The words - 8th Blog Birthday

[Image: a selection of colourful compression stockings create a figure eight. They sit on a dark brown wooden table top desperately in need of some oil.]



I've been blogging for eight years today.

I have shared 100s of 1,000s of words on this screen. I have 100s of 1,000s more in drafts. Half-formed thoughts, anger and sadness spewed onto the draft screen just to get them out. Disconnected words, floating on the screen trying to find a mate, or a 'the' or an 'and', but none are in sight. Happy words are there too, but they often seem harder. Harder to feel real and less treacle. So those posts tend to sit like a poorly written Hallmark card, waiting to share their joy with others. All the words waiting to be rounded up and directed. All the words that are no longer relevant. All the words that served a purpose. That are no longer needed, though I thank them for their service.

I go back and read earlier posts and wonder who wrote them. Who was that woman? The one that was both bursting with words and emotions. Who felt alone and scared until she found others in the same spot. Who used language that she would never now use. She knows better, she tries to do better. I read those posts and see a reflection of the newly diagnosed patients of today, and tomorrow. A desperation and relief. When you're drowning not waving, and you want one person somewhere to throw you a life preserver and bring you into the safety of your tribe.

I see a development in words and beliefs. The fickle nature of illness, of my reaction to it. Healthy reaction. Definitely unhealthy reaction. My reactions are better now. Or at least most of the time. There are times where I cock up. Again and again. Where all I want is to construct a pillow fort and hide away until the world passes. Where I hide from myself and the aspects I want to rip off and toss away. The parts that are tethered by bungee cord, bouncing back no matter how far I throw them.

I see the change in words. The flow that changed a couple of years ago when cognitive issues passed the brain fog stage to something more. Something that plagues me now as I write, or try to write. Or swear at the screen, my fingers, and my brain. What's that word? That word? You know the word? How do you describe the thing that's naught but a projection caught momentarily on billowing smoke. Hardly tangible to start with just a hint where you hope that that pieces will eventually reveal the gestalt. That hope has a poor hit rate. Maybe 2 out of 7. I walk away, come back, swear, and swear some more. At least that never fails. Swear words are carved in stone and fire from my finger tips and my tongue.

I move away from illness though in truth it never moves away from me. I've been carving out other parts of me and my world. It's slow work but I'm determined. I have written my experience with illness, with disability, with life for 8 years. It served and continues to serve it's purpose. But the frequent posting that was necessary at the beginning dwindles. I continue to write the words. About different things, thingies, thingamabobs. I write, but the pauses, the breaths are lengthened. The need isn't as strong now, although it may ramp up again. Never say never.

But the need to document my ups and downs change as I have changed. I look back and want to change words, I would write my experience differently if I was starting now. But my writing now is built on those old words. On those old thinking processes. On the therapy they provided. I want to rewrite the past, but the past is part of me, those words are part of me.

It's not only my needs and life that have changed. There are names that pop up in the comments again and again. So familiar. And then they are gone. Some who became well and moved on with life. Others who sadly are nolonger here. Regulars who disappeared but still pop in on occasion. Others who disappeared without a trace. I hope they are well and happy. I hope their disappearance meant joy and life. New batches of regulars arise and the community reshapes itself. Friends are made and laughs and commiseration are shared. People pop in and out of lives. Friends who serve a purpose, a need that sometimes we are unaware of at the time. Then they leave or we leave. You drift apart or have a big blow up. Words on a screen can be those friends as can those who read them. And just like a friend they can serve a purpose for reader and writer until they don't.

I sit here today in my pjs. The water I couldn't keep in my mouth as I tried to swallow a fist full of morning meds dampens my dressing gown. The old brain will start to kick in around 3pm if I'm lucky. That's it's usual time. The Winter sun is coming through the blinds leaving strips of sunshine on the brown carpet. Revealing the need for a long overdue vacuum. Freyja snuffles on her couch and a layer of dog hair and slobber covers my keys. Looking at the screen through one eye I pause and wait for the thought that was interrupted by a loud car outside to continue. Maybe it will or maybe it wont. Maybe it'll pop in again at 3pm or not. Maybe I'll scurry around looking for a pen in my bedroom as the thought finally finds it's way back at 11pm just as I think my brain has shut down and I can finally sleep. Maybe. Words are harder these days. But I'll keep trying.



The words have changed and so have I.

Though my tendency to ramble is definitely intact.

Eight years of good, bad, outright crap and the odd shining moment.

Happy 8th birthday little blog.

Michelle


The line I wrote above about drowning and waving always makes me think of this old 80s song. I loved Boom Crash Opera back in the day. I still do.

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)

 

And the winner of the Lazybones giveaway is......

Okay, so I may make even the simple things in life a production. I could just write some names on a couple of plain pieces of paper and close my eyes and pick one, but where is the fun, or more importantly, the pizzazz, in that. 

Instead, I chose the crafty route, complete with Thor involvement. Even surgery and constant pain are no impediment to making this little draw an event. That's what Panadeine is for! Go big or go home, that's my motto. And if you can involve feathers, pretty paper, and the world's most gorgeous Great Dane, why not. 

Unplanned, I did just realise that the dress and cardigan I am wearing are also from Lazybones. Told you I love their gear. I blame my wild hair on not being able to lift my arms to brush it yet. Really you should be impressed that I am out of my pjs and have managed a shower. That's a feat and a half at this point.

Getting my craft on.

See world's most gorgeous, and patient, Great Dane in the world. His sister in the background on the other hand, is like the Loony Tunes, Tasmanian Devil and was not allowed to participate.

He may have been a bit reluctant to give up the winning entry.

Congratulations Kendall!!!

I'll be contacting you to organise your size and delivery. I hope you enjoy your lovely Lazybones pjs.

Thanks to everyone who entered the draw for the Lazybones giveaway. And thank you for supporting the blog. It's the readers and the community over on Facebook that keep me motivated to keep slogging away at the keyboard. I really appreciate all the well wishes, prayers and good luck messages that I have received both before and after my surgery. It seems that Jeri (my pacemaker) is working a treat and excluding the post-surgery malarky, I feel better than I have in months. Amazing what having your heart beat can do. 

And a big thanks to the fabulous and friendly team at Lazybones for sponsoring my blog's 4th birthday giveaway, and making sure I was the most comfortable and fashionable patient on the ward. Thank You xx

Cheers

Michelle :)

Blog Birthday Bonanza.

Today is my blogging birthday. 4 years! Who'd a thunk it? What started as me venting a lot of frustration and clawing back my sense of self, lengthy rambling post after length rambling post, has turned into so much more. Where I was when I began and where I am now, are two very different places. 

Back in 2009 I was rather lost. It's strange looking back now at how emotionally strained things were then. Sudden and serious illness has a way of hitting you for six. It leaves you reeling, and if you're lucky holding on by the skin of your teeth. The physical symptoms are bad enough. Chest pain that leaves you gasping in pain or collapsing tends to send your fear levels skyrocketing. But the changes to your sense of self and your relationships, and issues regarding loss and grief, can be rather hard to deal with. 

These days I am in a much better frame of mind. I have ups and downs but am better equipped to deal with them. I know I've faced a lot of bad health times and come out the other side. That knowledge makes it easier to cope when I'm stuck in that periodic quagmire of pain and fear, as my symptoms escalate. Strange to think that as my health has deteriorated my ability to cope with that fact has increased exponentially. 

What started as my personal venting has become a community, a place of shared experience and support. Advocacy and awareness have emerged and the blog has become a place to give voice to the patient experience not just for myself but for many. And I love the community that has sprung up here and on Facebook. 

And to say thank you to you, my fabulous readers, 

I want to celebrate my 4th blogging birthday 

with a GIVEAWAY. 

As I've mentioned many times, I like pampering. I think it is particularly important when you are chronically ill. We are in and out of hospital. Stuck in bed or on the couch, often for long periods of time. Times like that you need to make your world, as limited as it may be, as comfortable and lovely as you can. 

Anyone who has followed me on FB for any length of time knows I love Lazybones clothes and own more than a few of their pieces. I love the mix of vintage and feminine style. I love their dresses, but am particularly enamoured with their fabulous Relax range which I wear all the time. Practical, comfy, and pretty are a good mix. And, more importantly, can make you feel better even on your worst days.

And thanks to the lovely folk at Lazybones, one lucky reader has the chance to win two of their pieces. 

Up for grabs are two items from their Relax range, shown below.

(Rosita Top in Amalfi)
100% cotton voile, I love the loose fall of the Rosita top. So light and comfortable.

(Kate pants in Cream)
I love the detail on the bottom of the Kate pants. They are 100% cotton and light and flowing. 

How to Enter:

COMPETITION IS NOW CLOSED

The competition opens as of, 9am Friday the 19th July 2013 (Australian Eastern Standard Time).

To enter simply leave a comment at the bottom of the post sharing your favourite way to pamper yourself along with an email address so I can contact you should you win.

The giveaway will close 5pm Friday the 26th July 2013, (Australian Eastern Standard Time) using the Thor Method. With the winner announced Monday the 29th. 

The lovely folk at Lazybones were also kind enough to send me a pair of their soft and light Frankie pjs in Enna just in time for my surgery. If I have to be stuck in hospital I can now at least do it in style.

Thanks Lazybones!

Cheers
Michelle :)

Angus and Julia Stone, Mango Tree (2009)

And the Winners Are........

Ah giveaways, they do give me much pleasure. And paper cuts.

Sadly, I could not find my bag of feathers to make the entries. And really you just can't have a giveaway without feathers. Or dogs.

So of course I made Thor wear my pink feather boa whilst he selected the winners. And he was stoked.

He did enjoy rubbing his face on the entries in a weirdly overly enthusiastic way that left us all a little uncomfortable.

But eventually started picking winners despite his feathery embarressment.

 Though he was unaware he was also wearing the entries for a while there. He's not overly sharp.

 So I stupidly decided to get Freyja involved. Unfortunately, she is the energiser bunny of dogs.

 And lost the plot thanks to the excitement of falling entries.

 And decided that manic was order of the day.

Leaving me covered in these. 

 But she did manage to choose some winners.

And without further ado. And because I now need a nanna nap to recover. The Winners.

The winner of Prize 1: The MOR Cosmetics gift pack is....

Kelley@magnetoboltoo, congrats Kelley!!!!

The winner of Prize 2: Ode to Dysautonomia which had the gorgeous accessories and oils is...

 Hope Filled Living. Congrats!!!!!

The winner of Prize 3: the lovely photographic prints by Kyli Wolfson is....

 Cyndi Ogden. Congratulations Cyndi!!!!!

The winners of Prize 4: One of 5, 2 packs of Lindt Excellence A Touch of Seat Salt, are...

Kathleen Eakins!!!!

 Kim@Frogpondsrock!!!!

 RudeKitiKatt!!!!

 Katrina Horsfall!!!

 Coppelia!!!!

YAY. Congratulations to all the winners. Send your address to rustyhoe@livingwithbob.com and I'll post out your winnings as soon as possible so you can pamper up!

Thanks to everyone who entered. Thanks also to the generous sponsors of the giveaway who made this all possible. MOR Cosmetics, Lindt Australia, Claire Barnier, Tennille Pooley, Vickie Isaacs, and Kyli Wolfson.

Don't forget to check out all the fabulous pampering ideas over here.

And mostly I just want to say a huge thank you to everyone who has supported me and my ramblings over the past three years despite consistently poor grammatical skills, an inability to use 'to' 'too' and 'two' appropriately, and frequent use of inappropriate humour. It's a rough road at times but your support has meant the world.

Cheers
Michelle :)
And just because it's so appropriate in so many ways. Hot Chocolate's, Everyone's a Winner (1978)