GoFundMe Update - Flashback to my first years vs Now

Thank you for helping me get a part for my sleep apnoea machine, medications and food.

I keep saying it's like the start but you don't know what that means... so I will dig up a piece I wrote. It articulates what the first 10minutes of the day feels like (excluding my now constant chemical allergies, POTS and neurological symptoms; seizures, tics, tourette's, convulsions, dystonia, paralysis, apnoea while awake, language issues, motor skill dysfunction etc).

~~~~~~~~~~~~~

Imagine that you are in your bed. You are under the blankets and they feel very heavy, pinning you down, weighing on your aching body. You are so uncomfortable, but even readjusting, turning or moving your limbs is really hard. It’s too much and you are so exhausted. You’re in that horrible place between asleep and awake where people go when they’ve slept too much, but you can’t open your eyes. Your eyelids feel weighed down. When you finally manage to force them open, you are confused and can’t work out where you are, even though it’s always the same, you don’t recognise your room. Fighting with the blanket in an awkward struggle you become aware of the sensation of what feels like tiny bugs running all over your arms, and the muscle just below your left eye twitches incessantly; the combination of sensations make you feel like you’re on the verge of madness. You summon the strength to get off the bed; you stand and immediately plonk back down, the dizziness overcomes you. You sit for who knows how long, to still your head, you have no concept of time and the loud silence that used to bother you, feels nice, comforting. When you work your way into an upright position again you can’t remember if you were going to get a drink or go to the toilet; you are so thirsty all the time and your throat aches.  In fact you drink over ten litres of water a day, and it makes you need the bathroom so frequently it feels like an exercise routine. The fog lifts slightly and you realise that the need for the bath room is the more insistent one so you start to walk in that direction, only to run into the wall because you can no longer sense where you are in relation to things. You can no longer take anything for granted, especially talking, walking, and functioning as the useful human being you are accustomed to. Everything is a struggle that requires intense concentration, which you of course cannot muster.

I’ve just taken you through what ten minutes of one of my day is like. Hopefully it has given you a bit of an insight into what sufferers of Myalgic Encephalomyelitis experience in their daily struggle. I’m going to talk further about my onset, the damage ME has done to my life, the general misconceptions about this illness, and lastly and more hopefully, what you can do to help.

I contracted viral and bacterial infections simultaneously Easter weekend 2001, having been sick at work for months before but I kept pushing through. But, that was it. I was hospitalised and then spent the next 2 years sleeping eighteen hours a day. When I was awake I was not really awake. You know how it feels if you are a drinker and you have imbibed way too much, and then somebody tries to wake you up from a deep sleep. That is how I felt for the six hours I was awake. I can honestly say I don’t remember anything from that time except the impact of September 11.

This illness has turned my life on its head. Aside from losing six (now eighteen) years of my life, I lost my job and had to move home with my parents, who were struggling themselves. A lot of people I worked with thought I was a hypochondriac. When it was suggested I might have Diabetes Insipidus, people were kind and understanding. Then Diabetes was ruled out and a colleague whose brother had Chronic Fatigue Syndrome (an incorrect term for the diagnosis but the only one available to doctors in Australia then) suggested perhaps that was what I had. Indeed it was, and the change in some people’s behaviour towards me, upon hearing that diagnosis, was upsetting. Some friends, work colleagues and even a member of my family treated me quite harshly and with a lot of scepticism. Even though I was clearly very weak, and often fell asleep mid-conversation, they were unable to recognise or understand the gravity of the situation that I was facing. The fact that some days I looked okay, normal even, compounded the problem. Those of us with ME/CFS have very little social contact; so on the odd occasion when we do venture out, we use all our energy to seem okay. Therein lies the problem. 

In 2003 a working party in the US pushed for a name change because it argued the term chronic fatigue focused on a single, poorly defined symptom (fatigue) and this promoted a profound misunderstanding. ME/CFS is diagnosed, after the exclusion of other possible illnesses, by the main symptom of Post Exertionsl Malaise- severe, unrelenting exhaustion that is common in all sufferers. But there are so many other debilitating symptoms, and the chronic fatigue tag really doesn’t cover the range of symptoms or the severity of the illness. We all suffer differently, every one of the estimated two hundred and fifty thousand Australians who live with this illness. I have so many strange and varied symptoms and yet my combination of symptoms is unique to me. I suffer with insomnia, aching joints, dizziness, loss of vocabulary, cognitive problems, loss of spatial perception, muscle twitching, incessant unquenchable thirst, sensitivity to light and sound, and the list goes on, there are many more. The severity and combination of symptoms I suffer with and those that the next person suffers with are very different. At its worst, Dr Mark Loveless, Head of the AIDS and CFS clinic at Oregon Health Sciences University has likened ME/CFS to feeling effectively the same every day as an AIDS patient feels two months before death. But the variance of symptoms from one sufferer to the next is why treatment is so difficult. What works for me, may not work for the next sufferer. So we each have to seek out our own solution and through a combination of trial and error, find the treatment that works best for us.

As the now sadly deceased Alison Hunter said, ‘The fatigue is not every day tiredness, experienced after an energetic day’s gardening. It is an exhaustion of the body and mind, so profound that it becomes a concerted effort to think, walk and sometimes even move, sit, eat or breathe.’ She is one of the many who have died from complications of this illness. Before there are more, we need to get people to take this illness seriously and then we may have some chance of getting more funding to find a solution. 

~~~~~~~~~~~~~~~~~

This was hard to read. Not much has changed. And I am so much more acutely ill. It's time for a revolution. Please find Unrest the documentary and watch it knowing these patients have the good fortune of access to treatment, a huge support network and money to access care. Or look up ME Action for your country on all social media platforms. 

As always your help is greatly appreciated. 

Masses of love, light, blessings and gratitude 

Marz x

"Our hope now is to help her have a life. If you want to help Marzi to ensure she keeps her head above water and keeps up bill payments and can afford medications please support go to:

https://www.gofundme.com/a-life-for-marzi 

or

PayPal aid4amara@gmail.com

or

Bank Westpac A Campbell

BSB 734083 ACC 629164

Please share widely and donate as much or as little as you can. We thank you for following her journey and supporting us and The Amara Campbell Foundation   😊

💛 Aid 4 Amara team 💛"

Marionettist's Escapee

Trapped in a deadened slumber, my body sinks into the bed. I am awake but my brain is only dimly aware of the world, far away, muffled through a lens and filter of the sleep only those who've gone days without it understand.  My heart is suddenly galloping, a terrified thoroughbred, mane trailing, tail horizontal, clip clopping manically through my arteries causing anxiety to follow in its hoofbeats. My heart is trying to escape a throbbing bass reverberating up my throat.

Adrenaline is flooding my system in a  desperate push to move me to act in response to the poison it's sounding the alarm for.  The smell of chemicals burn my nasal passages,  grip my neck, my throat muscles clench in and out touching each other in painful escalating speed. My chest aches and asthma is a medieval corset. It squeezes my lungs. Instinctively my breathing shallows and the exhale whistles in a thready gasp. 

My brain lets rip a muted roar for oxygen. Words are beyond my capability. I mime uselessly at Ma gathering all my strength to wildly eyeball my nebuliser, my hand a dying fish on its last pointless flop against my chest as life giving oxygen drains from me. 

We suck at charades or rather Ma does.  Yesterday while paralysed having stopped breathing, tears leaked out of my eyes, my body's distress streaming rivulets down my face as I tried desperately to get her to notice my unmoving chest. My muscles remained stubbornly fixed my eyes unblinking. I had been here before, paralysed, not breathing but some part of me had known to preemptively put oxygen on... this time I was not so fast. Even then the nurses called a code and started resuscitation as my lips turned blue. Screaming, "Come back Amara, come back." I was right there but helpless in my silent bubble.  Locked in.

Have you tasted the poison of chronic infection? It drips steadily down your burning, aching throat, throbs and leaks in your ears. That is what's happening except I can also feel my cells ablaze with stuttering inefficiency.

A galaxy of cells sputtering and choking on tendrils of infection. Webs of bugs catching cells and causing my immune system to misfire. 

The fighting cells, warrior cells are weakening my body in their battle to thwart these infections and viruses. Draining my energy dramatically like a car with a battery that goes dead suddenly. 

My body is desperate for the poisoned Snow White slumber to recharge and build the energy necessary to untangle my immune system warrior cells from their battle. It is a crash episode one that echoes my earliest days of 18hours of sleep daily and 6hours of zombie. Stacked on top are neurological symptoms  twisting my body into contortionist dance coordinated by a wicked marionettist formed from the bugs that riddle my brain and bones, a hive mind demanding my body seize, convulse, freeze me in paralysis and cease my breathing. 

I am not destined to be a marionette forever. One frayed cord snaps off at a time. The more determined I am, the more focussed, I find myself using my contortions to pull tension on the elaborate construction holding my body in the mad marionettist's rough hands.  His beloved frame is dragged haphazardly across the sharp edges that inevitably meet my body. Each time those strings wear and fray, a fine fibre of yarn, one strand at a time discreetly snaps and I am ever closer to my escape.

Narwhal

My lungs hungry for air, my eyes sticky and heavy, laden with sleepless restlessness and a pain so bone deep it feels like my marrow is aching.  I peer through the blurry constellation of floaters that whisp across my vision in the dark night room where the curtains hold back the midday heat and glare of newly sharpened knives, desperately trying to reach their target of my vision, like a knife thrower finding the balloon.

This is the way I wake every day. It is why seventeen years have passed and still I feel like I am the girl who just fell ill and believed confidently she would recover quickly.  Instead my life rolled slowly down a hill with little peaks, until it found the massive decline and sped recklessly towards every more endangering moments. When suddenly days were filled with such intense suffering my body began to accept that adapting to the new and life threatening addition of symptoms was the path of least resistence.  

Doctors were useless, except those who braved the special subset of uncharted or at the least secretly charted treatment of this confounding curiosity - like the long believed extinct Narwhal - passing newly discovered research and anecdotal information amongst a network of explorers. The rest, those outside the network live in a state of cognitiive dissonance believeing the impossibility of the existence of such a combination of curious symptoms were nothing more than a psychological failing of the patient and the treating doctors.  While the doctors who knew better, risked reputation, invested fully in unmasking the reality of us, their curiosities.

It became tiring gambling constantly on the hopes that some new specialist may have access to the network of explorers quietly accumulating knowledge and occasionally sneaking research papers out into the public, placed in the revered Lancet. Yet still ignored by pathologists and the medical profession at large who sought to cage the Narwhal, like patients with inaccurate classifications, easing their own egos, for they dare not imagine a beast of fable when they could instead more easily concern themselves with easy to treat classifications, however ill fitting.

So today I sit here, my gray matter aged some ten to fifteen years past my bioloical age, my youth stolen, and I wonder have I lived in denial for this long.  Patiently waiting for some explorer to find me befrore I became extinct? Although truth be told there was not chance of extinction for there are too many of us and we're nearing pandemic levels.

The realisation was and is earth shattering.  I am on a ledge psychologically dealing with an age that befits someone who has a history of life, of moments filled with love, joy, loss, happiness, sadnes, grief, choices in career, partners, children, buying homes and cars, instead I'm dealing with the most intense heart ache I have ever felt.  This time stolen from me, this life of memories and connections, the alientation that taunts me and the bravery it took to get here feels like a rising tide full of flotsam and jetsam.  When the ledge slides into the sea I hang on perilously to the pieces of who I used to be and yet imagine letting go and just drifting to find myself.

Who am I?  I am not illness. And despite knowing my classificaiton by the explorers as being a Narwhal, which is scientifically astounding, I don't want to hear that anymore.  Simply put I wish to be normal.  Not some curiosity that fits nowhere comfortably. 

My body betrays my understanding of who I am.  If I look in the mirror I find myself wondering what happened to me.  Who loves me?  Can I love that reflection of a person some seventeen years older than my inner voice knows me to be? How did I earn all these lines and suddenly gain weight, despite eating so well?  It is like in the night someone slipped on prosthetics, a suit if you may of what I would look like if I aged while ill.  I find myself reflected back a portrait of someone who looks like they've lived nearly two decades when really I spend every moment trying to breathe my way through another undulating wave of pain and exhaustion.

The assault on my system has been too much.  Without access to appropriate care my body has misfired and no longer functions normally. The comounding of one failure of a function upon another, has led it to become this curiosity.  And daily I am left wondering if I alone have to find the answer to my own riddle. 

When I finally move on the bed, a thirst so all encompassing overwhelms me.  It is as though I have been in the desert for days without water. My legs refuse to do as they're told, my face is red and burns with chronic sinus infection, my hair greasy as my hormones surge unhealthily, my weight would suggest my once athletic body had taken to snorting sugar when the opposite is true.  Pain is an octopus of tendrils starting with an intense migraine and working through my nervous system, so that every nerve is on fire, my teeth and jaw aches. I fear the accidental contact of neurotoxins (wrapped so alluringly in advertisers brainwashing packaging of 'lasting fresh smells' of body sprays and products) lest I stop breathing, after seizing, getting paralysed, convulsing and eventually my airways closing in an ever increasing beat of bronchial spasms.

Yet I get up every day and find my way to the lounge/day bed where I sit and half zombie, half Narwhal.  I imagine life in colour, the giggles of children running around my house as my partner mows the lawn, the windows thrown open and sunlight making patterns through the greenery that thrives in the light.  Where I am worrying if I have all the ingredients for the dinner we planned and if the kids are too hyperactive, then basking in the moment, before realising it was all a delusion. I am still on my day bed unable to move, burning up, yet suffering through the heat as my back aches from moving in a slightly different way to the way I normally move. I can't concentrate on which sensation is most pressing because there's too many.  But I feel the tears as they stream down my face soothing my burning cheeks and yet failing to lighten my heart's load.

I am Amara aka Marzi and I have ME, MCS, TVBD and so on and so forth. I can't breathe properly, tend to myself, shower myself, feed or shop for myself. My treatment is sporadic and dependant on the love of my fellow travelers. We are the watchers, the voyeurs of life and we hold each other up. I am a warrior and my light burns bright because despite it all, I am not defeated, nor will I drown but I have fallen deeply into a ditch.  So I need you to help me get out of here.  

Please weave a ladder of love by donating a strand of healing light, through donations, sharing my story, my writing, my spirit, by being another beacon in our network of watchers readying the charge to break free of the cages we were never meant to be placed in.  I am what life carved of me, an ethereal beautiful statue whose spirit is trapped inside.  Come bring your chisels and get me out of here.  If I am going to survive this, I need you to help me.  Love me and see me joyous, glowing and well.   And so it will be.  For the Narwhal thrives despite it's hunters and ignorant disbelievers.  I am a Narwhal.

"Our hope now is to help her have a life.  If you want to help please go to:

https://www.facebook.com/Aid4Amara/ or https://www.gofundme.com/a-life-for-marzi and help us get her there.

Please share widely and donate as much or as little as you can. We thank you for following her journey and supporting us and The Amara Campbell Foundation  :)

💛 Aid 4 Amara team 💛
e aid4amara@gmail.com
b lifelikethis-me.blogspot.com
v https://youtube.com/channel/UCyOCaXCd9DpN7ChzFR3UbFQ
d PayPal aid4amara@gmail.com
   Bank Westpac A Campbell
   BSB 734083 ACC 629164"

Stitched Up

Someone took an ice cream scoop and scooped out all of me. Hollowed me out and made me an empty, echoing, lonely space.

With slight of hand while busy torturing me in new and ingenius ways, upping the ante every single day I didn't notice the stitching. I recognised how trapped I was feeling but I did not notice my loss of movement.

The further I crawled inwards away from the light, away from the pain, away from the feelings of being less than, the faster they stitched. So every time I wanted to peep out and try to reach for someone, I would have to contort myself into painful positions just to squeeze my way out of the opening.

Slowly I was being cocooned in a huge sack of misery, hollowed out so my soul clattered around sadly whispering for company in an empty vessel. The hole has become so small no light or love gets in any more.

I wish I had known to bring matches or a torch. I can't see my hand in front of my face at night, the gloom of pain is so murky and thick like soup it fills the hollows and wisps out of the bag letting out little puffs of sighs.

Alone I am. No longer certain anyone can see me. I've been completely stitched up. Trapped in a bag of misery. Sighs are my only breeze. My soul has become embittered, too much time trapped alone has made me grow prickles and that which is not hollowed has puddled into soft gooey mess of over-sensitivity. All raw nerves, wrapped in a sack, still through the hole comes the pain. With the covering stripped off each nerve so that I am a huge network of beacons for the collective energy, it all brushes over my nerves and even thoughts and whispers are torturous.

Life devolved to a prickle, in a sad sack, sighing like the breeze. No one will find me. Perhaps it's best I give in and stay in the dark. But I would miss the world. So I will hibernate instead and hope to grow new skin, cover my nerves and stop feeling everything. I may love abundantly but I need to protect myself from absorbing the energy of those around me. Mine is enough. So I will re-emerge in the spring a prickle-less bundle of new born love and joy having shed all the sads and pain. Escaped and reborn, tearing at the stitches of the darkened pocket where they trapped me, emerging anew full of abundant light, joy and belief in the possibility of anything and everything.

Paper

I am flat. So flat I am paper, brittle and dry, devoid of life. Just here. Existing. I want to abundant colourful life. Alas all I do is sit here unmoving, an invisible, ordinary nothingness that has been allocated to isolation. I am just a dry old piece of paper waiting for the rubbish collection, the fussied tidy up, here where the fan blew me down to act as a mat for dust bunnies. I am a flat white nothingness a void of existence.

Fold me into a paper plane and throw me through the blue skies. Let me soar and feel the wind rush under my little paper wings. Let me feel the glory of the sun on my wings and the simple beauty of the world as I dive softly to settle into the dewy glistening grass as I am quickly surrounded by an army of insects seeking shelter and food.

Use your delicate, creative hands to fold me into a paper crane and hang me from a mobile so I dangle over your gorgeous tiny human, fat fingers and bright eyes twinkling, melodious giggles erupting as the breeze blows me in patterns above the cot.

Write your grandmother's favourite chocolate cake recipe on me in your easy drawling handwriting, the text unevenly spaced and sweetly messy. Then take me to the shop. Pull me from your cluttered darkened bag where I was wedged between your lip gloss and the keys and let me see and smell the people, the foods as you trail up the aisle hunting ingredients among the blustering chorus of activity.

Little human, fold me in your best most perfect alignment of creases, four times to shape a card and use your sweet little hands, covered in biscuit crumbs to draw art for your aunty for her birthday. Make me into a treasured message of love. Coloured crayons textured on my bare dry skin, tattoos of childhood thoughts forever etched artistry.

Artist, sketch your most favourite place on my skin, send me into a world you have created by using simple pencil and pen strokes before layering me with water colour and making me art to be stared at and adored.

Author unbridle your dreams and unblock your consciousness, let your subconscious flow and write the most profound message your soul yearns to share. Watch it flow naturally without pause across my skin, your words changing the future for those who read it.

Gasp, someone has scooped me up. This could be it. Oh please don't let it be the bin. See the beauty and infinite possibility in the blank canvas you hold casually in your hands. Oh I am not paper. I am me again. The paralysis has passed and my communion with the floor while immovable and locked in, has come unstuck. Now I am back where I started.

I will not fly, or watch over your babeling. I will not be carried to the shop with a treasured recipe etched on me, I will not carry the wishes of a little human on her aunties birthday, I will not live in artist's world or carry the words meant to change the futures of those who read me.

I am just paper again. Flat. Unnoticed. But now I am crumpled, dirty and I have several tears in my skin. There is that. I have character.

Don't Give Up

Dear Me/Amara (aka Marzi to my friends or variations of that – Marzipan, Marzipants, Marz, Marzsticles, Mara – or to my family RaRa or Aunty Ra Ra or the dreaded Tomato Jane and Fanny – as in the old ye English version of bottom - Fart Draws)

I wonder if that quote is true of humans as well as cats, that the more nicknames you have the more loved you are? I have loads. Maybe it's more that I give them out with regularity and it induces loved ones to respond in kind.

Anyway I digress, it is rather weird writing to oneself, so likely I'm hopping on a tangent as a form of distraction. But I do want to have a bit of a serious chat with you. Since I am you, well, I know what that brain and heart of yours is feeling. And you are struggling quite badly.

To be honest I don't believe you have ever had it quite so bad as you have it right now. In fact were it not our reality, I would not think it possible to even live this close to death for so long and to have not died yet. That you suffer the way you do, in the manner that you do, breaks my heart and you do yourself a disservice sometimes by being so strong. Although I am aware of you faltering now, in this moment, and that is why it is important to say these things to you.

You have to stop doing so much and distracting yourself from your reality by throwing yourself into helping others. Yes, stop, I know that's who you are in your very core and I know you can't be anyone else, but you are no good to anyone else dead, or worse still suffering even more than you are now.

I know you want so badly to be a mother, to lead a meaningful life, to write that book and to help people who are like you and can't help themselves, but how can you do and be all that if you won't stop and just first look after yourself?

I am terrified that this time you've gone too far. What does it take? You already suffer daily with seizures, Tourette's, dystonia, paralysis, risk of death from exposure to chemicals even just transference of them to your environment and now you've suffered your second minor stroke, they have found some sort of artefact in your right temporal lobe that travels into your frontal lobe (which thanks to the lack of any neurologists in your team means you are relying on the public hospital – CRINGE – to ensure they have read all relevant scans and understood the gravity of the situation and will action it appropriately) and to top it off, you've been advised you have cerebral atrophy. Then there's the low blood volume, the clogged arterial veins to the heart, your suddenly visible veins when you were never able to see them before, your inability to be upright without falling into paralysis after just minutes, your worsening dementia symptoms, frequent and innumerable dislocations of bones and joints, small and large, the cyclical vomiting syndrome, acidic blood, rashes over your vital organs, yucky overgrowth of bad bacteria in your gut, very low oxygen flow to the brain... and well really do I have to go on?

This is not the life you wanted. I know that. In the absence of life has been moments, minutes, hours, days, months and years of endless suffering. Decades. To have made it this far is, well pretty damn impressive. Most would have checked out by now. But you still laugh with your Ma and your loved ones, just not as often or not as freely as you did before. Because it's really hurting isn't it? You wanted to fill your life with meaning. To nurture life and mother a child, more if you were gifted with them and yet you lost your baby. That makes you a Mum still you know? No one can take that from you. And you wanted to help people – which you have done simply by sharing your story and starting Change for ME with Lee and the gorgeous team – it may not be all you wanted it to be but you did something and you did it while so sick you couldn't bathe yourself, that's no small achievement. I know you wanted to write too. To publish a book or books. To really tap into your soul and let out one of the gazillions of stories that travel around your brain and you have done that too just in a different way. You bare your soul in your blog. And it gives those who are not sick like your community an insight into their reality. That's something. Stop minimising it. Plus you let people see all of you in your most vulnerable state. That's no small thing.

Ever since you were a child, a tiny innocent child, you have been more like an adult. You always had a lot of emotional responsibility and you know how to be good friend and to look after others (just not yourself). And I know it kills you to not be able to participate in your friends lives the way you would if you were well. You used to juggle so many friends. And you loved them all and were in all sincerity close to them. But why do you judge yourself when no one else is judging you and you wouldn't judge them if they were sick? In fact you'd be making all the effort if you loved someone who was sick. So why do you still feel like it's your job? It's not your job. And those who have let you down or worse, been unkind and self involved are not worthy of your love or another moments thought. People are not perfect, do not worry if they are not there all the time, worry only that they are there at all and when they are they are they are good to you.

*Don't give up

 'cause you have friends
 Don't give up
 You're not the only one
 Don't give up
 No reason to be ashamed
 Don't give up
 You still have us
 Don't give up now
 We're proud of who you are
 Don't give up
 You know it's never been easy
 Don't give up
 'cause I belïeve there's the a place
 There's a place where we belong

Don't give up, you are loved. Don't give up, things will get better. Don't give up, hang onto hope. Don't give up Marz. You are a good person. You try very hard to help others. You are not perfect but you are NOT supposed to be. Yes I know you hate caps but I need you to hear me. You don't have to be perfect, stop trying so hard. No one else is perfect and you're okay with that so why do you think you have to be?  Be your beautiful imperfect self and own it.

I am begging you, please, don't give up, I need you to fight. Don't give up, because around the corner could be the answer. Don't give up, you are not alone. Don't give up, you are not on this journey alone.

I love you because despite what your inner voice says, that toxic inner dialogue of yours, you are innately good, ethical, moral and giving. Ignore the bugs that riddle your brain and taunt you with their lies and paranoia. Ignore the stroke induced doubts in your brain berating you and clouding your instincts. Listen to your soul, tune into the love in the universe, it's tangible, it will cocoon you and keep you safe, give you a soft place to land if you'd just let go and tap into the network of people who love you and their connections act like a safety net. Don't give up, I need you to survive, we have got shit to do. Please, don't give up.

More love than you can handle and squishes to crush you with

Marz

PS You may still have all you dream of. Don't give up.

NB Thanks to Jayne for dedicating this song to me and inspiring me to let this out xxx

*Song Lyrics by Herbie Hancock - 'Don't Give Up' (ft. P!nk and John Legend)

Fling your love to the stars

I have been unable to articulate to you what I am feeling. I keep writing it and feeling it is not enough, she is so beautiful my Kae, so angelic that the words I write cannot touch her or do her justice. My heart is weighed down, a clunky stuttering beat as it tries to compute the idea of what it must feel like to her. Perhaps like the tragic heroines of years gone by who walked calmly, almost sleep walking, their elegant nightgowns weighted down, stepping delicately over the slowly gurgling stream into the deeper waters where the current swept them along, their last vision of the stars before the pockets full of river rocks smoothed by the rushing water and tumbling momentum dragged them silently beneath the glassy surface.

She is my Kae, a flightless angel, whose boundless depths of love and wells of beauty of spirit always remind me of my flaws. She would hate that. Admonish me harshly for saying such a thing. For that is not how she sees others. Kae does not see what she does or is as extraordinary. She is unaware that she is so ethereal and otherworldly, she has lived in her skin her whole life, to her it is normal to be just so. But to those of us touched by the glow of being near her, she is a majestic and beloved spirit to be awed.

Kae has been trapped in the dark for a while. Years really, but there's been light let in for long stretches, and then again the shutters slam shut. Now she is taunted and maliciously harassed by pain and an exhaustion so deep and harrowing that only those who have nearly died of exhaustion can come close to understanding, and still you will not understand unless you have experienced it day after day after mind bending, soul destroying day.

Her brain is playing tricks on her, the river calls, waits until she falls into fitful dreams and coos her name in a melodious whisper, the rhythm of water gurgling over rocks mocking her with echoes of her name through the trees. The invitation taking root in her psyche when she is defenceless against it's malignant charm.

Never have I known someone so willing to selflessly step up, to surprise, to support and fight for you and most importantly, to simply be with you. Never have I known a heart so big, a love so dazzling , a well of selflessness that runs so deep there is to my knowledge no end. Kae is what we all wish we could be. She is not perfect but she is what most of us strive for.

My Kae (I say my Kae but she is not just my person, she is many people's person, her heart is that big) is going through the biggest battle of her life and unlike people with recognised illnesses, she is battling an invisible and insidious illness so extraordinarily brilliant in it's trickery that it hides from doctors while it wreaks havoc with your body, your cells, your organs, your limbs, your pain receptors, your perception, your gut, your balance, your spirit, your soul, your heart and everything that is you. How do you fight that which you cannot see and no one except those who fight beside you, a secret army of warriors, even believe it exists, spare a few special doctors who believe in that which cannot be seen or labelled.

So I am asking you to stand with us, the secret army of warriors who fight without armour, without weapons, without the support we have earned, without medals for the bravery and courage in the face of such inescapable horror day after day. We go without acknowledgement and mostly we've all grown used to relying on our battle mates as only they know what it truly feels like, apart from the few carers privvy to witnessing the extraordinary war that we battle every day like clockwork.

No I am begging you. As I have begged of you before to fight for me and others, I am begging you to help me will my darling Kae, my most gorgeous and selfless friend who is so very tired, I am begging you to help me. Will her on. Join a chorus of love and prayers and good vibes and healing meditations and send them into the universe so that she may be surrounded by your love and the light will be forced into her lungs.

Send her all the love and light you would your most beloved. Because my Kae would do it for you without a second thought. She reunited a family who were separated on other sides of the world after years apart and refused to admit she was involved, and yet our very sick and beautiful friend knew it was her and she got to see her grand babies and spend a very special Christmas with them. She forced me to see a doctor and when I had no money she forced me to take a loan from her that she refused to allow me to pay back. She sends random gifts just to amuse herself. She finds beauty in the simple and every day things and has the most creative and instinctive eye for capturing moments most of us either don't notice or take for granted. She sends thank you cards to people who think of her when she can barely lift her head, let alone see the page or muster the energy to force the pen to the page in eloquent coherent sentences. She sponsored an elephant for a group of us, a sick group of friends from all of the globe that she networked together – my twinkling, glistening orb of friends like a spider web around the world – she was the catalyst. She remembers everyone's birthday, anniversaries including the awful ones, the days of those that were lost. She is an angel. She is my angel. She is many people's angel. She is not allowed to be another angel who is has their wings bestowed upon them too soon. We will not allow them to be fitted. She will stay with us because we will fight for her.

We have too much to do. Adventures together with our friends. A commune to run. And although I may never get to have children, neither might Kae, but we will have each other and our most beloved friends and family. My love pours from my heart into this page like she were my child and I were cradling her in my arms soothing her with a lullaby, whispering to her about all the stars in the sky and how they will never ever come close to shining as bright as she does. I could not love her any more.

Please I beg of you help me keep this angel here on earth. Fling your love to the stars and wish it back to her.

NB these two beautiful photos above are Kae's work, to enjoy more of creative work, click on either photo to be taken to her gorgeous blog.

Our dear friend Cusp started this candle vigil to show Kae how much love is in the world for her, please take just a moment click on the photo and light a candle and send some love and light.

Please note, since writing this - just today - I have heard some news that Kae's spirits have lifted a little.  But I also heard today that we lost another Lyme warrior who gained her wings.  So please know, today Kae be okay, tomorrow she may not be and again and so on and so forth.  It is an arduous and awful fight and this is as pressing in this moment as it was the moment before.  Perhaps even more so as the reality hits home that we have lost one of ours and that reality is tangible, touchable and real.  Please help us fight.

♥ Love ♥

I have breathed out and released some of the bleakness that has completely overtaken my body in dark shadowy patches of intense sorrow and grief. So I am going to try to breathe in the light.

For there is so much beautiful, dazzling, uncovered treasure in my life. Despite all that ails me I have a network that stretches like a twinkling, glistening, barely visible spider web surrounding the world like a beautiful orb of criss crossing love. Perched upon it are not captured or wounded beings, but beloved connections who together knit the web and use it like a hammock to rest upon when their day gets too weary. We each rely on those connections, feeling the vibrations of love from across the globe even when we are unable to speak.

So to those who have woven the beautiful web which works as a safe place to rest my head and dream of swinging madly about in joyous tumbles, I thank you. To those who I have uncovered in the rubble and ruin of life, in the dark heavy sorrow, whose love has forged connections between me and other broken winged birds, some now angels, I adore you and whisper softly always to your faintly beating heart, “I love you, I love you, I love you”.

To my beloved healthy friends who share dazzling moments past with me, jewels in my memory that shine bright when they're tended to and polished up to focus into perfect clarity, I love you for standing by me, holding our shared jewelled memories like keepsakes, protecting them for me, keeping them in your hearts, ever present so you do not allow me to forget who I was and who I can be.

For my family, some of whom are not blood, but I have chosen to adopt in my closest network of glistening connections to share my resting space, you see both sides of me. You see my grace and strength and joy and you see the depths of my struggle and how I fight so very hard to hang on to my sanity, to war with the bugs that are forever inching closer to a coup in my brain. You keep me fighting, you fuel the fury that allows me to control the bugs and prevent them overtaking my very being. And most importantly, you love me despite the days in which I cannot summon grace, the days in which I lose the battle and the bugs take over, the days in which I am so deep in despair and desolation I drag you down. Your love is what love should be. The love of imperfect perfection, the love without conditions, the forgiving love, the understanding love, the momentarily angry but quickly forgiven love, the true and gritty messy love of truly seeing each other and accepting each other's faults love.  The real love, not the manufactured candy love we've been sold, the messy, ugly, gritty, beautifully tainted, imperfect, perfect love.

And lastly, to those of you who witness my suffering, who do not turn away, who stand by me quietly unwavering, it is you who inspires me. You who patiently waits for the moment when I can properly communicate, you who sees me despite my inability to fully fulfil myself, you who supports and loves me without conditions, you are all the best of me. All the loves of my lives.

Thank you for the love that fuels my fight.

NB please click on the image to be taken to the website of media artist who created this meme quoting Molly Friedenfeld.

Broken Winged Bird

I woke yesterday morning in the dark. Around me was an ominous and oppressive feeling of grief. It filled my lungs so quickly that I could not even scream out, I was drowning on sorrow.

There was this most awful realisation, one that I avoid contemplating too deeply most days, that the world is beyond the glass and stuck behind it, I am trapped like a wounded bird. My wings are broken and my flock has flown away. The loneliness in my heart aches so deeply I wish I could cradle it and whisper to it that you are not alone and you are loved, but it cannot hear me and it does not feel what my head is attempting to persuade it to believe.

Over the last few months I have experienced some of the hardest times in my life. And the anchors that hold me together, my friends online, my healthy friends, I have mostly been unable to manage connecting with. I am too fragile, too consumed by fighting to exist. Every single moment is a struggle, every breath a weighted heavy sigh, every step a painful uncoordinated dragging limb, every fall into paralysis another inch closer to permanency, every seizure more painful, every bronchial spasm more brain starving and every reaction to chemicals a gamble on anaphalaxys.

I have been fortunate to have medical gurus in my journey. But I am now alone on my travels. Only one left an unhealing festering sore, the doctor whom promised me a life and then told me dispassionately that I should tie up loose ends, write a will and seek out palliative care. The other doctors have been my stewards but obstacles have meant that I am now mostly without them and in this moment, this moment of grave illness, this moment when I am so terrified I cannot breathe, in this moment where my eyes leak as my body mourns the loss of all my safety nets, in this moment of utter vulnerability, I find myself alone.

There is so much to carry, so much to learn and I cannot walk nor can I find answers. My brain is unwilling. This broken winged bird has thrown herself against the glass too many times, breaking more tiny bones and finding only again and again that I cannot will the world to shape itself into how I wish it to be. In this second decade of fighting, failing and picking myself up day after day, I find the dark more and more inviting.

We travelled to the hospital not so long ago, they looked upon me as though I was nothing, they endangered my life, they withheld my medication and they ignored my pleas for help. One of the doctors, just one of the very many who looked upon me was kind, the rest ignored my very obvious, very grave, very dangerous symptoms and history with a cult like investment in the bland paradigm that allows them to behave so inappropriately within a severely deficient system.

How does a broken winged bird stuck behind the glass, drowning in sorrow and grief get help? How does she find hope that has buried itself so deep within her soul that even her eyes look haunted by the loss of it? How does she uncover a reason, even one, to keep fighting? Because she's been on an excavation, picking over the ruins of her life trying to keep the dazzling, bright and shiny moments in focus, but they have all faded to grey and resettled themselves amongst the rubble.

Banality tinged with torture, judgement for her imperfect grace, she cannot carry this load alone. But she is not alone, I wish she could hear me. I wish her heart would feel the messages of love that come from the world, through the glass, even if she can't hear them.

Broken winged bird, I wish I could promise her a better tomorrow, and yet I cannot bring myself to lie to her. So I must let her fall down, drag her broken body into a dark corner and lose herself in grief. I will not let her drown. I will help her excavate the rubble. I will fight for her despite the fact she is me and wants to give up. I won't let her. But I cannot do it alone.

So I ask of you this, please do not let me slip through your fingers. Do not let me give up. Do not turn away from my vulnerable truth. Do not let this system stand. Fight with me, fight for me, fight along side me, help me fight. 

I am not the only one. We are many, the broken winged, flightless birds, stuck behind glass, perched on the rubble and ruin of our lives. We are many who fight and flail gracelessly just to get through the most torturous of days you could ever imagine in our imperfect ways. We only wish to survive this moment and the next. We do not always do things the way you would or the way you think you would. We don't always do what you think we should. We are not you, you are not us, but we are all perfectly imperfect.

Before you judge us, imagine yourself without all the things you've come to take for granted, then imagine you are trapped, you can not turn and walk from this moment or every moment to follow for decades to come, imagine you are so incredibly lonely your eyes leak rivulets of tears that drown you in sorrow, imagine your very existence is so torturous that it seems impossible to be alive and then imagine no one sees you. Imagine yourself alone, terrified, defenceless and gravely wounded. Unless you are a broken winged bird I don't know if you can imagine such desolation, so perhaps just hear me when I say when your life is obliterated and there is no end to the war on your body, and you have no army to protect you, your flock has left you behind, you were delaying them and so they left and now you will find yourself doubting there is any reason to go on.

So please take this pledge with me so that together we might will the universe into bringing about a change for all of my fellow broken winged birds who I gently cradle in my hands as I whisper love and reassurance to their hearts, chase the haunted shadows from their eyes and gently blow hope and laughter into their lungs:

Broken winged bird, I will fight for you. Broken winged bird, I am going to promise you something, one day you'll take flight, you'll soar aloft the beautiful dazzling moments of your life that are yet to come and your heart will beat in time with the collective conscious of loved ones who you will get to touch and love and hold and laugh with. Broken winged bird, even when you hate yourself, hate your life, wonder if you should bother with fighting another day, another moment,  even then know this, you are loved. Now breathe in the light and breathe out the sorrow.

I will be with you tomorrow and all the tomorrows after that. You are not alone.

NB please click on the image to be taken to the website of Theo Aartisma who created this beautiful evocative piece.

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

Tiny human in the mist

Little by little it crept up on me. I feel as vulnerable as an innocent tiny human lost in the forest as the the light of day fades out and a dark and menacing mist curls its way towards me around the trees, enveloping the trunks at eye height. The mist is primeval, it radiates an intense and threatening presence and I feel myself panicked, my little heart beating like a bird fluttering uselessly entrapped in a too small cage, the bars painfully catching its wings.

Stuck in my throat is an aching lump. Droplets dwell in my tear ducts at the ready, as though all they need is to hear their marching orders, “Get in formation. March down her face. No that's not enough, run, gush like a waterfall, drench that face.”

My heart physically hurts. It feels engorged, overloaded with the injustice, loss and terror. The noise of the world feel like painful barbs, blows to my body and my brain, the light feels like the sun has moved closer to earth and burns my retina with the slightest sliver of yellow that stripes my floor if the curtain parts. My brain hurts, my skull feels tight around my head, the skin taut and pinched. The mist has overtaken the defenceless tiny human that lives inside me. She is trapped, like an ancient faerie tale, in a twisted land, dark, cold and alone and waiting for someone to save her.

But nobody comes. Nobody has heard her cries. Maybe not even me. I have steeled myself against her angst and terror filled psyche. Allowing myself only to pay attention to the now. This very moment. Because it's the only way I know how to get through. And yet something has broken, perhaps she broke through the mist I don't know, but now I hear her and she's been tugging on my heart, wrenching at my gut, choking my throat and welling my eyes up just trying to get me to listen to her and speak her truth.

She is me. The part of me that I don't let out because it feels like letting go to her will be impossible to recover from. I am terrified. Every day my life worsens and I don't know how to sustain the courage to keep facing the next moment, let alone tomorrow. I do not want you to think that I am going anywhere. I will not leave. But I cannot quiet the inner voice of the wise tiny human who lives in all of us. She is unfiltered and unwilling or too naïve to participate in pretence.

Sunday night I was so incredibly ill I thought I might die. And I know the difference between dying and feeling deathly, I've had my flirtations with death, the real ones, so I can differentiate. I have had a migraine for weeks, months even, but this was different. This was like my head was going to come off. And I had a vomiting and gastro bug picked up from a friend who had visited her friend in hospital – I should have thought, should have realised – never again post hospital visits. Then (and warning boys or the squeamish you may want to skip to the next paragraph now) I had my period. But not in the normal sense, this was previously a fortnightly visit that had not come to visit for months and it was doing a hell of a lot of catching up. It was all dark and all clots and all excruciating. Even the slightest loss of blood for me is dangerously weakening, this together with everything else and I had my perfect storm. Then I got chest pains like I've never experienced before. Intense and wrong. I felt wrong. So not right. So far removed from okay.

The paramedics came and in the dark comedy that is my life, my cat Tobey escaped for an adventure so Ma and my Dad were running around the cul-de-sac at three am attempting to herd him back into the house. Meanwhile the paramedics entered the house without noticing the prominent sign warning NO PERFUME. And Jock – the Northern Irishman, oh the irony – had been marinating in cheap cologne for three days. So he nearly killed, an already nearly dead me with his enormous cloud of neuro toxins. I had a massive seizure, got paralysed and followed it up with a sterling finish of an asthma attack.

Since it's Ekka time, the hospital was filled to the brim with the fluey, infectious and gunky sick people. I couldn't risk it. So I allowed my tear ducts to give the order and and my face was wet with streamed tears at the ridiculousness of the situation. Me, people like me, we need help the most. And yet I cannot get it. Thank you government. Thank you health system. You just may kill me yet.

Rochelle, the exceptionally kind paramedic who had thankfully refrained from marinating in her own perfume bath, told me I was the sickest and funniest patient she'd ever had the pleasure of meeting.

Ma and I had giggled our way to and from the toilet while I drooped about like a wilted flower on the walker, unable to control my muscles or limbs and she unable to control the walker.

Maybe it's Robin Williams death that has the tiny human in me yelling so loudly. We're not so different me and him. As far as human beings go. I hide my pain behind a layer of humour. He did the same. But I'm tired.

And interspersed between the dark had been moments of laughter and lightness, but like dashes that conjoin and become an unbroken line, the darkness has stitched itself together and the mist is merciless. So I think I will just stop fighting for today, and we will go to sleep under the mist, pull it over our heads like a blanket, rest on the forest floor and let the world work out its shit. I've got enough to deal with. But if you happen to hear my inner tiny human's cries, please don't ignore her. She was very brave to fight her way out.