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.)

Independence, wherefore art thou?

Today someone is coming to the house.

To take me out.

A stranger.

A stranger is coming to take me out.

For an outing.

An outing.

I don't know what I think about it.

Well I do.

I also wonder how many expletives it takes to be kicked off Google? I think I could do it.

It feels like someone is reaching deep down into all that is me, and ripping it to shreds. Big chunks of my being, pulled out to rest in bloody hands.  A tad melodramatic I know. But it does.



I'm not comfortable with any part of it. I feel my stomach churning as I type. I can hear the "But Michelles...." already. And honestly, the "But Michelle...." folk can stick it. Two days ago I turned 42 and today someone is coming to take me on an outing.

Because I can't go out alone.

Because I am reliant on others to leave my house.

Because it's just another marker for the level of shit my body is immersed in.

Because I'm angry and shitty and tired.

Because.

I can go anywhere I like. The local shopping center keeps being brought up. Because heading to Target with a stranger is up there with internal exams, on the fun scale.

And small talk. Small talk with a stranger. Might as well break out the speculum.

I want to go to the gallery. I don't want to talk. I don't want to interact. I want to look at art at my own pace.

I want to not go arse up with a stranger and have to deal with the crap that goes with it.

I want to go and not have to explain why I'm in the chair.

I want to pretend that I'm there alone. I want to pretend I am still independent.

But a stranger is coming to take me out on an outing, because I can't do it alone.

And I am reminded

                                just how fucked my body is.

Michelle

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

Sick Fatigue

A couple of weeks ago I sat in a cafe with Mr Grumpy and ate a croissant. It was toasted and stuffed with cheese and ham. Delicious, but not allowed. Everything in it was on my No list, but I had it anyway. A moments pathetic, although rather tasty, defiance. Mr Grumpy just looked at me when I said what I wanted and we sat in silence as I ate. He was well aware that I was not in the mood for conversation. And I was beyond even attempting a pretence of civility. It wasn't him or my dietary restrictions. I was just beyond over things. Another scan, another wait. All after another disappointing specialist appointment. I was just tired. Being ill is exhausting. Being chronically ill is a continual state of exhaustion that reaches beyond the physical.

I am in a bit of a holding pattern at present. I continue to be ill. I continue to deteriorate. I continue to have no real clue as to why. Apart from my original medication and my pacemaker I have had little in the way of concrete wins. I am luckier than many others in that I have belief on my side. My doctors believe that I am unwell. Before becoming ill I had no true understanding of just what power that holds. For many in similar situations no one believes them. There doctors palm them off as having some nebulous form of mental illness and go no further. I at least have doctors who acknowledge I am unwell and there is a cause somewhere. Just what that cause may be, continues to remains elusive. A hint here or a hint there, but none of the pieces fully fit. I listen to the words at each appointment, "It's looking more CNS related" before I am sent on my way. I am monitored far more than I am treated. And get to shell out both cash and limited energy for the privilege.

I am at the point where lots of little symptoms crop up. In isolation they are easy to deal with. Combined, it is exhausting and I feel I am once more at the plate spinning stage. Trying to maintain my game face when confronted with it on a daily basis becomes a chore. I flitter around doing small meaningless tasks. Some I complete. Some I don't. The things I love like writing, are harder as my body strives simply to move forward, let alone trying to also string words together. Even the flippancy of social media is trying and beyond me. I float on the periphery of the superficial and the real worlds. But am simply too tired to engage.

Last night the pain in my abdomen became so severe I dropped to the floor as my bp plummeted in response. Only to lie curled in child's pose on the carpet while my family had dinner and Mr Grumpy waited for me to be ready to accept his steadying hands to move. I lay there breathing through the worst of the pain, eyeing the dog fur on the carpet and feeling miserable. Not just the pain and the joy of breathing in dog dander, but the knowing that at present my doctors are either unconcerned or have run out of ideas. This is how so many exist and I can't help but wonder at the hidden populations who live just like me everyday. On the odd time I come clean and lay it out for my doctors they are horrified and I am showered with pity. Then sent on my way with nothing resolved. My parallel universe of illness intersects with the regular world in jagged moments before diverging again and again.

Some days I want to simply crawl out of my skin. I want to shout at the injustice. But mostly I lie defeated and tried. So so tried. The weakness in my muscles spikes at times and I can't lift myself. I wake in the morning and my face muscles refuse to move as I want. My gait is disjointed and I lurch from wall to door frame to bench to couch. Wait for the meds. Wait for my body. Wait. Mornings a waste. A small respite in the afternoon. An evening of exhaustion. Times like these it is hard to keep the wolves at bay. Especially when I know tomorrow will be the same.

I exist in a medical purgatory. Never quite breaking free. Just trying to make it through. Periodically the planets align and I can function for a while. I can get up and potter. Do things I enjoy rather than focussing every shred of energy in simply existing. But I work for it. As hard as any job. I work on it every single day. Existing is a 24 hour, 7 day a week endeavour. And I've been on the job without a RDO for what is now more than 8 years. Walk a day in my shoes. How I hate that phrase. A day is a doddle. There's a special burden that comes from time. From months and years of unrelenting illness. Some days I can push it to the back of my mind. But of late the stagnation in my treatment options lends itself to a sense of suffocation.

I withdraw into myself. A defence mechanism I have employed since childhood. I withdraw and put up the barricades. Part of me wants to hide but part of me still wants to hold onto a tangible link to the outside. I put out feelers into the world before retreat is sounded again. Too much. Too soon. Every sound. Every contact. Too much. Strained nerves make me irritable. I snap and then beat myself up for the snap. My irritation peaks and I become directionless. So the shutters come down and I stew in a swamp of amorphous displeasure and irritation at life. Until something in the back of my mind tells me to kick my feet and wave my hands for help. Both my own and from others.

After I'd finished my croissant I asked Mr Grumpy if we could just go sit by the lake for a while. I needed the air, the trees, the sound of the water and the birds. I needed to be anywhere but where I was right at that moment. Claustrophobia courtesy of simply being in the world. The sounds, the space, the people and the noise. Noise in my head and noise in my being. He suggested the beach instead. So we went home gathered some towels, our youngest and Freyja and set off. Each kilometre and each tree wiped away a layer of burden. Bit by bit open paddocks and bushland took another slice of the exhaustion. I watched as the red gums changed to scrub and twisted banksia and lush flood plain to sandy soils. And finally sand dunes and salt scrub. The long blue/grey stretch of the Bass Strait meeting the clear blue skies overhead.

Near empty beach. The sound of waves on the shore. The smell of salt and the detritus of the sea strewn across the sand bar. Warm sands and gull calls. I stood in the water and let the waves wash over my feet. Sinking deeper in the sands. I stood there until I could stand no more. Only then was I happy to ask for help and a steadying arm to get me back to our encampment higher up the beach. Only then did I feel the tightening in my chest and head decrease. Only then did I feel I could unbend my shoulders and breathe.

He knows me well that husband of mine. And he tends my wounds with a precision built of years and tenderness. Wash my wounds with salty water and lay them bare to clean winds and the last rays of the sun.

I am so tired of being ill. But for now, my salt and sand-filled stockings and the new additions to my shell collection give me respite. I run my hand over the sea-smoothed skin of the drift wood we brought home and knock more sand out of the line of holes at the base of my walking stick. Remnants and reminders.

Now I can pick up and go again.

Next appointment.

Next test.

Next.

Michelle

I love this song (well 99% of her songs) from PJ Harvey. All about losing your way and getting overwhelmed and finding your way back.

We'll float

Take life as it comes

We'll float 

Take life as it comes.

I want my child to see the beauty of this place. To walk from the mountains, to the sea.

Those words come from the Fat Freddy's Drop song Hope. It came up on my playlist today as I lay in bed, my body up to it's usual shenanigans. My right arm sprained and protesting my latest attempt to exercise. Grievances heard loud and clear as I tried to comb my hair, or lift my coffee. Frustrations abound. Listening to words of hope whilst cursing my body. Listening to words of hope while reading an anonymous email telling me that by speaking of hardship, I have none. I am charged as having given up and without hope, simply because I dared to say sometimes it's hard. Rather than stuffing it down to be more palatable to others. Not the first and not the last. Because there are those who have an overwhelming need to tell you how you're doing it wrong. And the positive that is hope, becomes twisted and used like a sledge-hammer, by those who don't understand that different doesn't instantly mean wrong.



Hope and I have a contentious relationship. At least the shiny plastic version that is shoved down my throat on a regular basis. My nails on a chalkboard.

Saccharine sweet hope. The hope you MUST have. The hope you SHOULD have. Held down, the syrupy hope poured down your throat until you swallow.

Become ill and you are beaten over the head with hope. The hope of others. The hope that must look a certain way. Sound a certain way. The hope that negates reality. The hope that wears blinkers. The hope that feels fake when I touch it. The MUST and the SHOULD that cause me to dig in my heels and baulk at any attempt to force it upon me. 

Every interaction and the Hope Card is pulled out. To suppose I have none. To be tossed in my face at the first sign that my infirmities might be offensive to others. To silence.

A hope forged of perfection. Perfect sickie towing the party line. Deviate at your own risk.

Hope it's a four letter word. At least the faux variety we are sold.

Snake oil wrapped in fancy words and flashing signs. Promises and panaceas. Fools gold. Diluted and reduced to a buzzword. Until it is barely recognizable and becomes unachievable.




Hope floats.

Bobs and weaves amongst crashing waves and the calmest seas.

A living thing. Exhale inhale. I can feel it inside me. Forged on an anvil and with a gentle caress.

The first hint of a cool breeze moving across my skin.. Promising change after a long hot day.

My hope is mine.

Composed of a hope of laughter and hope of love. Of hope for compassion. A hope of reality. A hope of dreams. A hope to endure. A hope for strength.

A hope no longer required if I allow myself to see that so much of what I want and desire already resides within me.

Hope that I will laugh? Or choose laughter?

Hope for joy? Or choose to find it?

Hope for strength? Or finally see that I have had it all along?  

Hope for better days? Or find the beauty in this moment?

Hope that my children learn the lesson? Or teach them myself?

Hope and I dodge and weave. Come together and fly apart. Evolve and change. We sit quietly together and find common ground. It is rough around the edges, a little worn and weary. But we agree it has a place. We mark the lines. And agree to the importance of its presence.

It is quiet.

It is patient.

It is practical and workaday.

And it fits me to a T.

My hope may not look like others' hope,

                                             but it is mine all the same.

Michelle

Side-effects

"It's on my sheet," he apologised, holding out the A4 list of his appointments again. The fourth time since he arrived. And with each showing and each of his apologies I started to feel a wee bit more like a shit person.

I mumbled a pathetic, "If it's on your sheet, it's on your sheet." And started to pull my frayed nerves together to formulate an apology of my own before he practically ran to get away from the scary lady at number 48.

When I asked my youngest if I had really been that bad, he gave me his best, No shit, Sherlock look, complete with an "Ah, yeah!"

And I died a little inside.

I was an arsehole. I knew it. My youngest knew it. The tradie definitely knew it. Given Freya's furtive glance as I let her back inside even she, my ever adoring companion, knew it.

His crime?

He'd turned up two hours early. Way before I was expecting him. In the morning. Before medications. And sustenance. And showers. And my general working up to people. And I had ripped him a new one.

Well not directly.

I had to hurry to my room to get dressed. And throw Freyja outside. Who had picked up on my less than calm demeanor and taken out a full glass of cordial on the couch with her frantic tail wagging. And in my bedroom as I stumbled around, trying to find a bra and clothes while breathing and standing and taking my meds, I may have dropped a few choice expletives. In our poorly insulated and echoing house.

Because I have inherited a fiery temper and a low threshold for anything these days when I am feeling really poorly or, on that day, in pain.

And because I know I had agreed to a post-lunchtime appointment as I rarely agree to a morning one since I became ill. Had it written in my diary and had planned my usual morning needs to that time. But it was clearly written for a different time on his sheet.

And because I am officially a shit person.

My life has become a tightly wound lesson in logistics. Planning is everything. And spontaneity has become anathema.  And woe betide any who should mess with that tightly wound, holding-it-together-by-my-fingernails, plan. Like a young tradie with a different time on his sheet.

And I acted like a shit person.

If I know something is coming up I start planning. I know how long it takes for my medications to kick in, how long I need to recover after a shower or putting on my  compression stockings. I plan rest the day before and the day of. I psych myself up  to use a set amount of my daily functioning and schedule rest and recovery for the rest of that day. I think about foods to tide me over. That I can potentially stomach enough at that time to keep my blood sugar up without also making me vomit. In between all that I have to negotiate the unexpected symptoms. Is this the morning I wake up with a mouth full of vomit, so must negotiate oppressive nausea whilst also putting on a social face? Do I need heating or cooling? Can I walk to the door or need my cane? Will I need to apologise as I make a sudden departure to the loo to throw up mid sentence? Will my blood pressure to stay up while I clench and unclench the muscles in my legs to remain standing. The mental agility and strength needed to keep my shit together long enough for a visit is hard to explain. The exhaustion of just getting ready can be beyond overwhelming. Especially when you are forced to do it everyday for years on end.

But he didn't know any of that. And shouldn't have to know any of that.

And I am an arsehole.

When he came back a week later for another job I apologised.

Repeatedly.

Because the reasons don't matter.

And because I acted like a complete arse.


Side-effects of long term illness may include:

Exhaustion
World weariness
Becoming jaded
Holding a permanent level of stress you don't always realise
Tightly wound emotional hair trigger
Inability to deal with the unexpected, and

Being a first class arsehole to an innocent tradie. 

Michelle

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

10 Most Popular Posts for 2014

(source)

As 2014 comes to a close I thought I'd link up my Top 10 most popular posts for the year. They range from deeply personal posts to issues relating to health care, disability and chronic illness. A little something for everyone.

Thanks to everyone who has read, commented or shared my posts over the last year. And a huge thanks to all who have sent their support and good wishes through what has been a bit of a rough year healthwise. Here's to a better year ahead for all. xx


1. When being a woman is an impediment to medical care: Dysautonomia

"A quick review of patient support networks reveal a clear pattern of attributing physiological symptoms to a mental health diagnosis. And as many of the reported comments reveal, being female is a clear factor in this leap to a psychological aetiology. Comments range from being “too young”, or “too pretty”. That a “boyfriend”, “husband”, or “baby” would cure them. Other terms from “Working Women's Syndrome” to “Bored Housewife” are used. And diagnoses such as Anxiety and Depression are doled out with alarming regularity, and frequently without referral to an appropriate professional for official diagnosis or treatment."

2. Be quiet little disabled person. You're making me uncomfortable.

"Is she really surprised that PwD have a voice and can use it? That we have minds and can formulate our own opinions? That we know how to use social media? And that we are no longer content to sit back and accept the ableist behaviour of the wider community. No matter who the perpetrator or the level of their transgression?

Her reaction plays into the idea that PwD should sit back impotently and wait for others to speak and do for us. It plays into the idea that we should sit there smiling and grateful for the crumbs and pats on the head doled upon us by much of the wider community. It plays into the idea that we are incapable of having our own voice."

3. This is NOT funny.

"The idea that the only viable illness is one that lends itself to clear external markers, such as loss of hair or tubes and bandages, is so incredibly incorrect, as to make it laughable, especially given that figures for so called invisible illnesses are as high as 1 in 2 in some countries. The idea that disability is only seen in the use of a wheelchair, something unfortunately perpetuated by the most commonly used symbol for disability found on blue and white stickers worldwide, excludes millions of people in Australia alone (currently estimates are that approximately 20% of the population are living with some form of disability, only a small percentage of those are permanently in wheelchairs). The idea that only those with paralysis use wheelchairs is equally damaging to a large percentage of users who, like myself, can walk very short distances but are frequently unable to stand or walk for any substantial distance, or depending on the day, unable even to walk one or two steps."

4. Letting it go.

"I am grateful every day for those who show they care, online and in real life. For those core people who make me feel loved and safe. Who hold my hand when I need it, instead of expecting me to hold theirs because my illness is a burden to them. For those who offer their concern and care and don't tell me how much of an imposition or hardship it has been for them. For those who know what I deal with and how I deal with it, and don't flit in only to tell me how to manage my illness that they nothing about, before flitting out again. For those who give me dedicated time rather than the scraps left over from their busy lives."

5. Just to clarify.

"We see joy where you see nothing.
We find humour where you see darkness.
We smile, because our spirits shine.
Many of us thrive with illness.

I say with rather than despite, because it is part of us we can't deny, but it is not all of us. It doesn't define us. And it doesn't deserve the energy required to live despite it's presence."

6. Prove it.

"I am tired of others asking people to prove their disability. To prove that what they experience is real. That it is legitimate. I am tired that there is a continuing pervasive idea that only certain very visible issues are genuine or valid disabilities. I am over people who think that they have an instinctive right to judge the legitimacy of a person's disability. I am over people who have absolutely no expertise and no idea who suddenly feel they are experts in the field of disability and have developed some sort of superpower that enables them to identify disability at a single glance."

7. Without your health, you have nothing.

"Illness doesn't care. It doesn't care if you run 10km everyday. It doesn't care if you only eat organic. Or have never smoked or consumed alcohol. It doesn't care if you help old ladies across the street or kick kittens for fun. Good, bad or indifferent. Illness happens. Disability happens. Life happens. Genes can kick in, or accidents can occur. Yet we have so demonised the idea of illness that we fear and judge it."

8. Saturday night.

"She is sitting, bent in half on the hard toilet lid. Chest pressed to knees. The lights above beat down on the tangle of black hair on the back of her head. Pain-sweat sticks random hairs to the nape of her neck. She catches her breath with each heightened burst of pain. Cold smooth tiles anchor her feet to reality. She holds tightly onto that feeling, focussing on the texture below her heals. Overly controlled breathing, a futile attempt to control the situation. She continues to fight long after the battle is lost. Pain, misery, and lost dignity are thick in the air."

9. Stupid.

"Old familiar shoes. The story of my life. So often I fall back to what I've always done. Even when it hasn't worked. Even when it has ended up leaving me worst for wear. Since becoming ill I have teetered between trying to forge a new and more positive way of doing things and my old anally retentive, must do everything, all the time, push, push, push, way. That old way has served me well over the years. It's very familiar and very comfortable. In some ways it has worked over the last 8 years as well. It led me to a diagnosis, a good team of doctors and treatment. In many ways it has kept me going through the hardest times. But it has also been destructive in many ways."

10. It's the lack of a permit NOT that they don't 'appear' disabled.

"Here we are again with sloppy journalism that is representative of the views of the wider community. Back to the limited idea that all true disabilities are visible. The corollary of such a view is that if you can't see it, it's not a real disability.

There is a pervasive idea in the wider community that:
a) True disability is visible, most commonly involving a wheelchair.
b) That the illegal use of parking permits is rife.
c) That it is easy to obtain a parking permit.

a + b + c = people without a wheelchair, who look well, are frauds and should be called out/ridiculed/abused."

Happy New Year to all.

May 2015 bring love, joy 

and happiness.

Michelle

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.

Today I cried.

Ugly cried.

I lay on the tiles in the bathroom and I cried. I ate a bowl of silken, baked custard and let the tears roll down my cheeks. Then I cried some more.

Tears.

I let them fall.

One after the other.

Until they were done.

Until I was done.

There wasn't a single cause. Nothing that was particularly worse or different. It was everything and nothing. All rolled into one.

Because sometimes life is too much.

Because sometimes my body is too much.

Because there is no weakness in tears, or the admission of their existence.

Tears.

A pressure valve released.

And now.

I can collect myself and keep going. And I know,

I'll be okay.

Michelle

In my mind.

(Why yes. I did get made up as a zombie and do a photoshoot.)

Who am I now? That's something I've been mulling over. I want to be many things. Many of them are reliant on being a fully able, fully healthy person, with unlimited funds. Those are the wants I bring out when I want to beat myself up. The unattainable. The ridiculous. The ones that I only want because I can't have them.

Self-flagellation and I are firm friends. Even when we haven't seen each other for months or years, when we get together it's just like old times. As if nary a day had passed. We take up where we left off and joke about all the ways I've failed or cocked up in life.

In my more sanguine moments I realise that I am being a dick, which goes right against my "don't be a dick" policy on how to live life. Somehow being a dick to myself is okay, because it's me.

Don't be a dick, Michelle.

Say it 10 times and repeat at need. 

Times like that I need to play this song (on loop and loud),



and list off all the ways I am pretty damn fabulous. Because I am. I just need to see it and embrace it.

Since being sick I've thrown off a lot of the usual constraints society places on us. Life's too short and energy too scarce, to waste it on filling a role designed by others. Coming from a pretty conservative family it's taken a lot of years, and soul-searching, to shake off the behavioural shackles I was wrapped in at birth. It's been a little step here and a little step there, to find the pieces of me. To feel okay in my own skin, not the skin everyone else says I should wear. To realise my opinions are mine, and they are okay. That I don't have to spout the ones I was taught as I grew up. That I can speak my mind. That I don't have to apologise for being me.

At 41, am I still rebelling, or is it simply that I don't give a crap anymore? A little bit of both probably. I definitely don't have all my shit together, as evidenced by many of my latest posts. But I'm telling myself that is okay, and slowly I am believing it.

I realise as I type this my circle of friends and family, although small in number, represent those who take me as I am. Those who read the blog are the same. They are people who like me for me, in all my mixed up, slightly left of centre, contradictory glory, not despite it. They don't tolerate my difference, they are here because they like it. And that is a gift. One for which I am very grateful.

So thank you Amanda Palmer for making this song (and Map of Tasmania, because that never fails to crack me up. Whoever thought that little Australian phrase would make it's way into any song? NSFW for those who haven't seen the clip before.)

I need to start believing, that when I wipe away the crap I cover myself with and polish up the picture of me,

I am exactly the person I want to be.

Michelle

I've included all the lyrics below rather than just selecting a few, because all of them sing to me and I think they'll sing to many others.

In My Mind

Amanda Palmer 

In my mind
In a future five years from now
I'm one hundred and twenty pounds
And I never get hung over
Because I will be the picture of discipline
Never minding what state I'm in
And I will be someone I admire
And it's funny how I imagined
That I would be that person now
But it does not seem to have happened
Maybe I've just forgotten how to see
That I am not exactly the person that I thought I'd be

And in my mind
In the faraway here and now
I've become in control somehow
And I never lose my wallet
Because I will be the picture of discipline
Never fucking up anything
And I'll be a good defensive driver
And it's funny how I imagined
That I would be that person now
But it does not seem to have happened
Maybe I've just forgotten how to see
That I'll never be the person that I thought I'd be

And in my mind
When I'm old I am beautiful
Planting tulips and vegetables
Which I will mindfully watch over
Not like me now
I'm so busy with everything
That I don't look at anything
But I'm sure I'll look when I am older
And it's funny how I imagined
That I could be that person now
But that's not what I want
But that's what I wanted
And I'd be giving up somehow
How strange to see
That I don't wanna be the person that I want to be

And in my mind
I imagine so many things
Things that aren't really happening
And when they put me in the ground
I'll start pounding the lid
Saying I haven't finished yet
I still have a tattoo to get
That says I'm living in the moment
And it's funny how I imagined
That I could win this, win this fight
But maybe it isn't all that funny
That I've been fighting all my life
But maybe I have to think it's funny
If I wanna live before I die
And maybe it's funniest of all
To think I'll die before I actually see
That I am exactly the person that I want to be

Fuck yes
I am exactly the person that I want to be

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 $2,000, keep donating and hopefully we can reach $10,000.

Living Colour

I watched Amelie today. The colours, the vibrancy, the whimsy. The focus on the joy of small details. I could quote it by now, in a very shoddy French accent. Watching Amelie again, I am once more struck by the familiarity of the aesthetic of the film. When she is skipping stones on the river, vibrant red dress surrounded by verdant green I want to be there. How I ache for colour.

(Narrator: Elle cultive un goût particulier pour les petits plaisirs. Plonger la main au plus profonde dans un sac de grains, briser la croûte des crême brulées avec la pointe de la petite cuillere.

Narrator: She cultivates a particular taste for the small pleasures. Immerse hand deeper into a bag of grain, break the crust of burnt cream with the tip of the teaspoon.)

I watched Frida. The colour, the vibrancy the power and the visceral reaction to her work and her strength. Her work is unapologetic. She is unapologetic. Her internal dialogue is shared on canvas or the plaster cast on her torso and is lived. She embraced her weird rather than hide or run. 

Frida Kahlo: You've lost weight.

Diego Rivera: And you've lost your toes.

Frida Kahlo: Is that why you're here? To offer your condolences?

Diego Rivera: I'm here to see how you are. How are you?

Frida Kahlo: Tired of answering that question. Otherwise, like shit.

That last line cracks me up every time.

I watched Midnight in Paris. The colour, the vibrancy, the sense of place and being lost in a world of imagination, possibility and renewal. Discovering your place. And the costumes. Oh the costumes. 

Gertrude Stein (Kathy Bates): The artist's job is not to succumb to despair 

but to find an antidote for the emptiness of existence.

I watched The Diving Bell and the Butterfly. The story of French Elle editor Jean-Dominique Bauby, who lived with Locked-in Syndrome, following a massive brain stem stroke. His only mode of communication an eye blink. He dictated his book, Le Schephandre et le Papillon, upon which the movie is based, dying 10 days after its publication. It is beautifully shot and his words lyrical. As a patient and someone who worked in neuro rehab I wish it were compulsory viewing for all medical staff. A reminder that inside the broken body, a person still resides. A person deserving of compassion and respect.

Jean-Dominique Bauby: My diving bell becomes less oppressive, 

and my mind takes flight like a butterfly.

On a side note, I wish our Australian hospitals took a page out of the French rehabilitation hospital. Green walls, red velvet curtains, open windows, paintings and pictures pasted everywhere something so taboo here. And set beautifully by the sea. I did a placement at a rehab hospital on the beach here in Melbourne. The environment alone was healing. But the land was a monetary boon and it was sold off and the rehab unit incorporated in another hospital set on a windy field on the edge on an industrial area. 

I have spent my time searching through art websites. I found the name of this vibrant print I was given for my 40th. It has escaped me for so long despite knowing it initially. A print I love by an artist I love. Name and print combined. History and story remembered. 

(Rose Seidler's House, Shag, 2006)

I found a print by the same artist that I'd love to have one day. I spent hours browsing his catalogue. More stories, more elements I never knew. Losing myself for a while. 

(The Lost Book, Shag. Outre Gallery)

I stepped outside and pulled a spent bloom from my cyclamen, Audrey II. The colour, the vibrancy, a reminder of those who care and support. Cyclamens and I have a rough history. I love them but they seem to see me and instantly keel over. But not this one. It thrives on my neglect. Maybe that's the lesson. 

I lost myself in the words of Neil Finn. I let the words enter and break down my resistance. I let myself feel and I let myself react. We claim his as Australian, though he is from our sister country New Zealand. But he is part and parcel of my Australian history. From Split Enz to Crowded House to his solo work. I have grown up with his work. A master story teller. A master songwriter. A true artist in a time of pretenders.

Hey, whenever I fall at your feet

Won't you let your tears rain down on me?

whenever I touch your slow turning pain.

The finger of blame has turned upon itself

And I'm more than willing to offer myself.

Do you want my presence or need my help?

Who knows where that might lead

I fall.

(Fall at your feet, Crowded House, 1991)

I ate up stories, real stories of real lives. Writers? Bloggers? That distinction is laughable for many. Voices owned and the passion of that ownership conveyed on the page. The messy, painful, raw and beautiful lives of others. Because there is beauty in pain. Beauty in the sharing. A gift in the access. And catharsis in release and discovery of a kindred spirit.

I read The Sound of a Wild Snail Eating in a single day. I read and I absorbed and I was transfixed by shared experience and essence. Vibrancy and life seen in the midst of a difficulty I understand only too well. I was reminded by a friend about the book. Someone whose heart shows in everything they do. I wrote the author on a whim. On a need to share how her book found it's way to me via a friend on a day where I needed it most. How moments collide just when you are feeling adrift. To my surprise and delight she took the time to write back. A gesture that reminds that people care. Even strangers on the other side of the world.

And healing can resume, begin, and continue.

That relentless and overwhelming exhaustion that perfuses my being is slowly abating. My body is still stagnating in continual dysfunction marked by pain and weakness. But I am healing me through self care and the care of others.

Family is not born of blood. It is not born of genes or parentage. It is not born of geography and proximity. It is born of action. It is born of time given. It is born of support written. It is born of a phone call. Of caring given without expectation.

It is born by those who remind you that you matter when you are having difficulty in remembering it yourself.

I am grateful for the family that surrounds me, in person and in the ether. I am grateful for the connections that exist. Some fleeting and some enduring. But each providing another thread to sew me back together.

I am grateful for that little feeling deep down inside. That tiny ember that is fanned back into life with every little kindness

I am grateful and I am healing.

Slowly. At a snails pace.

And I am living in colour.

Michelle

This may be my favourite Neil Finn/Crowded House song, although as I write that I can think of another dozen I would call favourites. I think it's the truth and genuine feeling that inhabit his words that have always drawn me to his work. Crowded House's first self-titled album was the first cassette I ever purchased with my own money. I still have it. 



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 $2,000, keep donating and hopefully we can reach $10,000.

Collect your scars and wear them well.

We are all a product of our past. The things that happen to us.
The things we do. The way we interpret them.
The power we continue to give.
We are a product of wounds and scars held together by good times, many or few.

I've been thinking a lot about the past. Being stuck in bed will do that to you. Nothing but my thoughts are active. My limbs too weak to tap away on the phone or keyboard leave me to ruminate.
To pull apart and review with fresh eyes. A past of decades, years and months.

The past is continuous and fluid. Each second experienced becomes past in a heart beat. No neat lineal path. But a collection of events, some leapfrogging others to link then to now. Peeled away and re-stitched to other events in varying orders as more is understood. As we better understand others.
As we better understand ourselves.

My idea of good and bad unique to me. A matter of perspective.

A matter of choice and chances, made by myself and others.

Looking back I wish others had behaved better. Looking back I wish I'd behaved better.
It goes both ways if you're honest.

Wounds happen. Scars cover them. Some scars are better that others. Some never fully heal and others become part of the landscape.

Don't talk about it. It being, anything.
You don't talk about that. Don't share. Don't speak up. Be quiet.
That's embarrassing. No one wants to hear about that. 

The 1980s were a different land. You didn't talk about illness. You didn't talk about family. You didn't talk about things that happened to you or your friends. Secrets whispered in the dark to girlfriends, or more often hidden from those who unbeknownst to you lived the same life and had the same problems. Wounds were gathered with alarming regularity and varying severity, but always hidden from public view.

You didn't talk about anything that mattered, that shaped, that broke, or mended. You hid it all and stuffed it down. And the universe laughed at your efforts. And the more you stuffed that down the stronger it became. Shaping you in ways you were unaware, or at least you stuffed down any semblance of awareness that dared to try and break through. The way you thought about them was warped by the times. Warped by lessons internalised since the earliest days of memory.

And if you did think about it. If you did feel. You told yourself it was wrong. That no one else thought like you. That you were weak. That there was something wrong with you. Shame born of silence.
A burden born by all yet experienced alone.

Breaking through that has been a hard road. I would start to speak and then withdraw even further. I would sit back whilst others spoke and say nothing of my own experience. Fear of judgement still shaping my interactions. Even now there are things never discussed. Some forgotten until something in the day-to-day clicks and it comes into awareness. Some that just sit there waiting to be shared but being pushed back down. Not yet. Not the time. One experience at a time, thanks.

The scars of life.

They shape you.

They shape how you think about yourself.

They shape how you think about others.

Shame and weakness. Never being good enough. Never trusting others.
They are the burdens I carry. They are the burdens that many carry.

I'm not sure when that began to change. I'm not sure why. I do know that it's an ongoing process.
An emotional cha cha cha. 

But instead of letting that past define me. Instead of letting all the bad shape me. I chose to see it as a blueprint for what I don't want. I want to remember the past. I need to remember the past. Not to dwell on the times I felt less, or the times I felt scared, or sad, or lonely. I want to remember the past to shine a light on the now.

I can't change the past. I can't change the hurts. But I can begin to heal them. I can chose how I respond. I can choose to see them as part of my story but not all of it. Plot points in the overall theme. I will acknowledge them not hide from them. And I will try to check myself and the power I give them.

For every failure there is a little thread of healing. Because every time I let it out, it is a victory. A triumph not seen before. Some scars take more time than others.
Their eventual healing all the more meaningful for the struggles faced.

I am my past. A past I am slowly learning to own. Forgiven not forgotten.
A marker by which to fully see my achievements.

I am still here and I am still kicking. I made it through. I made it. And I continue to make me.

I will speak my mind and my heart.
Sometimes with fear, but always with conviction.
I will speak to share, to heal others as much as myself.

I will collect my scars and wear them well.

Michelle