital despite the clear acuteness of my illness and whatever symptoms are threatening my life at that moment, the doctors put on their blinkers, become tunnel-visioned and refuse to see what's right in front of them. I could be having a heart-attack in front of them and they would simply raise their eyebrows at my theatrics.

I am now suffering my third bout of Dystonia. And I am not sure why the latest attack has happened. But how incredibly sad is it that, their behaviour, causes me to suffer unnecessarily rather than face their discrimination?

So instead of avoidance, I have decided in future to pose a few questions to my treating doctor/s. (Well in the case I can speak, otherwise I might just have to type them out.) Firstly, do they love anyone who is ill with CFS/ME? Secondly, if not, have they read ten or more research papers on diagnosis and treatment of CFS/ME in the last year? Thirdly, if their answer is no to both questions, how can they be so arrogant as to assume to speak with any authority on my illness? Their qualification to speak on CFS/ME is non-existent. It would be like a biologist attempting to speak on entomology. They are both sciences, but they are poles apart. And lastly, with no appropriate qualification I would appreciate that they reconsider their perception of my illness until they are better informed.

In the meantime I will suffer this contorted dance, symptomatic of acute Dystonia and I will dread the hospital and their derision, symptomatic of the medical industry's continued pursuit of ignorance of our illness.  Somebody investigate the cause of the symptoms, please and then we might find treatment.