Seven

The coffee machine squeals. Like Pavlov’s dog a strong desire for another cup of black liquid ripples through my body and I weigh up the hour and the likelihood I’ll be up all night. Not to mention the likely need to pee in the communal loo out the back of the shop. Always a pot luck adventure. Will it be bearable? Or more likely, will it resemble a scene out of a Tarantino film. Not to mention that accessible loos are rare as hens teeth. I can see the rising cloud of steam in my mind’s eye and caffeine sings it’s siren song. I throw caution to the wind and suck up my petulant bladder issues, embrace my doom and order another. To my right the sweet smell of citrus tart rises. All is well with the world. 

I’m the only customer seated at long line of otherwise empty, square, faux-marble tables. We’ve lived in this town for two and half years now and only really discovered this local bakery a few months ago. Drawn by a sudden inexplicable need for a classic meat pie which sent us in search of a proper country bakery. And here I am all these months later hoping that a change of scenery, a long black and a baked treat can prompt some coherent words out of my sluggish brain. My blog is seven years old today and I refuse to not at least attempt a post to commemorate its birth.

It’s been a rocky road this year and words haven’t come easily. But I’m on the upswing (I type before frantically reaching for the closest piece of wood). An upswing that is becoming more apparent as the days creep by. I’m getting better at pacing. At self care. At time. All things that were never my strong points long before illness and disability came calling. I still beat myself up about my failures and inefficiencies. I still lie awake trying to recall the important things that I know I have forgotten. I am still my worst enemy in many ways. But seven years since I first began tapping away on a keyboard, transferring the circumlocutions and tangential thoughts that raced thorough my mind into glyphs on a screen, most of which resembled those things called sentences and paragraphs, I am still here taping away. Hoping that the process of transference will somehow clarify my sense of self and work through the emotions that come along with a life of illness.

Next month is ten years since I first ended up in the Emergency Department at work. A decade working through not only the physical, but the emotional, social and psychological aspects of health are not really one I want to commemorate. But three years from that day I managed to pump out my first post. It wasn’t much just a basic, This is Dysautonomia, post. Pretty bland and not one that warms the cockles of my heart with sentimental pride. My next post was in truth my first. One that I had worked on encouraged by my counselor in the months proceeding my decision to blog. It was a great purging. Not my best writing but it was raw and honest and my heart burst all over the page desperate to remove the burden of those proceeding three years. To be able to breath again. Even for a moment. It was a sweet release. Until I shared those words on the public domain, they’d remained my secret. They remained my silence and my shame. Then I set them free. I stood naked in the middle of a crowded room and waited for the ridicule I told myself was a certainty. Instead I found a community of people who understood. The silence and shame so many felt was theirs alone, was shared. Baring my truth was empowering and addictive.

I can look back at my words and track the ups and downs of the last seven years. Life is catalogued.  All seeming more vital given how poor my memory these days. I look back and see the times I found the laughter and the times when it was all too much. I see all the stages of grief played out time and again. Acceptance raises it’s head more frequently these days than in the beginning. Though even it is beaten into submission by anger and fear, denial and much pouting with annoying regularity. It’s all there warts and all. The truth of my experience. I look back and see where I emerged from hospital under 50kgs and looking more wraith than human being. I see the sunken eyes and read my own words talking about fear for the future. Fear for the unknown that was taking over my body. Trying to balance living with uncertainty and an unbearable shadow dominating each and every day. Life became complex and I like to think I negotiated it well for the most part, but at times it’s been a complete balls up. I have failed in being the perfect patient, through self-sabotage (denial is a wonderful thing) and through the regular frailties of simply being human.

I want to say I know the secrets. That I can lay out the seven secrets to living well with illness, one spiffy item for each year of blogging. But the truth is I don’t think there is a set list. There are some big overarching ideas, but for the most part we all wing it. We aren’t a homogenous group to which you can apply a nice neat list. I listened to a podcast on Frame of Reference today and it reminded me of that individuality. We all come from different backgrounds and carry the baggage of our unique pasts. Even growing up with two siblings I know my recollections of our youth are very different. We interpreted and processed the events of our lives with an eight year gap in brain development and unique personalities and interactions with friends and family. All three of us have fiery tempers and are independent to fault, but beyond that our lives are incredibly different and the sum of our life experiences over the past 43 and 51 years respectively, have made us who we are today.

And so it is with illness. I see it even in the forums where two patients will see the same doctor, receive the same information but walk out feeling that they have had very different interactions. We walk into every encounter in the medical system with a set frame of reference that helps to determine our path from that time. We walk in carrying ideas about illness and disabiltiy, self-identity, and religion. We walk in with differing social and familial support, balanced against the social and familial responsibilities we all bare. Introvert or extrovert. In light of that it can be hard to say what the tricks are to making it through the world of chronic illness and living a full and happy life.

I do know that we can do it. I see the resilience in the friends I have made over the last seven years. I see it in my own words on this blog. I need to read them more often. To remind myself of where I’ve been and where I’m going. This life of mine hasn’t turned out as I once expected, but it is a good life none the less. I read a great piece somewhere, at some point in time, my befuddled memory wont tell me where, that life is flux. It is change. And that is what the last seven years of blogging and ten years of illness have taught me. (Well held me down and screamed in my face with relentless regularity may be more accurate.) The flux and change are natural even if they haven’t always felt that way. My life isn’t like other lives, but then again neither is anyone else’s. We all tread our own paths, even all those other 43-year-old, Australian women with green hair living with Dysautonomia. We share snippets of each others lives, but our unique parts are what determine our life experience and outlook. And equally what make us fabulous.

I can say there have been bonuses along the way. Friends I’ve made and strength I’ve found. There is a whole community of amazing people out there in the ether that I would never have been lucky enough to meet if I’d never become ill. My outlook on life that was really in it’s infancy back in 2006 has been honed and refined. Blogging has become an act of defiance. Breaking free of the lessons of my youth that said that illness was shameful and weak and that you should never speak up and share. The importance, and more than that, the power of one’s voice is one thing I have come to embrace. There are still those who don’t understand why I choose to share. There are those who mock social media. But for myself and others like me, embracing social media has become empowering. We don’t have to wait on the gatekeepers to allow us to speak. We don’t have to ask permission or sanitize our lives to be palatable to the powers that be. The power of our voices can lead to conflict as existing power structures are challenged. Not just in direct means through activism and advocacy, but by means of their growing irrelevance in an age where we side-step them entirely. We create our own communities. We share our stories and no longer wait for someone else to tell us about our experience. In the time it takes a monolithic media outlet to write an op ed on the passing fad of social media, our voices have been heard all over the world a thousand times over and we grow in strength.

Illness has been freeing. I have learnt more about myself over the last 10 years than I have in any other period of life. I care less for the opinions of others, be it what a woman over a certain age should wear, or how I should react to illness. If I listened to the words of those who talk about approaching illness in a dignified manner, I’d never have written a word. And I’d be the poorer for it. Such opinions seek to silence us least we make them uncomfortable. Because having to hear the reality of our experience is so challenging. Illness is messy. But in hiding the truth we do a disservice to all those who find themselves thrown into the new world of broken and decaying bodies. Illness is hard. I have cried myself to sleep more times than I can count. I’ve had to give myself enemas and puked and passed out in foul public toilets. But I have also had a life of joy and love. I am disabled and I’m happy. I live my life and embrace my weirdness. These are the stories that need to be shared. Not the dichotomized sanitized inspirational meme version of illness and disability, nor the pity worthy, “I’d rather be dead than live like that”, alternative. Life is a roller coaster of good, bad, and mind numbingly boring ordinary. It’s pretty damn beautiful when you look at it.

So I sit here seven years on, 43, bright emerald hair, haphazard clothing choices in my wheelchair tapping away at a keyboard in front of a fuscia wall in a small bakery in country Australia, realizing that life isn’t that bad and no matter what I’ll be okay. And so will you, dear reader. No matter what life or illness throws at you, you’ll be okay.

“Those first days and months are hard and scary and lonely. But you'll make it through. You think you wont. You'll want to throw in the towel and scream "No more!", but you'll make it out the otherside. And you'll do it again and again. I can't predict how your symptoms will pan out overtime. We are all very individual. Some will get better, some will have symptoms that wax and wane, some will have a chronic but stable process and some, like myself, will progress. Your body may still be broken, but your ability to deal with it, will get better.  You will find your stride. You will find the things and people in your life that matter and make you happy.  You'll be able to breathe,even when it's bad. It wont be easy but you'll find that your ability to cope and your acceptance will grow. Your spirit will heal and you'll find direction you never imagined. You are filled with possibilities and, if you give yourself permission, you'll find them.Being ill can give you a freedom to explore yourself in ways you never thought possible. Life with Dysautonomia or any chronic illness, is a life changed, but sometimes that change is a wonderful thing....

.... Just know, it gets better. Not in the Disneyesque sense of shooting stars and rainbow-farting unicorns. But in the real world sense  where you're battered and bruised but you're stronger than you thought and more at ease with your life. It takes time, and there will be tears and disappointment and setbacks.But one day you'll turn around and realise that somehow you made it through, and no matter what your body is or isn't doing, you're okay.”
                 
(I realised all this back in 2012, but sometimes I need to remind myself of own words)

That is what seven years of processing my life, my thoughts and emotions, though this blog have given me. So I’ll keep tapping away. Purging my brain. Quality and quantity waxing and waning, breathing in time to the pulse of my body and life. 

Thank you to all who keep reading. You are the rockstars. And your support, encouragement and friendship are what make every hard wraught letter worth it.

Michelle

We float

Take life as it comes

We float

Take life as it comes

(We Float, PJ Harvey)

 

MIA

[Image: a woman kneels on brown carpet, forehead touching the ground in the yoga pose known as Child's Pose or Balasana which helps her gastric pain. Light shines from the window behind her, reaching a chair covered in a bright red throw rug.]



Eight minutes and six seconds. That's when my exhausted body said hell no. I lay on my yoga mat listening to Adriene, from Yoga with Adriene instructing me to massage my feet. A panting blob lying on green rubber matting not even capable of a proper savasana. Autumn sun was a lovely idea. The birds were chirping, the chooks scratching away in their yard. Even the workmen that have been at my neighbours for weeks were silent. Freyja came over and nuzzled my pasty face before deciding to take a poo less than a metre from my head.

And in that moment, the last couple of months were summed up neatly. Short lived joy followed by a large foetid mustard-coloured dog nard from which your slow and exhausted body struggles to escape.

I'm not quite sure what happened. The usual illness malarky was muddling along, when suddenly it all went pear-shaped eventually ending in a long overdue ED visit and a protracted recovery phase that still feels in its infancy.

I've tried repeatedly to take a deep breath and step out into the world only to be hit hard with payback. I've dressed up and gone to a cafe only to be forced to watch Mr Grumpy eat while I swallowed down vomit and ate antiemetics. Sit out with my chooks and recovery sleep is measured in hours. Yesterday I went out for 20 minutes, saw some cows in the paddocks next to our housing estate and today I woke up struggling to breathe or lift my head from the pillow.

Dip my toe in the world. Tell myself I can push through. And my saggy, stretch-marked, arse is where I keep on landing. Payback comes in metric fuck tonnes these days. And it can no longer be ignored. My droll husband tells me at least I look sick now, but even he finding little in that line amusing.

I have a collection of vintage cutlery. In amongst it all I have several tiny silver, salt and mustard spoons. Smaller than my little finger. My spoons have been in short supply of late and those I do have are reminiscent of those tiny salt and mustard spoons. So I've hermited. Built myself a pillow fort and tried to simply ride it out. When existing is hard the rest of the world has to be put aside to focus on trying to heal. And of late it's been pretty bloody hard.

I've tried to put pen to paper or fingers to keyboard and realised there was nothing. My brain too flummoxed to conjure up a coherent thought let alone hold that thought, coordinate fingers and get it onto a screen or piece of A4. Reading has equally been beyond me. And I have been bereft. Two of my greatest pleasures gone and my world far more claustrophobic.

I have known that I have cognitive issues for some time, more than just regular old brainfog. I had a brainSPECT scan last year that confirmed moderate impairment in the blood flow to my left temporal lobe, and mild to my right. I haven't fully processed what it all means, but it's effects are clear at present. My reserves are piss poor and now documented in a series of rainbow coloured scans. Add in worsening health and it would seem those reserves have been wiped out.

To respond to emails or messages is difficult in the extreme. Primarily because even reading them is exhausting. It's a weird place to be. That which was once my strength is muted. I have to believe it'll come back when this patch has passed. Losing my words isn't an option I want to contemplate.

This is the most I have written in over two months. It's been a struggle. But it's better than the usual staring at the screen, perplexed and frustrated, impotent hands poised over the keyboard, that has marked the last couple of months. So I'm taking it as a cautious sign.

The pain in my arms and wrists and the exhaustion that have come from these few words are worth it just to see them sitting there before me. They aren't perfect. But they exist. A small piece of me out there in the world again.

Michelle

I wanted to say thank you to everyone who has sent emails and messages of support and concern. I haven't been able to respond and sometimes even read bar the first line or two, but those messages are much appreciated. I'm not really on social media at the moment except for a bit of Instagram where deep cogitations are not really required. I'm not sure when I'll get back on properly. I need to be ruthless in my energy usage to try and get on top of this again.

"Come on my friend

Drink to good times

Golden wishes

To your health and mine."

(PJ Harvey, You Come Through. 2004)

Come Away With Me: Beach musings.

A photo posted by Michelle Roger (@michelle_roger) on Dec 30, 2015 at 2:36am PST

[Image: A woman walks barefoot along the beach with her walking stick. Her head is down and she is wearing a large blue hat, pink floral dress and green cardigan.]

The parade of children on new bikes begins. Pink is a favourite. Closely followed by silver. A line of training wheels clacking along the slightly melted bitumen. The more experienced zoom past their brothers and sisters to do an effortless 180 where Beachcomber meets Meridian. Zooming back again to see if their younger kin had worked out the wobbling combination of trepidation and exhilaration. The populace, both holiday fly-ins and locals, walk by trailing towels and dogs. Brown and black, big and small, hairy and sleek. The more exuberant leading their walk-enablers. The rest walking contentedly next to their owners. I look for the rotund charcoal staffy we met on Christmas day. His body wriggling with excitement as he tried to squeeze under the gate to meet our very confused Great Dane. His gyrations made the Christmas bell on his collar jingle and gold tinsel glitter in the sun. And brought a smile to our faces. Boxing day has arrived and so has the procession past the window.

I watch them file past slowly, backed by azure skies and the green-grey tea tree and bottle brush. Their languid pace courtesy of the magic that is holiday time and the weight of Christmas overindulgence. My feet hang over the arm of the soft blue recliner. To tired to bother with the mechanism to raise the footrest. The blinds clatter in the breeze but I hardly notice. Closed eyes and muscles turned to putty over proceeding days my main focus. The sea breeze blows through the open door and flows through the house carrying salty notes and the sound of the waves.

We’re back at the beach. A friend has loaned us his house again. We were here for Christmas last year. For much needed respite and healing after a really rough year. And now we're back for a booster shot. The beach less than a 100m from the front gate means even a quick trip to watch the waves or drink a glass of wine as the full moon rises and the sun sets, is easy. We've transitioned smoothly from suburbia to beach life as if this has always been our norm.

Vera has traversed the path from beach house to dunes numerous times. Both packhorse and mode of transport. The crunch as she rolls testament to her time on the foreshore. She and I have bounced down steps and up to sink in deep soft sand. Husband and offspring content to drag and push at need. Or when it was all to hard I was carried or supported with a now oxidised and unfoldable Francesca. She too carries a new tone in her black tubing as we walk slowly down the driveway. A rush of sand and the tinkle of small bits of shell and larger granules with every movement. Lift, crunch and rustle. The sands of time falling in step with my dragging feet. Slowed and liquid the time of the sand and sea. Wild salt on southern winds preserving time for later need.

There's an ease in my heart that I haven't felt in a long while. Something about the salty sea air draws the ache from my soul. Pulls it like salt does the bitter water from cut eggplant. Draws the pain and fear, the exhaustion and melancholy. The, enough. Pulls it slow and sure as I am hypnotised into quiescence. The call of the gull overhead, or twitter of the blue headed wrens flitting on the grass just outside the window, whisper soothing words. The wind carries the bitterness from my skin. And I am refreshed once more.

Beach time is thinking time. It's easy to process the world while I'm there. Clarity is mine in a way it hasn't been for a lot of the proceeding year.

And now we are home.

Three articles have appeared in my timeline since I returned. And each seem to have arrived at the right time. They talk of ease, a move from well to powerful and authenticity. 

Ease is something I rediscovered on the sands. It’s something that I have on and off though I've never really named it before. Yet name aside I have been striving for it everyday. My body continues to be obstreperous. I sit here today sporting a hand brace after a fall. Everything I eat hurts and makes me want to vomit. The bone pain in my legs is back. And my bowels have closed for business. The list continues. And yet I'm at ease. Mentally, emotionally, and spiritually I am at ease. For the first time in a long time.

“…when I repeat the phrase, ‘may I live with ease’ during meditation, to me it also has another meaning – may I be at ease with my life, regardless of the circumstances. May I be at ease with the inevitable ups and downs of my existence, instead of constantly struggling against ‘what is’. This is not passive, or resigned – in fact, being at ease with our lives involves a very active engagement with reality, as opposed to clinging onto some idealised fantasy of how life should be…” (Anja Tanhane, Holiday Favourites - Living with Ease)

This is how I've been trying to live. My trek to the beach involved being wheeled from the house, down the road to the top of the dunes. My legs too weak to make the distance and my body unable to tolerate the expenditure of energy or time upright. I was unceremoniously carried up and down dunes and over soft sand. The only person on the beach with walking stick and wheelchair. Held in waves by my husband so I could feel the pull of the water and taste the spray on my lips. I could do nothing alone. Independence long gone. Such forays were curtailed by my recalcitrant body. I was nauseous and exhausted. In pain and unsteady. But the ease persisted. The weight of the last few months on it’s way out to the cold reaches of Bass Straight. Drawn as my body tumbled in the waves and taken by the undertow, to menace me no more.

O'Dwyer talks about ageing powerfully rather than well or gracefully. Her points regard choice and control, and much can be transferred to a life with chronic illness. 

"....there are no guarantees in life. Ageing is a crapshoot...But you can load the dice in your favour." (Dr Siobhan O'Dwyer, How to age powerfully - and what that means?)

A photo posted by Michelle Roger (@michelle_roger) on Dec 28, 2015 at 1:03am PST

[Image: A woman in red and white bathers and a large blue hat lies on a blue and white floral throw on a beach. Her trusty wheelchair sits behind her a clear blue sky overhead.]

I may be ill. But I can control many aspects of my life through the choices I make. We can have health and life in the context of illness. I can choose to be powerful by looking at all aspects of my life. I have gone back to Pilates. I can do very minimal exercises and only when lying down. My muscles refuse to coordinate and I have trouble initiating movements. Much of my energy expenditure is in trying to rope them in to complete a movement. But I'm there and I'm doing it all the same. I'm trying to be better with my diet. Following the guidelines from my dietician to manage my defunct digestive system. I am making sure I do the little things that bring me joy, like chatting to my chickens or preparing my succulent pups for planting. I am back to scheduling mindfulness and simple yoga. There is a powerfulness in that. I will never have health as most know it, but I can maximise what I do have. 

I found my power again at the beach. I managed the basics of my yoga routine on a towel in the front room of the house. I watched the families walking buy and the yukkas rattling in the wind while I melted down into my savasana. My gaze soft and my breaths long and deep. The clean smell of salt on the wind through the flyscreens. Swirling overhead dispensing calm and clarity. I sat on the front porch and completed my mindfulness exercises. And I allowed myself to breath in my surrounds, while sipping on a forbidden wine or two, free of self-recriminations.

“…Knowing what those fears are, being vulnerable and facing them head on with your authenticity, will enable you to stand up and go in the direction that you desire…” (Helen Edwards, Why Authenticity is Vital to Your Happiness)

Being authentic doesn't please everyone and it shouldn't. I know some see me as a little eccentric. But there is something freeing in simply being yourself. There were stares at the beach. Our daily familial procession of wheelchairs and lifting, and unenthused Great Dane. As I walked on the soft sand at the waters edge cane at hand I received the double takes and whispers. Good or bad I don’t know. I was too busy having fun. When I wore bright red bathers with my pasty white body I didn't care. When I received a comment on Instagram “You look so stunning with a cane” I did a double take. What does that mean? That I shouldn't? That it's a surprise that someone may look okay and be disabled. That I don’t look disabled and ill? That in being myself I don’t fit in the established ‘look of disability/illness’ criteria? It was strange to think that my authentic self was somehow a surprise. Being ill has stripped away a lot of the shoulds. I don’t have time for that malarky. I do have time for me. And in making that time I have more to give. I’ll wear a mini in my wheelchair, I’ll sport blue hair and wear red high heels. I’ll watch scifi and horror movies and run far from rom coms. I’ll belt out Nina Simone's I want a little Sugar in my Bowl, and sing Prodigy’s Firestarter at the top of my lungs. I’ll put a disco ball in my bright red chook house and have a FUBAR sign on my desk. I’ll be “one of those lefty feminists” as I was called last year. I’ll simply be me.

A photo posted by Michelle Roger (@michelle_roger) on Dec 27, 2015 at 1:07am PST

[Image: A wheelchair with an eldest son's legs sits on the beach at sunset. The sand is golden and a blue and white floral throw sits in front of the chair.]

I’ll embrace me and my ease. I’ll be powerful and authentic. I’ll sit on an empty beach at sunset and watch the light fade and the moon rise with a glass of cheap sav blanc in a squat glass tumbler from a Belgian airline. I’ll collect more shells and pale drift wood. I’ll watch the sand swirl in the bottom of the glass and breathe it all in. I’ll breathe in me for the first time in a long time. And I’ll feel the lightness of being that comes from time away and the magic of sand, sea and wind.

Michelle

Not exactly a beach song, but Norah's languid style feels perfect. My family call her Boring Jones and always paid me out for listening to her. When the boys were little I if they saw me running a bath and putting my candles up, clear indicator I was about to shut the door and relax for an hour, I'd get the chorus of "Are you going to listen to Boring Jones, Mum?" followed by great guffaws of laughter because they thought they were so so funny.

When the world is falling freshen up your flamingoes and listen to Ben Lee.

New symptoms, medication side-effects, and a cry on the bathroom tiles. That has been the last few days. Well, weeks in truth. And exhaustion. I can't forget exhaustion, even if I wanted. It's perched on my shoulder weighing me down, be it in bed, or on the couch, or lying on the grass outside.

Shut down. My body. My brain. The world. All of it.

My recalcitrant body is winning at the moment. I'm not sure we're even playing the same game anymore. All the old rules no longer seem to work. So more tests, more symptoms, more tests, more....ad infinitum.

Words don't come. Thoughts jumble, tumble, and fall away.

Pieces fall. And no one picks them up. I'm not sure that they can.

I sat in the garden and let the new Spring sun fall on my face. I looked over at Natasha and Boris, my garden flamingoes. They were faded and battered. Yellowed, pastel pink enamel, looking used and sad.

I focused on the faded colours and couldn't let them go.

Paint was bought.

Beaks and legs were covered in Glad Wrap and sticky tape.

Two layers of pink enamel and they were alive once more.

It's a small act in the big scheme of things. But it's something. I slept after. I lay down in between coats. But when I look out in the backyard today and glimpse their shiny pink feathers it fans a little spark in my heart. Keeps it alive for another day.

It's the small things that make it okay when the world is pulling you under and your reserves are spent.

#lookingup flamingo in the evening.

Michelle

In my tired state I couldn't find a clip to accompany the Ben Lee song, Everything is OK, from his new album Love is the Great Rebellion, but I like it a lot. It's simple and beautiful. There's a central couple of lines that are stuck in my head at the moment.  

(Here's a live stream version)

Everything is okay,

even when it's not

even when it's not. 

The Lie of Giving Up and Falling Apart.

"Giving up is easy" says the meme up above.

"Falling apart" is bad.

"True strength" is only when you don't give up or fall apart.

This is a clear and persistent belief in our society.

Having fallen apart on more than one occasion I am clearly weak. I have failed the true strength test.

And yet here I am still kicking on. Loser that I am.

I understand why people post memes like this. I understand that for some they are indeed inspirational. But the simplistic inspirational narrative in these kind of memes irritate the hell out of me.

What exactly is wrong with falling apart? And what exactly constitutes falling apart?

There are times in life that things reach crisis point and you fall apart. You can't cope. You cry and withdraw. Shake your fists at the sky and scream about the injustice of life. There are times when it feels like the tide of human existence is going to swamp you and all you can do is feel despair. You aren't falling apart you are experiencing real emotions and behavioural reactions to a stressful life.

When I see memes like the one above I think of the countless emails I receive from fellow patients who are overwhelmed not only by their physical symptoms and social and psychological stressors associated with that, but also the overwhelming sense that they are failing or doing illness wrong because they can't hold it together.

Illness is stress. Chronic illness often means that stress will never fully go away. People aren't falling apart when their stress levels reach critical levels. They aren't giving up when they voice that stress and can't hold it all together. They are human beings, experiencing real and valid emotions to a prolonged highly stressful situation. We should not be jumping on them with judgements about giving up and the evil of falling apart, but offering them support, a place to voice their fears and sadness, and direction to appropriate mental health groups to help them navigate the complex and stressful world of chronic illness.

Should we add yet another burden to the list, pretend it's all okay and hold it all together, at least in the public view?

As  I've written many times on this blog, giving voice to the negative aspects of illness, not coping every second of every day, and admitting you are overwhelmed is not giving up. In a way it requires far more courage to admit the truth of falling apart in face of a society that values the perfect presentation of a person with illness who always "holds it together."

Inspirational sick person narratives are rife.

Flawed, complex sick person narratives are jumped on and wiped away with relentless regularity.

Admit a flaw and you are giving up.

Admit that it's hard and you are giving up.

Admit you can't hold it all together all the time and you are giving up.

Giving up by admitting it's hard and it falls apart, isn't the easy option. A false face is the easy option. No one questions the perpetually,perky smile, I've got it all under control, narrative, because that's what the world wants to hear. To salve their own fears. Sometimes to salve our own.

If we truly want to promote mental health we need to move away from judgemental narratives about giving up and that falling apart is the worst thing you can do. If we want people to seek help we must be open about the times it all comes crashing down, and that we don't actually have to be the popular version of strong ALL the time.

I've fallen apart many times in my life, not just in the last nine years of illness. Because I am human, not some super woman. I have strength. A strength which is true to me, even if others can't see it.

And for every single person who sends me emails, or is sitting at home right now reading this who feels like they are falling apart, or are afraid others will judge them if they voice their struggle, please know you aren't abnormal, you aren't doing illness wrong, you are stuck in a shitty and incredible hard and stressful situation right now and responding in a totally human way, but there is help available and there are others out here in the ether who get it and understand.

There is strength in giving voice to the struggle.

Screw the lie of giving up and falling apart.

You are not alone.

Michelle

It's okay to ask for help.

Here are some starter services in Australia. Most countries will have similar programs.

Australian Psychological Society (has a find a psychologist function)
Kids Helpline
Headspace
Lifeline
Beyond Blue
Suicide Line

This may be one of my favourite First Aid Kit lines:

I always thought you'd be here

But shit gets fucked up and people just disappear

In the case of chronic illness shit gets fucked up and life is hard. We don't have to pretend it's all sunshine and lollipops. 

Once Upon a Time, in a Land Far Far Away, There was a Girl who still Believed in Restorative Sleep.

A photo posted by Michelle Roger (@michelle_roger) on Jun 8, 2015 at 6:54pm PDT

Restorative sleep. Yeah. Sure. I had it once. Maybe. Back when Shakira's hips didn't lie. Back when Dexter was putting up his first piece of plastic sheeting. Back when standing in line at the post office wasn't a death defying act.

Slowly open my eyes in the darkened bedroom and the oppressive weight of my body falls. Coma sleep, followed by feeling completely trashed. Three days of migraine, meds and darkness equals an unavoidable deep sleep as exhaustion finally claims it's due. No restoration. Just the emergency breaker in my body's fuse box. A flick of the switch as muscle, bone and viscera are overloaded once more.

Joints protest and muscle screams. Post-flare sleeps are motionless. Motionless equals pain. From hips to back to....

Slow movements. Sharp intake of breath. No choice but to move. Like the inevitable ripping off of a bandaid, joints must bend and rotate. A full bladder doesn't allow for denial and avoidance. Get it over quickly. Well as quickly as my slackened limbs will move. The two for one special. Weakness born of immobility, drags out the pain. Slow. Slower. Snail's pace.

Upright. Breathe. Wait while the screaming visceral reaction to sitting up passes. Rub my feet on the mat. Bright pieces of sari bound and stitched to make a rag rug. An impulse buy on one of my rare outings. An eye roll from Mr Grumpy, but resignation that the rainbow colours and the Come in Michelle, sale sign, already had me planning its placement in our house. The texture under my feet is soothing. Rough enough that the spotty sensation of my soles can feel it roll and compress. Breathe and roll. Rub and breath. Push and squish. And breath. Just breathe.

Weary and maudlin. Repeat the process to stand.

Boy and Bear fills the air as the shower starts

Whoa, and I've been through Your garden
And I've been to Your grave
Lordy may
When I come to my end some day
Will I find myself sitting at some golden gate
Or will it all just float away
Yeah, my end some day

The melody fills in the aching cavern of my skull. Mumble and slur. A word here a word there. A syllable maybe mixed with a half-hearted hum.

garden….float away....someday.

The blast of the shower muffles all.

Slough it off. Slough it all off. Three days of pain and sweat. Rancid, to float down the drain.

Sitting on the floor of the shower is the safe option. Even the chair not worth the risk. Sit on the tiles and let the water fall. Watch it bounce and shatter where it hits pale skin and ceramic floor. Different sound on different texture. Turn my wrist and watch the change of the flow. The rivers of hot water pouring. First this way then that. Minute ripples of muscle and tendon that flex under the skin move the the water sharply left and right. Course altered courtesy of the smallest movement. Or shudder. Or convulse.

Trace the song words on the glass. Rest my head on my knees. The song of the water changes as wet hair covers ears. Wisps of oats and soap rise from warm skin. Wash it off. Wash it all off, to just float away.

Time passes in the white noise of the shower. Songs pass as thought is replaced wholly by the sensation of water on skin. Focus on the water. To the exclusion of all. Stir. Unfold just enough to turn of the water and pour my body onto the bath mat. Cleansed. The sour smell of pain and pharmaceuticals gone. Soft cold breezes rise from the tiles. Sharpening dulled brain and body.

No restoration. But a MacGyvering.

A piece of gaffer tape. A wad of chewing gum and a paper clip. Clean skin and soft clothes. To patch me up enough to function. To hold the pieces together. The funk of illness finally removed allowing me to pretend for a while.

The pain, the nausea, the ugh,

                                                     all dulled.

Open the door. Squint against the sharp morning light. The familiar buzz of the coffee machine. Breath in the caffeine as it pours. Fill the lungs. Let the mug warm my hands. A grey furred head rests on my hip. A green blanket and velvet pillows piled high, await on the couch. Silence and soft song.

This is how restoration finally begins.

Michelle

Getting through

Just get through it.

That's what I thought on Wednesday. And what I thought last week. And yesterday. And likely next week. Just get through it. Expect the payback. The recovery. The preparation for the next step. The next event. The next appointment. Get through that. Then payback, then....

I'm stuck in the loop.

The calm time. The inbetween time. The time where I can just sit and breathe. The time where I can process things. Or fart around doing nothing. Or everything. Doing something I want. Without worry that it'll be too much and I wont be recovered and prepared enough for the next event. That time is missing.

Chronic illness is a fine balancing act. And I'm fumbling.

My recovery time is longer. My preparations often interrupted by flares of symptoms that seemingly have no rhyme or reason.

A few of my doctors have mentioned that I have the crappy honour of becoming a complex chronic patient where my body is so off kilter it just keeps throwing things in for kicks. Those kicks aren't huge but enough to make life that little bit harder. That drain just a little bit more of my already reduced energy. The pain that radiates from my pacemaker pocket and wakes me, stabbing into my chest and down into my breast one of the latest. A rare complication. More common in women but rare all the same. Like my surel nerve biopsy, the nerves that were cut so my heart could keep beating, howl their displeasure and rage against my body. Something else to put in the "live with it" pile. Pain everlasting, poorly managed, ever increasing, and ever exhausting.

The concern face as my heart throws up a new problem. An unexpected problem. More tests. More fiddling. More uncertainty.

And so the breathing space that was once there between events and flares is merging. My resources fewer. My prioritising even more ruthless. There are things that must be done and the rest doesn't even get consideration.

The emails pile up, just like the messages.

Phone calls not returned.

Appointments are scrutinised and prioritised.

Which body part is most in need of tending?

Which appointment will give me the most bang for my buck?

And outside that, life.

Children, husbands, families and households.

The needs that cannot be abdicated. The needs that trump my own. The needs that I am also fumbling.

In the midst of it all an appointment that is easy. So easy it doesn't register until after. When I'm sitting in the car and realise that it was both fruitful and pleasant. There was no antagonism. No fight to get what I needed. I sat with a collection of referrals, for specialists and tests. Break through meds, and understanding. I was too busy getting through, so used to expecting a fight, that I fail to register the gift that is a doctor who gets it.

I sometimes wonder what it must be like for a doctor to be landed a patient like me. Complex and weird. Only there when the going gets bad. Only there when the problem is a mess. So busy getting through it that I wait too long. So busy getting through it, so used to expecting to beg and argue, I didn't give her the thanks she deserved.

I need to focus again. To not just get through. To move beyond ruthless existence. I think I might use up some of my precious resources for a quick note of thanks. A few words to say thank you, I noticed, it meant something. It was an easy spot in the midst of hard.

And then I'll start prioritising again. Shave off this need, cut off that. Distill it all and keep saying No, until it all becomes manageable again.

Because it will. It always does. And I'll rejoice once more in the breath-filled moments.

Michelle

I've been listening to a lot of Sara Watkins of late and this song in particular. Short and simple with perfect lyrics. (I've written about it before here  when I needed a reminder that I always drag myself back.)

Maybe someday this pain will be useful.

Little sunbeam after the storm.

A photo posted by Michelle Roger (@michelle_roger) on Dec 29, 2014 at 12:39am PST

A while back I found myself running (okay lurching and stumbling, grabbing walls and chairs) into my bedroom to grab a post it and a pencil. I had an overwhelming need to write down a quick quote:

"Maybe someday this pain will be useful"

It comes from the video below by Jennifer Pastiloff (I also like her "I will not hide my shit nor will I hide my magnificence." No one should ever have to hide themselves.) A fellow blogger and all round awesome person Chris from pixie.c.d. had shared it on her timeline. In my morning pre-coffee haze I slumped on the couch and pressed play. I've never heard of Jennifer Pastiloff before, and she's a little full on for my laid back Aussie sensibilities, but there were moments in the video where I thought, "sing it sister." 

Maybe someday this pain will be useful.

I'm not one for the woo woo inspirational stuff. The vast majority of which I find superficial, unattainable, nails on a chalkboard. (This of course could partly be attributed to the sheer volume of perky memes I've been sent since I became ill. Just so folk know "Healthy mind, healthy body" is not the kind of meme you should send someone with a progressive genetic condition. You may be sent a sarcastic naked mole rat pic or something similar if you do.) But this one line stood out as I was watching.

What if everything I go through, all the shit, all the pain and the fear and the disappointment and frustration, all of it, is useful?

I don't go in for the everything has meaning line. Or that everything happens for a reason. Sometimes shit happens. No rhyme. No reason. It just happens. But I do sometimes think we can choose to find a use for what happens. And in a sense I think this is where blogging and writing fit.

While I would gladly have a do over for the last 8 nearly 9 years, or take a miracle cure like that! There has been good in there. I have met some of the most amazing people I now call friend thanks to this defunct body of mine. In particular, I met my best friend Kerri for who I will forever be grateful. But beyond that, in expressing my journey (there has to be a better word, the whole journey has been coopted by a lot of woo woo, but its all I can think of at this hour) it has given a voice and safe space to others.

In sharing the changes with my body and the way I feel about it warts and all, it has allowed others to express their own experiences, or simply feel not alone. The power of not feeling alone is incredible. It normalises an incredibly abnormal experience. It's a soothing balm for the spirit and relieves a burden whose bulk you often don't realise until it is gone.

In sharing the hurts, tears and doubts it lets others also express their own pain. A pain that is often hidden behind the permanently perky mind set that says you must always put on a brave face. And should you dare to say "it's hard" there is always someone who'll pipe up with a quick "well at least it's not...." or "it could be worse" to silence the speaker lest they make them feel uncomfortable.

In sharing the small victories and the laughs it lets others know that they too can have those victories and joys. In being ridiculous in the face of illness it can give others permission to also be ridiculous (a necessity to survive this life.)

All of this pain, all of the vomit and the medications and procedures and frustrations are worth it if in the sharing it can help one other person in some corner of the world.

Maybe someday this pain will be useful.

Maybe it already is.

Michelle

I will not hide my shit nor will I hide my magnificence. What are you hiding about yourself? Are you willing to be vulnerable? Quite often it's the things we try and hide that draw people to us. Are you afraid of "being found out"? Post all your thoughts below and feel free to share.I love you. You're enough.Xo www.jenniferpastiloff.com
Posted by Jennifer Pastiloff on Friday, 17 April 2015

Take up your spade

(Sometimes you have to find a spot to focus when upside down and inside out.)

Every now and then you stumble over a song and the visceral hit can't be ignored. This is one of those songs. One of those times where life and the planets align, and suddenly every word and every note line up as the perfect salve to the moment.  

I think I need it as my morning song. Especially after nights like last night, that involved a tear on my pillow and trying to fumble quietly in the dark for pain meds, bent in two, and shaking from the stabbing in my stomach. That shit doesn't ever get easier. But you get through it somehow.

I had an ER doctor look horrified when I explained my daily abdominal pain last year. He couldn't believe that I was sitting in front of him smiling (I may have been helped by endone at that point) and talking about it so matter of factly. He looked from me to David and back again, and I was struck by how abnormal my normal had become. You adjust. It's weird but you just do. Sure my normal isn't like other normals but it's just life. You make the most of the cards you're dealt. I don't know if there's a magical formula to get there. I know I slip back and forth with dealing. But somehow I always drag myself back. Battered and bruised but back in the world.

Sometimes it's simply about believing that there are other days and other nights. And that you can drag one foot in front of another. Sometimes its a song that pops up in your life at just the right moment.

Having listened to many of her songs over the last couple of days I am well and truly a Sara Watkins fan. I am late to the party given she's been around for years. Or maybe I came to the party at just the right moment for me.

Enjoy.

Michelle

Low High

Earlier this year I was super excited to head to my first concert in years. I haven't seen a live music act since becoming ill in 2006. I had tickets to see Scissors Sisters way back in 2007, but had to give them up as I was spending more time bent over my toilet or communing with the floorboards than upright. Then this year, which has been my year of worsening health and also the odd, "Screw it!" moment, I decided I was going to a concert.

I wrote about my excitement. Ella Hooper had put out a song The Red Shoes and it seemed kismet had finally gotten off it's arse and said "Here you go Michelle. After a year of shite and nearly a decade of crap you get to have some fun." In all fairness to kismet I may have misheard or misinterpreted it's words. My cognitive function can be a little poor on occasion thanks to that whole poor blood flow thing.

But here was a song about red shoes, put out by an artist I've followed for years, my shoes ended up in her fan video for the song, Mr Grumpy bought tickets, the venue was happy to help me negotiate the stairs, Ella even chatted on Facebook, and the single launch fell exactly on the one year anniversary of getting my pacemaker, Jeri, put in. All I needed was a choir of angels and nymphs throwing rose petals before me to fill in the moment to perfection.

(Artsy photo of The Red Shoes ticket in my red shoes.)

Then I stupidly declared to the world I was telling my body, "Screw you, body. I'm going to a concert. You can't stop me!" And like the petulant child it is, it raised my "screw you" with a "screw you and the horse you rode in on."

A few days before we were supposed to be heading to Melbourne my symptoms started to flare. I put on my blinkers and started some very peppy self-talk.  But things got worse, and worse. So on the day where I was supposed to be in Melbourne seeing Ella Hopper and bopping along to The Red Shoes, I was stuck in Emergency.

(Screw you body, I'm still wearing my red shoes! Even if they are squishy slippers)

I think I held it together for about the first hour, but I am not ashamed to admit there may have been tears. And for about a week after I rocked some fine ennui. Good ole Mr Grumpy did offer to still drive me to Melbourne to catch the last hour or so if I wanted, but a three hour car trip after an afternoon and early evening spent in Emergency was not exactly the best move. So I chose a pity party for one instead.

Cue a few months later and Mr Grumpy spots that Ella Hooper's album launch for In Tongues is happening in Melbourne on the 6th of December. Unbeknownst to me Mr Grumpy contacted the venue to see if they are wheelchair friendly. Sadly no, but they are very happy to accommodate me and hoik me up the stairs so I can go. After some discussion about me not wanting to get my hopes up and not wanting to waste cash again, Mr Grumpy had his own "Screw it!" moment and I am now the proud owner of two tickets to the Melbourne album launch!

(My nanna self is usually putting on her pjs and getting ready for bed at 9pm.)

So next week I am making my way to the city again. Praying to every known deity that my body will hold it together so that finally I can see Ella  Hooper sing The Red Shoes while I dance badly in my chair and sing along. No idea how long I'll last being late at night and the Summer heat, but Screw It! I'm going to give it a go.

I'm going to carpe the crap out of that diem!

Michelle

Update:

We made it! We stayed in a hotel that looked like it would fit in an episode of CSI and I am grateful there was no blue light. I frocked up. We drove into the city. Mr Grumpy carried me up the steep stairs of the Ding Dong lounge while the lovely staff did everything to accommodate us including reserving a booth up front so I could sit and see (kinda good as I ended up having to put my legs up and take extra meds as the nausea and shakes began.) I had a forbidden glass of wine and finally met the lovely Ella Hooper.The show was amazing and I had the latest night out in years. Afterwards we zoomed around the streets of Melbourne in the rain, bouncing across cobblestones and tram tracks in my wheelchair and had a ball. I was wiped out for about a week after but as you can see from the last photo I lay in bed with Freyja by the bed and listened to Ella's album.

Sometimes it really is a case of if at first you don't succeed and end up in a hospital ED, you just need to try try again, and medicate yourself to the enth degree and have a husband determined to make your dream come true.

Low High seemed the perfect pick off the new album. Amidst all the highs and lows of late I'm focusing on loving and living this life I have.

 

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $4,300, keep donating and hopefully we can reach $10,000 (ends Dec 9th 2014).

Boadicea in comfy pjs and slippers.

I wrote this a while ago but it still holds true for me. 

Whilst in recovery mode I thought I'd put it on a photo of my pasty feet and one of my pairs sparkly Dorothy slippers. 

My mantra for living with Chronic Illness.

It's coming up to the end of my year long fundraising for Dysautonomia research. Three weeks to go (Dec 9th is the end). So time is running out to donate. Make sure you head over and donate or share with others who may be interested. Huge thank you to all those who have already given. The video below is me explaining a little about my life with Dysautonomia and why we need more money for research. 



Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $3,800, keep donating and hopefully we can reach $10,000.