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

To be sure, to be sure

You know I'm turning Japanese, I'm turning Japanese I really think so.... except I'm not. I'm turning Irish. Northern to be specific. Or at least I sound that way.

*Please see note at the bottom before playing these files

But the weirdest thing is. Besides being Australian. Is that it comes and goes. It's called transient Foreign Accent Syndrome. And it's been with me about a week. Even now in my head I sound Irish. I could type how I would speak, but it's strange because it's not how I speak. And it's this strange tug of war in my head. I imagine what it is to be bilingual and whether it's like that. Except of course they're both English languages. Still the idioms (I actually really want to write idiosms there but apparently that's the bastard love child of two words my brain mated – idioms and idiosyncrasy), the linguistics and the rhythms and patterns of speech are different.

So let's just try letting the Irish woman take over.

This mornin when I woke I had focking mad pain all over and me eyelids were so focking 'eavy that I could barely see out them. Then me Ma'am showered me – well she hosed me – an' I musta passed out at least seven times. It's not been a good'un. I have the sorest focking head and to make it all the better, me brain decided I was a bull and the wall was one of those nancy pants bull fighters with their stupid red hankies and I ran full speed at it so hard I think I came close to breaking my focking cheek bone. You can guess who won. Now me 'ead feels like it's wriggled loose off me neck like a bobble head. And me cheek feels like it's still focking corked. It hurts like a mother focker.

Alright I have to stop that now or I will more likely get stuck there and it's so painful for my mouth and jaw to make those noises and shapes so differently to my normal speech patterns (I actually have for the last few years had to speak out loud when I type or I forget what I am saying).

It's torture. And slightly scary. It was funny. But it's not funny any more. Because it's not budging. I can be talking normally and then I drift into this other accent and it gets thicker by the minute. And it sticks for hours. Plus there is no way in any version of reality I could actually do ANY accent with any proficiency without sounding ridiculous. But this is not just passable. It's proper. Except for one dent in the Northern Irish woman.... apparently I should say shite and I just say shit with the accent. Otherwise it's been pretty flawlessly Dubliner or Belfastian apparently, a friend of a friend from Northern Ireland said, and I quote, “Sounds more inner city Dublin or maybe country northern Ireland or even Belfast.”

I guess I'll just leave it at that. I haven't got any great insightful things to say about it. My brain is hurting so intensely just from the circus that it's already coping with. Like I wasn't a bloody weirdy weird pants enough, we had to add another symptom to the mix. And a rare one at that.

I do know one thing. From my brief time studying a creative writing degree before I pushed myself into this very relapse, I was told by several tutors and lecturers that I have a good ear for dialogue. I can easily imagine myself as a character and write in their voice. And I actually dream from all perspectives. I dream as various characters in my dreams through their eyes, man, woman, child.

But this is taking having a good ear to a whole different level. And frankly, despite my love of the Irish people, I would rather like to just be little ole' me.

By the way before I go, I can't leave this unsaid.  Me Ma just asked me if I was putting this on YouTube or booger.  You read that right.  Booger.  You wonder where I get my bloody weirdy weird pants from.

*Note: The audio files I've added are not PG. I swear. More than normal. Although if you haven't spoken to me you wouldn't necessarily know I swear like a sailor. I have temporal lobe damage and no filter. Add in that the Irish are free and expressive with their swear pants, well let's just say I would listen to it through ear phones if tiny humans are nearby.

Note 2: Please do not take the piss out of me. I can't take it right now. I do know most people find this hilarious. And I get it. It's funny. But you must understand it's also slightly terrifying for me. The suspected causes for this type of thing can be a stroke, lesions or tumours. That is obviously the worst of it, there's likely very benign reasons this happening also. But still. I'm too fragile for ribbing at the moment. Save up your witty one liners for when I am back to normal okay? Then we can enjoy them together.

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 ♥