Wednesday, 20 May 2015

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.


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.)

Wednesday, 13 May 2015

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.


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.


Monday, 11 May 2015

42: "It's here" (Must be said in the voice of the creepy little girl from Poltergeist.)

So 42 is here and I am none the wiser. I would even venture to say I am even less the wiser. Which isn't all that surprising. Damn you Douglas Adams, you lied. I slouch here in bed, 42, and still no clue about life, the universe and everything. Admittedly, I should have known. 42 was also Mulder's apartment number and while he was convinced that The Truth is Out There, he really never found a satisfactory answer. And if Mulder can go through 9 seasons and a couple of movies with Scully, and still be in the dark, what hope does a middle-aged woman with purple hair and coffee-stained pjs (it's been one of those mornings) have? And while we're at it, and I was procrastinating before writing by looking up pictures of Mulder, I came across this picture and realised that Tony Abbott has ruined the red speedo forever. I couldn't even look without a little bit of sick rising up to the back of my throat. Worst birthday moment EVER. And now you can't unsee that either. You're welcome. 

Answers to questions I didn't even know I was asking that became clear today:

  • Nasonex squirted under your armpits rather than in your nostril does little for your allergies. Although I'm pretty sure my armpits will be able to tackle rogue dust mites in a single bound while my nostrils continue to weep and offer up their lunch money.
  • A casually hung hand towel is not a substitute for a sturdily attached handrail when you are flailing about as you head downward. Terry toweling works well to cover your face and dab the drool from your lax mouth. Pro tip: check for errant hairs (yours, your husband's, or the dog's) and the location of that one miscellaneous slightly damp spot, before use.
  • When you are walking to the bathroom with an empty glass in one hand and your Florinef in the other don't put the pills in your mouth and stand baffled as they stick to your tongue rather than going down. Don't then try to drink from the empty glass, or fill and rinse the glass while you are gagging on the pills, still surprised that they are not going down and you still have an empty glass.
  • When apologising for slurred speech whilst on the phone to a local medical centre, the slurring does not suddenly evaporate. It is all just a continuation of slurring. Slurring overly articulated words, is still slurring. Though I have a feeling a frustrated half-whispered F bomb may be the only word that becomes crystal clear. Even should the phone be held away from the mouth.

I'm pretty sure that those are the bargain bin versions of answers to life, the universe, and everything. You'd find them tucked down at the bottom of the bin next to a Kenny G cassette, a battered Troll Doll and a dog-eared copy of The Secret. But hey, that's the kind birthday it is. I still feel like crap but still not sure that I feel 42.

So while I lay here and contemplate my navel and my past 42 years I'll repeat my birthday wishes from my Almost 42 post.

I have two birthday wishes. 

1) If you know someone living with chronic illness give them a hug and let them know you care. Because this shit is hard.

2) If you are living with chronic illness, know you are a superhero. Because this shit is hard.

Bring on the birthday cake. 


A funky birthday tune.

Wednesday, 6 May 2015

Maybe someday this pain will be useful.

A photo posted by Michelle Roger (@michelle_roger) on

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.


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
Posted by Jennifer Pastiloff on Friday, 17 April 2015

Monday, 4 May 2015

Not quite 42 things I've learned over the last not quite 42 years.

One week from today I turn 42. I am hoping that I'll find the answer to life the universe and everything. If not, well I'm not sure what I'll do. Probably sit apathetically on my couch and pluck salty chip crumbs off my dressing gown like most other days.

42 seemed so old to my child's mind as I sat watching episodes of Hitch Hikers Guide to the Galaxy on Mum's tiny portable black and white. I would plonk myself on the end of her lace covered bed and sit, glued to the TV, chomping on my plate of dry Weet-bix, topped with a thick layer of margarine and huge globs of glistening strawberry jam, taking in lessons about the importance of always having a towel. 42 seemed the fare of science fiction, not something I would ever apply to myself.

I don't feel 42, or almost 42, whatever 42 feels like. My body feels what I imagine 80 feels like (until I see a shot from the Masters Games and realise that I wish I was 80.) In my head I am still stuck in my late teens and early 20's. I still believe (You Gotta) Fight For Your Right (To Party!) and think The Only Way is Up. And that there is nothing wrong with being Too Funky. I still want to party like it's 1999 and I can't even think of 42 things I've learnt since I sat in Mum's bedroom in our old farmhouse all those years ago. I can't be bothered with lists but feel I should probably make the effort to impart some of my 42 years of knowledge. So here goes.

  • No one knows what they are doing. Some are good at hiding that fact, but most of us are just winging it.
  • If you want to dye your hair blue, do it. Don't wait. Don't worry what anyone else thinks. 
  • There will always be someone telling you what you are doing, like, or think, is wrong. For the most part those people are twats and don't deserve your time. There are a couple in amongst the yammering crowd who do deserve your time. Spotting those people is the big challenge. Because if it's you acting like a twat, you want someone to set you straight.
  • You will have doubts. Big buckets of doubts. Recognise them. Accept them. Challenge them. Like most people telling you that you are doing life wrong, those doubts you are carrying around are arseholes. Don't let arseholes run your life.
  • Don't be a dick. If you are a dick, apologise. 
  • Screw trends. Wear what you want. If it makes you happy wear it. Confidence shines far more than squishing into the latest trend in jeans. 
  • If you believe in something don't be afraid to have a say. Fight for the good. Shout it from the roof tops. People will shout back, but if you believe passionately it's worth the effort.
  • If an opportunity comes your way take it. You can lie awake at night worrying about it afterwards, or worry about peeing in your pants as you roll up to the stage, but odds are you can do it. Or stress will wipe the memory from your mind so it is all a blur and you'll agree to the next opportunity to speak in public. 
  • Breathe.
  • Give yourself the compassion you 'd give others.
  • Eat the chocolate. 
  • Life sucks at times and it's okay to say so.
  • Life is amazing and beautiful at times and it's okay to enjoy it.
  • Dig your toes in the earth. Or the sand, or the water. 
  • Always challenge your beliefs. If they are worthy they'll stand the test. If not, you have new knowledge. 
  • Change is good. Same old same old leads to stagnation.
  • Different isn't a bad word. Embrace the infinite variety of life. You don't have to want to live your life the same way as someone else, to respect and accept their choices. The world opens up into a beautiful place when you yourself are open.
  • The world will not end because you don't eat the kale and think green smoothies look like the Slime in a Can, you used to get in your showbags when you were a kid. It is okay to say you would rather eat the slime, or a Tim Tam, instead. 
  • You have more to offer the world than beauty. Beauty is a construct. An ever changing and ever limiting construct. You can be intelligent, strong, kind, brave, or all kinds of things other than beautiful. Open up a dictionary and find ALL your words. 
  • Similarly, happy. We have a happiness industry these days and yet happiness seems more elusive than ever for many. Happy is a basic word to explain a complicated concept. My happy isn't your happy. And that's okay. It's also okay to NOT be happy sometimes. We have a variety of emotions, use them. 
  • Laugh. 
  • Fart jokes are always funny.
  • Read. Read a lot. Read crap as well as the classics. Just read. 
  • Watch bad TV. If Judge Judy floats you boat, watch. If you like your Housewives, watch them. I would never have learnt about the Smize, if not for watching America's Next Top Model. 
  • Hate is a blight on the world. We are so busy hating others we cannot see our own flaws. When we hate, we dehumanise. And when we dehumanise it makes us capable of acts and thoughts we would never normally entertain. Hate serves no one and minimizes us all.
  • You will make mistakes. Lots of mistakes.  
  • You will have the opportunity to do good. Big and small good. Take those opportunities. Not for any personal reward. Just because it adds to the communal ether.
  • Religious or political affiliations do not make you a good person. Actions are what matter. Especially how you act towards those who are vulnerable, different, or can do nothing for you in return.
  • Wear make up or don't wear make up. Neither decision makes you a better or worse person. Same with tattoos and hairstyles and peircings and.....
  • You are not your past. 
  • Someone who holds your hand as you sleep, is worth their weight in gold. 
  • Sometimes you just need to do something forbidden even if you pay for it later. I'm talking a forbidden glass of wine, not bank robbery. Rebellion, even small rebellion, is good for the soul. 
  • Politicians suck.
  • Media reporting sucks.
  • Media reporting of politics sucks.
  • Don't believe everything you see on TV or read on the internet. Be skeptical. 
  • There are far to many hate and fear mongers in the world. Be a do gooder. I'm not sure when doing good became a bad thing, but screw that. Wear that do gooder label with pride.
  • Love, Kindness and Hope should be sprinkled liberally. 
  • When shit happens you'll think you wont make it through. You will. It just doesn't feel like it at the time. But you will.
  • You are worth it. 
  • It's okay to change your mind. When you learn better, do better. 
  • Life is full of possibility.
  • Dog cuddles are smelly and wonderful. 
  • Sing badly and sing often.
  • Singing along to Vogue and doing all the moves, is a great panacea on the bad days.
  • I still have no clue what I'm doing.

Okay so that was longer than I expected. There's probably more. Maybe even 42. But I need to pee and there are also the meds I just realised I forgot to take. 

No doubt after next Monday I'll still have no clue about life, the universe or everything. I'll still be muddling through. And that's okay. Muddling has gotten me this far. It'll do for a while yet.

I have two birthday wishes.

1) If you know someone living with chronic illness give them a hug and let them know you care. Because this shit is hard.

2) If you are living with chronic illness, know you are a superhero. Because this shit is hard.


And because in my head I'll always be that teenager singing into her hairbrush in front of her cassette recorder, I give you one of my all time favourite 80's songs, Don't Leave Me This Way by The Communards (1986) with the amazing vocals of Jimmy Somerville (of Bronski Beat fame.) 

Tuesday, 14 April 2015

No News Week: The Womankind Challenge

Back in February Womankind magazine put out a challenge. Have a week with no news. Write about it and send it in for a chance to have your story published. I had the week without news. I even wrote about it. Before promptly forgetting to send it into the magazine. In the process of cleaning up my cluttered desk top I found it again, two months late. So here it is my experience of a week with no news. 

I wake each day as our neighbour's growling four-wheel drive reverses past our headboard and out into the street. Thin walls and a driveway less than a metre from our bedroom negating any need for an alarm clock. I turn my head and reach for my phone. The routine ingrained. But not today. Today I pause. No news. The parameters are clear. The challenge accepted. And already I am chaffing at the bit. My fingers hover over my phone aching. But one click and there it'll be. The weather forecast on the screen. The light flashing to let me know of messages and alerts from Twitter, Instagram or Facebook. Social media my all to willing dealer feeding my news addiction. Politics, asylum seekers, disability advocacy and health reform, women’s issues, I follow it all and I follow it ravenously. Cold turkey is not an appetising option. But how to avoid news not just for the day but the week?

News filters into every aspect of life. The Borg were right, resistance is futile, at least if you interact with the world. I can refuse to click on my phone or open my laptop. I can turn off the television, and car radio. But head to a public space and all bets are off. Radios play in the shops and boards sit out front of the local news agency holding headlines from the major news outlets. Glossy magazines glare at me at the checkout and flat screens play overhead. Even in coffee shops wisps of news flow from conversations at surrounding tables. Short of becoming a hermit it is near impossible to avoid.

I recall as a child the hourly news on the radio, the daily newspaper and the nightly news. Now a 24 hour news cycle and rabid adoption of devices and a need to know, make the news part and parcel of life. A constant whir in the background even when you're not consciously attending.

There's a pressing feeling of being out of touch. Of missing out. I pride myself on being up to date on major issues both here and abroad. I discuss international politics with my children and watch news documentaries as a family. To not have that link. To feel out of place. Out of line with the rest of the world. Of time moving on and falling behind. Twitching fingers and twitching mind. Used to being fed continuously. Instant gratification available at the tap of my thumb.

Silence. A week on, no news means silence. But the silence is not without noise. Instead of the noise of multiple lines of information, it is the noise of the bird song and breeze. The turn of a page as it scrapes against my jeans. The soft snuffle of my dog tangled around my feet. St Louis Blues coming from the lounge and the tap of the keyboard as I write without interruption.

Clarity with the silence. A rejection of news and technology for a less cluttered mind. A welcomed tradeoff that I had underestimated. Half-way through I realised I wasn't missing the news. I wasn't missing the noise. Once the restless agitation of cold turkey had passed I felt the calm. News is so much bad. Pain and horror. Disappointment at the political discourse and a sense of hopelessness at the tone of the world at large. The meaninglessness of celebrity, dross that fills the airwaves. The good works and silent struggles forgotten in favour of the sensationalism and repetition. Not putting my feet in that foetid pool is quite good for the soul. My family interrupted my embargo to tell me of the passing of Leonard Nemoy. Spock no more. But it was the only news I consumed in the seven days.

The world meanders on changing little over the week. When the screens are lifted and I emerge once more into the world of news the same conversations continue. The rhetoric of the politicians the same. The evening news follows the same patterns. The stream of Twitter continues as outrage mixed with unoriginal memes. The lives of friends mattered but the news as it is presented online and in print are seen with a level of clarity. Step back. Be more discerning. Turn it off and listen to the bird song more.


Monday, 13 April 2015

How the other half live.

Lying on my side I could feel the hard tiles under my shoulder and hip. Poor absorption of food for years on end has left me with little padding on the tender bones that poke out. I could take out an eye with the knob of bone sticking sharply from my elbow or the pointy bit of sternum that sticks out just above the ever present pulse that spasms and bounces. And here I was again, communing with the short and curlies, dust, and ever present Freyja hair on my grey terry toweling bath mat. At least this time it wasn't through collapsing limbs or plummeting blood pressure. Though when I say "At least" what I really mean is a long line of expletives stretching off into the distance, far beyond the dusty underside of my bed, that I can see through the doorway of the ensuite.

I try to find a more comfortable position but no matter how I brace my body it all hurts. The green and white box in front of me has two delightfully demented yoga positions to choose from. Bum up or on my side. Put one leg here, another over there. Bend this bit and that. I wonder if I simply adopt Child's pose, can I cry "Mummy!" Physical comfort is further pushed down as I contemplate the process ahead. If I had any muscle strength left my nether regions would be bracing right about now.

Delay. Delay. Double check the box. Close my eyes and think happy thoughts. But no amount of puppies and kittens is going to help. No happy place is to be found. But the pain in my abdomen begs "Do it. Please just do it." A desperate rock hard abdomen is hard to argue with. So I don the gloves, lube up the applicator and resign myself to the inevitable.

I lie on the tiles as I wait for the contents of the bottle to work. It's been over a week since I last went. I have taken a laundry list of medications to get things moving. I employed all the maneuvers given by the local continence nurses. I watched the videos and studied the leaflets. I "moo" like a cow while bent in two, feet up on an overturned basket. And still nothing. Things go in but they never come out. My gut the Bermuda Triangle. And so I had to cry uncle and go from softeners and suppositories to the big guns, the enema. Stories of people so impacted they vomit up poo a good incentive to forego any last remnants of dignity.

1 in 2 people live with chronic illness. In disorders like Dysautonomia continence is a hidden issue. An unpalatable issue, but a common one all the same. When I hear people say all I  need is a positive attitude I wonder if they could be all Pollyanna as they stick a tube up their bum and squeeze fluid up into the dark recesses of their body. Or when they have to explain the intimate details of their bowel and bladder habits to strangers. Or when they have to see a physiotherapist to learn how to poo again. Or when they have to consider more medications and stimulators and flushing and......all so they can do the most basic of bodily functions.

The nausea, the pain, the worries about malnutrition. They are part of life now. But it is hidden from sight. I went for bloods and the nurse said I looked great. Then she looked at my sour face and mumbled that she guessed I didn't come in when I was really unwell. And that's the problem. So much is hidden from public view. And so many don't want to know.

You see chronic illness isn't something you simply positive your way out of. It's not a question of attitude. It is learning to manage sometimes incredibly confronting and unpalatable symptoms and their equally confronting and unpalatable solutions, or partial solutions as the case may be. If reading this makes you feel uncomfortable, imagine what it is like to live with it every day. To have use suppositories and enemas because there is no alternative. A reader can stop reading. They can turn away and forget. For those of us living with chronic illness there is no choice. We must live with the unpalatable. We don't have the luxury to turn away and pretend it's not happening.

"I could never do that!"

Actually you can. You do what you have to do. You do things you never thought you could. Because there is no choice. It is simply life.

Those of us that live with complex chronic illness and disability are well aware of just what we have to do. What we can do. We do it and we get on with life.

And today I up my dose as it all starts to slow once more. And I talk to my nurse and I break out the gloves. And contemplate another day spent lying on the tiles.


If you have problems with continence there are people who can help. Contact the Continence Foundation of Australia for more information on how to locate a clinic or practitioner. There are also links to videos for pelvic floor exercises and helpful tips. There is even a toilet map app which I reviewed here. Continence issues can affect anyone at any age. Don't suffer in silence, seek help and guidance. You are not alone and you don't have to be embarrassed. There are similar organisations in most Western countries.

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.