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.