Thursday, 12 March 2015

One ticket, please.

(Why yes, I have done that on more than one occasion, source)

Once upon a time I stood in an auditorium and helped to present a new protocol for my hospital network. I fielded questions in the room and later outside in the foyer over bad hospital coffee and dry biscuits. Questions relating to the implementation process were interspersed seamlessly with meaningless small talk. In the months prior, I had sat in a room full of senior staff and held my own. Always saying my piece without fear. Well, until after. In the moment I was good. A switch would go off in my brain and I would be in full work mode. Afterwards I'd beat myself up  for stupid remarks and things I should have said. But somehow in that moment I had the gift. What my father would call, an ability to "baffle them with bullshit," though in truth some of my bullshit also had substance. Prior there was stress too. Panic that what I was doing wasn't good enough. What was I doing? I wasn't senior enough to be doing this. Imposter Syndrome is the term bandied around now and I had it in spades. In reality I knew my stuff. But that little voice in my head was a total Mean Girl. Work mode vs personal mode, night and day.

That anxiety and lack of confidence continues to plague me. Though those old instances were like a half-arsed trial run. Someone playing at anxiety. Or maybe I was trotting the boards playing at confidence. (I now have "Act, Gary. Act." stuck in my head.) Either way since becoming ill my anxiety has hit some quite spectacular levels. Losing the limited confidence and skills that I once had has been hard. I hate social situations. I hate interacting with people. More than hate, it scares me sick.

Last year I made a decision to put myself out there and both seek out and take any opportunities offered. Having said that, the Mean Girl has never let up. Telling me I had no chance. No one would want me. I was a complete idiot to even think I could. And my hair looked stupid. As exciting as a yes email was, it was also a shock, followed by pee my pants fear. My long suffering family can give you many tales of me prostrate on the ground fighting off rising panic as certain events came closer. I'd wind myself up with anxiety. I say "I'd" as if it was a past issue. But it's not. Not even close.

I'd rather dig my eyes out with a rusty spoon than make small talk with people. I call my family members "buffers." They are my safety zone in a social situation and without them I can feel the panic rise. It seems ridiculous writing it out. I'm a 41 year old woman who'd rather spend the rest of her life in a cave than have to speak to people, or worse yet, meet new people. Swim with sharks? Sure, why not. A dinner with others? Watch me flee as fast as my stumbling lurching legs can take me.

I run through all the stupid things I'll say or do, long before I get somewhere. And in the moment, the panic that suffuses my body means that the words that come out are often harried and odd. Add in that I often have trouble speaking at the best of times, between the dysnomia and dyspraxia I am very self conscious when I'm out and about. I'd rather sit quietly in a corner pretending to sip a drink than interact. Thank goodness for a temperamental body that means I am often physically unable to go places. Go, Dysautonomia Go.

Being ill I have also lost the social currency that is a job. What's the first question you get asked when you meet people? "What do you do?" Ugh. Already I am screwed. I tried to say I write the other day and my lack of confidence just made me look like a fool. And "I'm home thanks to illness," doesn't have quite the same ring to it. Writing from the safety from my bedroom in my pjs I can be confidence central. Out in the real world I melt like ice cream on a Summer footpath. A very panicky and insecure ice cream.

And yet a part of me keeps fighting.

Yesterday I took the plunge and bought the second last ticket for a local International Women's Day event. A. SINGLE. TICKET. I'll pause to let that sink in. Excuse me while I hyperventilate for a bit.
That's right. I completely lost my mind and booked the ticket before I could think. I blame the pain meds I took for the knives slicing into my abdomen. There's an anti-drug message for you.  Now it is dawning on me that tonight I will be alone.

In the next town.

At night.

In a room full of strangers.

In my chair.


I can already feel the bile rising in the back of my throat as the enormity of what I have done becomes clear.

So tonight I'll be watching a film about yodelling lesbian twins from New Zealand, and listening to Clementine Ford speak. All while swallowing down fear vomit and clenching my cheeks to stop anxiety bowels from making a break for it.

Wish me luck.

Next week I am going to a blogging event that requires networking. OMFG. NETWORKING. If you're in Melbourne for that, I'll be the woman in the wheelchair hyperventilating or feigning death in the corner.

Tell me. Have you taken any leaps into gaping maws of death of late?


As I descend into a spiral of panic as tonight draws closer, I am turning to Madonna.

You're a superstar, yes, that's what you are, you know it.

Repeat ad infinitum

Here's hoping I don't unconsciously start doing the hand movements as I mumble this mantra tonight.

Friday, 6 March 2015

When is an accessible park not an accessible park? Gippsland South by-election early voting.

Accessibility is an ongoing issue in Australia. It makes life difficult. I hate having to call ahead or double think where I can go, but at present it is a fact of life you have to deal with if you're in a chair or your mobility is compromised in some manner. I resign myself to not being able to shop in many stores or go to certain restaurants and bars as the venue is simply inaccessible. Or often even if there is a ramp there may not be an accessible loo once you get inside. I am lucky that some days I am more mobile and can use my cane with aid, but many are the days now where a chair is my only option. On those days my options to shop or participate in the community are even further restricted.

When I see a blue accessible parking sign, even a temporary one, I assume that it will be an accessible park. Especially when it has been put up by the Victorian Electoral Commission. But no, not even that can be relied on. You can pull into a park set aside as the accessible park, by a government body and find that it is just a regular park and the bollard meaningless.

I went to put in an early vote today. There was a removable bollard indicating an accessible parking spot. So we pulled in. Only problem was that it wasn't in any way accessible despite being close to the store converted for early voting. Once out of the car I either had to negotiate up over the gutter or go out into the street and negotiate the traffic to find a portion of the street that had an accessible ramp to get up onto the foot path.

I did not fancy having to go out into busy traffic to roll along either, to the right) in between parked cars and moving traffic, or to the left) onto the road and into oncoming traffic and a busy roundabout to make my way to a ramp. So I left my chair in the car and used my cane with the support of Mr Grumpy. I managed to stumble, unsteadily up over the gutter and make my way slowly to the converted shop. Given how unsteady I was my risk for a fall was high.

The gutter I had to negotiate.

On top of that there was a step into the store where early voting could take place which would have created even more difficulty should I have been in my chair. Alone in my chair I would not be able to enter the shop.

Step into the front of the store to vote.

Disappointingly when Mr Grumpy spoke to the representatives of the various candidates out front about the poor accessibility of the site, their response was a typical 'not our problem we didn't pick it.' Not even a 'Gee, yeah you're right. We should do something about that.'

Not like we disabled folk vote. Oh that's right we do, but not for the candidates whose representatives fob them off.

What I hate more than a completely inaccessible building is when people make a pretense of thinking about accessibility. As if by putting up the bollard they'd ticked all the boxes. (Admittedly we didn't mention it to election staff inside as frankly I was just over it. If I had my time again I would, but it gets exhausting always having to point this stuff out.)

Accessibility is not a sign.

But if there is one I should be able to rely on its presence not only to park, but be able to access the building to vote.

Even should the parking spot have been valid, what is the point if the shop where the actual voting takes place, isn't accessible?

I'm not sure how this is so hard. But I do know it is exhausting always having to second guess and educate.


Tuesday, 3 March 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.



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.

Friday, 20 February 2015

Compassion starts with the self. #1000Speak

This post is part of the #1000Speak. 1000 voices from around the world speaking up for compassion, 2oth February 2015. The world most definitely needs more compassion at the moment.
You can find all the posts here.

Self-compassion isn't an indulgence. It is a necessary part of life and without it we can't truly engage with the wider word in a compassionate manner. It's been a hard lesson to wrap my mind around and I am still working on it, but I'm getting there little by little each day. 

I am always amazed by is how a single negative comment can outweigh a dozen positive. Doesn't matter if it's about me personally, the blog, my shoes, how I do my hair, cook a a meal or even my taste in TV shows. If I'm not careful, every single good comment can be swept away with one little ,"you suck". Doesn't even matter who it comes from. Stranger, friend, family, that negative is like a tsunami sweeping away all before it. For some inexplicable reason many of us tend to hold onto those negatives. We imbue them with a power that is hard to dislodge. And ruminate upon them until we adopt them as our own. Self-flagellation at it's finest. All because that one comment tapped into an emotional raw spot in our psyche. 

I still recall every nasty nickname or put down, from primary and high school. I remember every time I was told I was not good enough. Not pretty enough. Not smart enough. Not something enough. Most of the time I can put it in it's place, but every now and then a crack opens up in my defences and someone will make a comment and all those old feelings will flare up as raw as they were back the day when they were first laid into my being. 

Being chronically ill my emotional resources are often stretched and on the days when I am really tired and really unwell those negative comments can end up gaining an importance they simply don't deserve. And being chronically ill you will be told all the ways you are doing it wrong, or how your response, or even you, are essentially a failure.

It's bad enough at a personal level, but for me one of the most heartbreaking aspects of living with a chronic illness is hearing how poorly others in the same position, are treated by those in their life. It's one of those times where I wish others didn't "get it". Where you would expect compassion there is, for many, naught but derision and criticism. Somehow our society has moved to a place where people are blamed for illness. Not just strangers, but family members and so-called friends. All competing to tell us how we are doing things wrong. As if illness, or an inability to recover, is somehow a personal failing.

So often I hear tales from fellow patients where they are told that the way they live their lives, deal with their illness, generally choose to live, are wrong. 

They are too engrossed in their illness. 

They are not trying hard enough. 

They want to be ill. 

Or the old chestnut, "it's all in your head".  

Despite logically knowing that we are doing our best under extremely challenging and often painful circumstances, we are often left feeling guilty or bereft because that little voice in the back of our minds, whispers "maybe they are right?" Somehow we give a monumental amount of importance to the perceptions of others. Others who are not living our lives and have only the briefest and most superficial glimpse of our day-to-day existence. We imbue others with an expert status on a topic they really know nothing about.

A long time ago, I realised that the question I needed to ask myself is, "how do the perceptions of others add to my life?" Do they bring positivity and joy, or do they make me feel worse? And if their ledger came up in the negative I put up boundaries or in some cases, cut people out of my life altogether. 

I cannot prevent others from being critical and negative about me and the way I choose to live my life or deal with my illness. But I can choose the importance I place upon their opinions. 

I can choose me. 

And I am worth it.

I choose to surround myself with those who bring me happiness and joy and who help me see that it's okay to simply be me, warts and all. Those who add to my life, not crush it at every opportunity or when I am most vulnerable. There are some I can't avoid, but I now choose how much weight I give their opinions and put a soul-preserving distance between us. 

None of us can control the actions of others, but we can choose whether we allow them the honour of writing on the slates of our lives. And it is an honour. Our sense of self is precious. Too often we are taught to undervalue ourselves and our needs. We carve the negative in stone, and hold it near and dear. We cherish it and repeat it to ourselves until it is all we can see. And in the end no one is ever satisfied. Not those who criticise. And especially not ourselves. 

In life we have choices, and one is to decide who we allow to define who we are. Have those we allow to direct how we feel about ourselves, really earned that power? Do they add to our lives or do they subtract from that which defines our perceptions of self worth? It's a hard lesson and one that takes work. Sometimes criticism is constructive and sometimes it is not. But by learning to value those who add to our lives and equally put the negative in their place, it can make what is already a difficult time a little easier.

Becoming ill you undertake a crash course in sorting out the wheat from the chaff. You are forced to re-evaluate what helps and what doesn't. You are forced to re-evaluate how you see yourself and how you want to see yourself. There will always be someone who puts you down or tells you that you aren't enough, but those people don't deserve the honour of defining how you see yourself. 

It can be challenging and heartbreaking, but you are worth the effort. Never forget that. 

Michelle :) 

Thursday, 19 February 2015

Allegro, Microfibre 20-30mmHg Black Thigh High Compression Stocking Review

This photo is from last year when I originally started trialling the Allegro's for a review. After which I promptly forgot I was doing a review. A year later I recalled that I had a half-started review sitting in drafts. So 2nd times the charm and it may be time for some memory testing. 
Stockings: Allegro
Skirt: an op shop find a I shortened
Jumper: Jeanswest early 90's 
Slippers: Peter Alexander Dorothy series, gift
Dog: cheeky photoloving Great Dane, Freyja

I should add this is not a sponsored post (mind you I wouldn't knock one of those back. It would be nice to be able to pay for my own coffee just once). Nor is it an exhaustive list of brands and options. Instead, it is based on my personal experience, and for those considering compression stockings either for the first time, or those tired of the regular range of stockings and looking for a bit of spice in their compression wear. Your treating doctor should be able to advise you as to whether compression stockings may be helpful for the management of your form of Dysautonomia and the strength and type of stockings you may require.

Trying to find a good affordable pair of compression stockings can be difficult. I love my Juzo Softs but they are at the pricier end of the spectrum and I have a pang of guilt each time I order them. I have been experimented with a few brands over the years. Juzo, Jobst and Rejuvahealth which I reviewed here. But they are mid range to high cost options. On a whim and because there was a magical Sale sign next to the product as I was browsing, I purchased a pair of Allegro, Microfibre Black 20-30mmHg thigh highs to try out. On sale at just under $35 at the time, but they normally fall just under the $50 mark.

Like previous reviews I wore these for a full day doing my usual activities. Before purchasing I followed the manufacturer's instructions on sizing measuring three times to ensure correct fit.

Allegro, Microfibre, 20-30mmHg Black Thigh High.

The first thing I noticed upon opening the pack was that they feel very synthetic. They also carried a distinct plastic/chemical smell to them which may be problematic for those with sensitivities to various smells. This smell increased as they warmed up from wear. It did reduce somewhat after washing.

Unlike the description on the website and accompanying advertising they were not what I would call opaque. This was particularly evident above the knee where were quite sheer.

The reinforced toe of the stockings was very obvious and high. This impacts what shoes you can wear with them. I tried on numerous pairs of shoes and short of putting on my boots I could still see the thick black line of the toe guard.

Similarly there was a distinct line at the top of the stockings and the silicon band at the top of the stocking was heavy with a clear demarcation between stocking and band. This is unlike other brands I have tried which have a smoother transition from stocking to band.

With a pair of my Juzo Soft for comparison. Note you can actually flick up the hard band.
And I now realise I need to redo my chipped nail polish.

As I found with the Rejuvahealth stockings, they are not for those with longer legs. I am not overly tall at 5'7" but do have long legs for my height. Combined with a fondness for minis I found myself hiking them up all day and being very conscious of how I sat. They did slowly drop over the day but unlike the Rejuvahealth Opaque Diamond I reviewed last year they didn't fall down completely.

The main drawback was that they are particularly hot and for the first time in years of wearing compression stockings, they felt quite claustrophobic. I wore them on a 27C somewhat humid Summer day and felt really overwhelmed. The best thing I could compare it to, is when I had a mud wrap in Singapore many years ago and they wrapped me in plastic and hot towels to encourage the mud to do its magic. The only magic with these was that I managed to keep them on despite coming close to taking them off multiple times throughout the day.

After a full day of wear, sitting on grass, and wooden spools in the yard, falling onto my knees in the wood chips in the garden next to the wooden spool, being sat on by a great dane and doing some basic chores around the house there were no runs or pulls evident. 

This is what is known as the 'Trying to swallow down the vomit sitting in the back of your mouth because you were stupidly stubborn and took photos in the sun on a hot day' pose.
Stockings: Allegro
Dress: Asos, $20 in the sales last year
Shoes: Rubi $10
Dog: yet again a photo loving Great Dane, Freyja

They came up well after a cold hand wash and compression was unaffected.


You will know you are wearing compression stockings. 

Given that thermoregulation is a huge issue for those with Dysautonomia they may not be the best option given how hot they are. While all compression stockings are problematic in this aspect, and we do make a trade off between being able to be upright and overheating, these are by far the hottest pair I have tried.

They are a cheaper option and stood up to wear and tear in my day. 

However, I would be highly unlikely to wear these again.


And just because I love it, and it cost me a sum total of $2 many many years ago, a close up of the necklace I wore.


For more on compression wear you can check out

Compressions Stockings from Beige to Brilliant Guide.

Rejuvahealth Review.

LympheDiva Gauntlet Review.

Fashion blogging is not for the faint of heart

Because I did manage to make it through without a vomit and only one fall into the garden and one on the grass, a little celebration music from Sia.

Clap your hands, clap your hands

Turn the lights on my nights
This is life
And we only get one thing, oh

Wednesday, 18 February 2015

When suck it up, becomes the only pain treatment you are offered.

I sat on the floor of my kitchen yesterday while the coffee machine heated up. I played with the annoying patch of skin in my cheek that was shredded by a potato chip the day before. Fragile skin that tears when I so much as look at a piece of crusty toast. Just another small gift from the gift that keeps on giving, my body. It's my 'loose tooth', I can't stop poking it with my tongue, but it's also a bit of a tell.

I have been mulling over yet another disappointing medical appointment. You'd think the use of the words "glycerine suppositories, followed by the really unfunny dad joke, "But don't worry it's not nitroglycerine. You won't blow up!" would be the low light. But in truth that just made me think of the "Suppository of Wisdom," quote from our delightful PM and I had a momentary internal giggle. Instead, it was the moment that my continuing abdominal pain came up.

Once the joy of chronic constipation was out of the way I foolishly asked once again what could he suggest. And I was summarily told that it was not his problem, and that

Nobody is going to take ownership for that.

I just have to manage it with pain medication.

But not narcotics. Maybe I could up my pregabalin?

But other than that I have to live with it.

He'd wiped his hands of the whole issue.

So I sat on the somewhat sticky kitchen floor, stewing and further wrecking the skin inside of my mouth. A mix of anger, frustration and sadness flowing through while my tongue worked furiously at the shredded flesh in my cheek.

I still don't know where I'm at with this. The pain is constant. It is disabling and it is incredibly, mentally draining. There is something about pain that the medical field really doesn't seem to understand. It is stigmatised and wiped away like an after thought. I watched a timely Insight program about pain last night. The difference in the way patients and doctors discussed it was illuminating. Listening to professional athletes whose pain is managed and supported by the experts that surround them, equally illuminating.

Living with chronic pain and discussing it theoretically, are worlds apart. As one of the speakers said the conflict over the use of disease or condition is largely academic. Those who study and hold the power, fight over the wording, while those who live with it try to get by with therapies that partially work. Dealing with burning and stabbing and zapping and crushing and all the myriad ways it presents.

Out the front of my GP clinic is a large sign that says they will not prescribe drugs of dependence except for terminal patients. In the ED I feel an inherent sense of guilt when I need pain medications, although in their defence I have had little trouble in getting them prescribed when I am curled up in a ball of teary pain. Do I want to take pain medications? The simple answer is no. Just like I don't want to take any of the medications I am prescribed. But equally I know that those same drugs keep me functioning. That without them I would not be able to write this post, or stand, or walk the few steps to my toilet. Similarly, adequate pain control gives me the ability to drive 3 hours to the city for my medical appointments and to sit on the couch with my family without tears. But access is complex. And there is a pervasive idea of the drug-seeker, seen in every patient who has chronic pain. That those who simply don't get over pain and require ongoing pharmaceutical management are weak. Friends who have used pain clinics tell stories of dismissal and blame. That they are not trying hard enough when they don't recover, when I know the lengths they have gone to to try and alleviate their pain. And compassionate pain doctors who become the exception not the rule.

Is there a psychological component? Of course there is. The way we approach things affects how we perceive them. The Insight program demonstrated that. But it is not the only component. And whether it is a factor in maintenance or experience of the pain, or a consequence of the physical, emotional and psychological stress of living with never ending, poorly controlled pain, or a combination of all these factors is unclear. Even the neuroscientist on the program admitted it was extremely hard to treat and we don't yet understand all the various mechanisms involved. Sitting watching him demonstrate the peculiarities of our neural networks I am reminded that little has changed since I undertook my training. And that while interesting, it is how we transform those peculiarities from parlor trick into adequate treatment, that remains problematic.

Patients with chronic pain continue to be stigmatised and abandoned. We are put in the too hard basket or doctors throw up their hands and don't even bother with a referral to a pain specialist. Needing pain management is seen as weakness. And instead of using pain medications to manage pain we must negotiate a system and society that sees such a need as drug seeking and to be avoided. And so I get to cry myself to sleep from the pain on more nights than I want to admit. I manage as best I can with mindfulness meditation, heat packs, gentle yoga, pain meds when I can't take it any more, and spend a lot of time trying to simply suck it up.

Now I have to contemplate trying to find a pain specialist. I get to find one myself as apparently no one wants to take ownership of my pain. In truth I don't want anyone to take ownership. It is mine and I own my experience of it. But I do want someone who can guide me beyond "manage it with pain meds." I want to be able to function. And I don't think that's a lot to ask.


I've put this song up before as it always speaks to me about pain and I love the idea of being able to wash it all away in the river. If only.

Tuesday, 10 February 2015

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.


Thursday, 5 February 2015


"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.


Because the reasons don't matter.

And because I acted like a complete arse.

Side-effects of long term illness may include:


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. 


Tuesday, 3 February 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.



Saturday, 31 January 2015

What if today you chose kindness?

(Frida Kahlo, Self -Portrait with Thorn Necklace and Hummingbird, 1940)

What if you were kind to one person today?

What if that person was you?

What if you said 

I'm enough

What if you allowed yourself to believe 

That perfection is but a lie

And imperfection the masterpiece

That the things don't matter

That the what if's

And the if only's

Are the sleight of hand we use to hide the truth

Lies are told

By the empty sages who howl at the door

The musts

The shoulds

False prophets yell from street corners 

To tell you the wrongs

The failings

The disappointment

The bruises and the hurts

Delivered and delivering.

Empty words 

Bleat incessantly

Beat you down into submission

Ease in agreement

False beauty with talons

Acquiesce and be torn apart

Momentarily placated


The goal posts move


Conflicting commands

Come from new corners.

Close your ears to sirens

Bind them

And fill them with daisies

Hold the silence

Listen for the first whisper of truth

Let it grow

The rhythm of the heart writes on the stone

Slow and steady

While the world around ebbs and flows

While beasts scream and claw

And clamber to cover and obscure

It continues below. 

Waiting to be recognised

Waiting to be found


Vibration and resonance


That it belongs

The song plays

While the mosquitos buzz

Hear the breeze 

Gentle caresses on leaves above

Eucalyptus to cleanse

Hints of rosemary 

For remembrance and clarity

Scent and sound.

Wipe the oils on your brow

And wrap the leaves round your heart. 

Focus on the melody

Let the words rise





What if today you chose kindness?