Saturday 24 May 2014

These boots were made for walking, unless you have Dysautonomia and require a wheelchair, in which case these boots were made for rolling!

"You were't doing anything important were you? No. 
Okay I'll just sniff and try to lick your face then"

After the massive expenditure of spoons yesterday to simply get to the shoe store I thought it only fitting that I dedicate a post to the boots I purchased. I pulled myself together and put on some reasonable clothes, grabbed the boots, and convinced Mr Grumpy to take some photos. I may have forgotten until back inside that I had left my lipstick on the bathroom sink and not put any on my actual lips. And the earrings I was going to wear were next to the lipstick. But hey you get that. 

Trying to get photos was somewhat hampered by a photo bombing Great Dane by the name of Freyja. She has a sixth sense for the camera. Plus standing was out of the question today, so all shots were sitting. 

"Why don't I just lie my head on your legs."

"Oh you were taking photos. Let me sit in front."

I have been looking for a pair of green boots like these for ages. 
Pretty flat so I can walk a bit with my cane.
And they look quite groovy with my compression stockings.

And, after the effort of getting them on, really quite comfortable.

The change over was exhausting. 
Who's mad idea was it to get dressed and try on two pairs of boots? 
Who forgot they had weak hands with no fine motor skills? 
Why that'd be me. 
Half and hour later they were on.

"Don't mind me I'll just lie down in front" 

It's only in photos that I realise how big she is. 
When you live with a Great Dane every day they just look normal size. 

This pair have a wedge heel. I can walk slowly in them with assistance, 
but they are more for when I am in my chair so not walking.
I may also be starting to fad a little by now. 

Groovy stockings and cute grey ankle boots for the win!

I do like the pattern on the toe.

Oh and a cute necklace with robins. 
Remembered that, if not the earrings. 

Top: Lazybones. Can't recall price as a while ago.
Skirt: Rivers AU$10
Stockings: Juzo Soft tie-dye in Scarlet, Thigh High 20-30mmHg AU$90+
Flat-heel lace-up khaki boots: Rivers AU$25
Wedge-heel dove grey ankle boots: Rivers AU$25
Necklace: Rare Rabbit Gift.

Done. Now for a nanna nap/coma sleep. And dreams of pretty boots!

Michelle :)

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $2,000, keep donating and hopefully we can reach $10,000.

Friday 23 May 2014

This week I rocked because..... Episode 8

Okay so it's been a while. Life, illness, and the like all got in the way of maintaining a regular segment on the blog. But I feel like now really is the time to bring it back. With my health still swirling around the drain and the current political discourse in our country, it is easy to feel overwhelmed with a wave of ennui, or frustrated, murderous rage, that is thwarted by your body of patheticness (used to be just 'arms of patheticness' but as it's spread I think the use of 'body' is far more apt).

Regular blog readers or FB followers will know that my health is, well...really there are no nice words to describe it of late. The fact that Mr Grumpy forced me (literally drove me into the carpark to make the appointment not telling me what he had planned) to go try out a powered wheelchair, suggest he may have seen through my carefully concealed decline. So it is time to focus on some of the small victories that have been swamped by the blargh.

Despite the decrptitude, I have had some highlights where I pulled a rock star performance from my nether regions to shine for an hour or three.

This week I rocked because....
  • I baked bread from scratch. Spelt, walnut and oat. Yum. Sure there was payback, but the smell of that loaf baking in the oven was worth every minute of ugh.
  • I managed a 2 blog posts. When I've had days doing more mouth breathing than conscious though this past week, that's worthy of excitement.
  • I tidied my bedside table. All my pills are in their boxes. The empty packets in the bin. The 78 hair bands back in the bathroom draw. Even my puke bag is neatly compacted on the table. 
  • I have managed my lawn laps 3 days in a row. Admittedly there were stops. Half way through I may have thought I was a crazy woman for trying to make my limbs move whilst swallowing down mini-voms. But I did it. 
  • I have made myself go out and look at the sunset. To just appreciate the beauty of the sky. Looking up is kinda nice. 
So tell me, how have you rocked this week?
  • Feel free to share with anyone else who you think may benefit from recognising and celebrating, just how much they've rocked this past week.
Michelle :)

Sing it Pharrell!

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $2,000, keep donating and hopefully we can reach $10,000.

Thursday 22 May 2014

Them and Us.

The world has been turned into the domain of black and white. It is Us and Them. It is worthy and not worthy. Good vs Bad. Once upon a time there was grey. Once upon a time we realised that the world wasn't quite so simple. That the land between good and bad was peppered with infinite variety. We understood that most of the people we encountered, most of the issues in society were to be understood on a scale of grey. But the grey is now gone.

Society has put on it's blinkers to avoid the complexity that surrounds and inhabits. We want our information in 140 characters. Short. Simple. And to the point. We don't want to think. We don't want to question. We don't want to consider that perhaps the slogans of our politicians and public commentators aren't actually true. It is much easier to understand the world through the lens of Them and Us.

Them are evil, lazy, illegal, undeserving, unworthy.

Us are good and virtuous.

Us are nothing like Them.

We don't want to see Them as people. We give them titles instead. Disabled, Poor, Boat People, Homeless. Scum, Illegals, Bludgers, Scroungers, Slackers. Sometimes we simply give them numbers. Them become dot points on graphs and statistics trotted out by our politicians day-after-day-after-day. Say it enough and we believe. We dehumanise. Labels allow us to distance ourselves from Them. We can sit back and say that'd never happen to Us. We're not like that. Labels and numbers allow us to say and do things we would never say or do to someone when face-to-face. We can forget. It's not our problem. Why should We have to care about Them?

Instead, we must protect Us against Them. We must punish Them for their wicked ways. Or ignore Them. Or call Them names. We can scape-goat Them for everything and anything. We can blame Them for our ills.We can blame Them for their own ills. We can blame Them for our treatment of Them.

We have lost the grey and we have lost our humanity in the process. We refuse to acknowledge that it simple isn't that clear cut. We refuse to believe that one day we could become one of Them.

I am tired of hearing about Them. I am tired of how we can simply ignore others because we can't relate to Them, because we believe that they are so unlike Us. That they are so Other. And therefore deserving of their circumstance.

We have drunk the Kool-Aid. We went back for a second round, and sucked it down with glee. Because that is easy. That is safe.

We have been sold a lie for political expediency and self-protection.

But there is no Them and Us. There is simply Us. Simply humanity in all it's infinite variety. And that humanity is shared even though there may be difference in look, or voice, or ability.

We need to re-embrace all people as Us. Only then can we reclaim compassion. Only then will we attempt to understand. Only then will we act. Only then can we truly move forward as the society that we claim we want to be.

Only then can we leave a world fit for our children to inhabit.

Only then can we leave children who are fit to inhabit the world.


Wednesday 21 May 2014

Blood Pressure and Heart Rate: How often do you measure?

Today I am answering another question I am commonly asked. How often you measure your blood pressure and heart rate is dependent on a number of features which will be unique to each patient. Here are my tips based on my own experience. No doubt my fogginess has missed some I will think of later. But if anyone has any others please feel free to add them in the comments.

I should add I'm not advocating a particular brand or device. It's worth working out a) what you can afford, b) having a chat with your doctor as to what they recommend, c) reading up on some online reviews, and d) asking on forums for what brands and styles others have found useful.

(Note: As always I am not offering medical advice of any sort, and not recommending any treatments.  A brain fogged woman sitting on her couch in her flannelette pjs, taping away on a keyboard, whilst binging on macarons and salty chips, is not a substitute for professional medical advice. All medical decisions, including treatment options, should be discussed with your primary treating physician.)

When I first became ill I was having rapid drops in blood pressure and both it and my heart rate were oscillating continuously. I had no idea what my body was doing and Dysautonomia was simply a word on a page. With months between specialist appointments I had no one to ask if what I was experiencing was a normal part of the disorder or if I was actually about to die. It was a scary time. I'll admit I became a bit paranoid and hypersensitive to every little fluctuation or twitch I felt.

What was that?

Oh crap!

Mr Grumpy, come and feel my pulse!

This doesn't feel right.


One day I was in my local chemist and I spotted a blood pressure machine sitting next to bench where I was waiting for my Florinef. It had a large Come in Michelle sign, as Mr Grumpy calls a sale sign. I ummed and ahhed. Wanting to pick it up but not wanting to admit that I wanted to pick it up. The pharmacist came out with my pills and caught my checking it out.

Do you want to have a look? They are a good machine.

Okay. I guess.

Is it for your grandmother? 

Ah, no. It's for me?


*Insert confused look*

Yet again I was faced with the fact that I was living in a world where my lack of blue rinse and hip replacement made me the odd, younger woman, out. After a quick demonstration, I grabbed the box in shaking hands and sheepishly took my purchase to the check out at the front of the store and headed home.

The family of course thought it was a hilarious new toy and everyone took turns trying it out. In truth it was probably good for my kids. They would take my readings in the middle of doing my exercises.

Hey, Mum. You have the heart rate of an elite athlete. 

And then they would fall down holding their stomachs and laughing, thoroughly impressed at their amazing joke. 

Those early days I took my blood pressure and heart rate frequently. I was so worried about my what my body was doing and back then information was quite limited. So I lived in a perpetual state of hypervigilance accompanied by the frequent whir of my blood pressure machine as the cuff inflated. Soon I was developing a bruise on my upper arm and had multiple long lines down my bicep where my flesh was being squished each time. But taking those readings helped me to feel in control of my situation and I was happy to live with the collection of marks on that poor arm. What I didn't realise was that I was becoming so focused on readings it was making my anxiety worse.

Looking at my dusty machine sitting next to my bed today it's hard to believe how I could have gone from one extreme to another. Continual monitoring to rarely monitoring. Every 3 seconds to once in a blue moon. When I speak to other long term patients it tends to be a bit of theme. Those early days are so fraught with fear from the unknown and all these years later I can't even be bothered all that often. It's too much effort to go into my bedroom and grab it so I just ride out whatever symptom prompted the idea to get it in the first place.

It is easy to become obsessed with readings (puts hand up) especially if you don't have a good support team, medically and personally, around you. Anything for control and understanding. Anything to make sense of the weirdness that your body throws at you. But at some point that focus can be destructive. Constantly focusing on numbers, especially when they don't correlate to what we are feeling can leave us more worried and confused. We are fed so much misinformation, or no information, from doctors who are unfamiliar with dysautonomia, that we often feel we can't trust when they say the classics.

It wont kill you

You're heart is sound.

That reading is impossible.

*The last is my all time favourite. I have been told that my readings aren't possible, only to find them entirely accurate during an arterial bp and on continual cardiac monitoring. Our normal is often frequently abnormal. And not everyone can wrap their head around that.*

Often this is also accompanied by that little voice that resides in our mind and whispers,

What if this time it is a problem?

Who says illness isn't fun?

Am I saying you shouldn't check your readings? No. But it is about balance. Readings can be very helpful in certain situations. In others not so much. 

So when do I take it?
  • Initially it is important to establish your normal. And that normal can be very different to other patients. Working out your normal will help in establishing when you need to worry. If you normally run with a bp of 90/70, 110/70 (which technically falls in the normal range) may be high and leave you feeling worse. The same goes for hr and even temperature. If for a month or two you take some frequent readings eg morning, noon and night, lying, sitting, standing. It will give you an idea of what your particular form of normal is. 
  • Take that information to your doctor. This will give your doctor more of an idea of what is going on. If you graph it, and there are many apps that will do this, it also makes it easier for you and your doctor to investigate patterns. For example, mornings are hard for many and they can wake with very low blood pressure. Knowing this is a common theme can mean that you implement some techniques to try and alleviate this. If afternoons seem to be your worst time you may instigate a different plan to address that time.
  • Before going to a standard appointment. When I have an appointment coming up I still tend to take some readings just so I can give my cardiologist a baseline of how I've been going. It is nice to have readings/data to fall back on, instead of trying to simply explain what is going on.
  • Starting a medication. Even now when I start a new medication I take a week of pre-starting and measure for a week after. This can give you and your doctor an idea of whether or not a medication is working, or even becoming problematic. For example, when I started Clonidine I felt off. I was exhausted and my mood dropped. When I rang my cardiologist to say what was happening I had a set of data to show that my blood pressure was dropping lower and lower and more rapidly with every dose. The combination of that data and my self-report meant that my doctor was happy for me to stop immediately.
  • If I feel really out of sorts. This is something that I'll do periodically if my symptoms are either far worse than normal or abnormal even for me. This was really helpful when my heart moved into bradycardia. Not only did I feel like death, my heart rate revealed that. Again it was data that I could send to my doctor and led to a quick response. 
  • But for the most part I rely on how I feel. If I feel sick, I feel sick. Whatever my reading it doesn't change how I feel. For me relying on how I feel as opposed to any  numbers on a machine has been freeing. Months can go past in between readings. I tend to know when I need more fluids or more salt, or some extra Florinef etc based upon how I feel. If I am just feeling normal sick measuring doesn't even come to mind.
  • Often with dysautonomia, blood pressure and heart rate are not reflective of how we feel. 
    • Some of this is due to the fact that our cerebral blood pressure can be different to that measured by an arm reading. 
    • Part can be attributed to the frequently oscillating blood pressure which many patients experience and can only be caught on continuous monitoring. Which means it can be pot luck if we catch an accurate reading. 
    • Alternately, if you have particularly low pulse pressure some commercially models will simply read ERROR as they are unable to pick up such a faint pulse. 
    • And programs that rely on a finger reading (often available via a PulseOx or Smart Phones) are unreliable as they register movement, or if you have poor peripheral perfusion fail to even register that you have a finger (I set PulseOxs beeping in hospital every time and one physio joked that I looked really good for someone who the PulseOx said was dead).  
  • You get what you pay for. Like compression stockings, the more you spend the better the quality. When buying a machine the more expensive the more accurate and often the more options are offered (eg keeping a record of readings, compensating for arrhythmias). 
  • Make sure you have the correct cuff size. For example, I am a paediatric to small cuff size. My arm was measured to ensure I had the right size as wrong sizing can lead to incorrect readings.
  • Learn the correct way to put on the cuff. There are online instructions (eg here) for taking an accurate blood pressure. Incorrectly placed cuffs will give you no reading or incorrect readings.

  • Take your machine into your next doctor appointment to ensure it is correctly calibrated. Not all machines are accurate, even when you pay good money. It is simple to take it into your doctor's office and compare it to their manual and automated readings. You can also ask to be shown the correct way to take a blood pressure.
  • Get you machine serviced every year. This is something I didn't know until recently. Most companies or medical supply companies can provide this service for a small fee. You should also get your cuff checked as they can develop small holes as can the tube. 
So those are my basic tips. As always, follow your doctor's instructions as every case is different and your doctor may wish for you to monitor your blood pressure and heart rate for a range of reasons specific to your case.

But overall, my tip would be to not let it consume you. The more we worry the more we stress and the worse our symptoms. Dysautonomia is a chronic condition, which means that we'll be living with this for quite some time if not for the rest of our lives. Finding ways to balance our medical necessities with quality of life is so very important.

Michelle :)

Sunday 18 May 2014

The Dumbening

I feel like the dumb is strong of late. My brain simply isn't up to scratch. I'm not sure if it's the exhaustion, the lack of blood flow to my brain, medication effects or any of the other multitude of potential causes. I'm trying to avoid the 'it-could-indicate-a-worsening-of-things' line of thought, so we'll skip that one. But whatever the cause I feel like I'm walking around with a head full of cotton balls rather than a squidgy ball of grey matter.

I can pump out a blog post. Though the first draft looks like Freyja has jumped all over the keyboard. I can put up a FB status. I can even sort-of-kinda put up a photo on Instagram. But make me respond to something, a question, someone else's blog post, FB status etc, and it's crickets.

To try and fine the words to respond to an email in even a slightly coherent manner is getting harder. I read and re-read a paragraph in a message and still am left going, "Huh?" I go to respond and I'm having to go back and re-read the message again for the 80th time to make sure I understood. Then it's the hard part of putting the words together to make a response that doesn't sound like it has been created by Google Translate.

I'm finding it tough to deal with. Blogging is simply purging what is already in my mind. But responding takes understanding and active thinking. If something requires analytic thinking and response I might as well just put on my hat and head for home. It is exhausting and more often than not beyond me.

I want to respond to comments or statuses but instead sit staring at the monitor unable to put together a response.

So I find myself hibernating more.

I try to read a book and am exhausted and have forgotten half the text by the time I get to the end of the page. I know by the end of this post I will have forgotten how it started.

I hate, what I now call, The Dumbening.

I went to a writers workshop a couple of weeks ago. The idea was to talk about translating life to memoir with a focus on illness and disability. We were also asked to prepare a piece to bring in, read aloud and then have the groups critique it. And then The Dumbening hit and it went a little like this:

“Would anyone like to share?”

I sat there looking at my page of 12 Times New Roman and chickened out.

“Would anyone like to give feedback?”

Yes. But. Ugh. Words. Thoughts. What? Maybe I'll just slump back down into my chair and let everyone's words wash over me.

All through the reading I had thoughts. I'm sure they made sense back then. But already they are gone. Should I open my mouth and speak? Will it come out right? What was I thinking? Oh god, I'm just going to sound stupid. I have no idea. Just hide. Fade into the background. What am I doing here?

Concentrate. Concentrate. There you almost had it. There was almost a thought.

And that is how it goes now.

The Dumbening has hit and I am floundering. 

It's hard to communicate and participate in life when I can't respond to simple questions. It's makes me feel less. And I am very aware of how dull I sound. Conversation is worse. But now even written communication is getting hard. I have started to avoid things, and I hate that. My confidence has taken a beating. As has my sense of self. And some days it makes me want to crawl into a corner and howl.

I wish I knew the answer. I wish I could turn it around. But so far it's just another "you'll have to learn to live with it" moment. 

If my brain was functioning better I'd come up with a great description of my mental angst. But for now I can only give you a pithy,



"Down by the seashore,
the waves are bigger then normal.
I asked you if I could flicker out,
you say "don't think so".
I just want you too believe.
Even though I know its impossible for me."

Thursday 15 May 2014

A funny thing happened at Parent Teacher Interviews.

Last night I had one of those moments. One of those moments where you realise that you have become used to being invisible or less in an able society. Since I've been using a wheelchair I have been faced with the extremes of living with disability in a society where I am seen as different.

I've been abused by an elderly gentleman who found my very presence an affront to his delicate sensibilities. Ignored in more shops than I can count. My chair has been grabbed and I have been moved like furniture. Or if bumped into, I am given a glare for daring to be in the way. I have been treated like a child. As if I am cognitively impaired. Or that I am extremely hard of hearing. All of it combines until it becomes very apparent just how little society is set up for those with a wheelchair, or other difference, and just how uncomfortable many are with our presence.

Somehow we become intimidating by simply being. People don't know how to approach us so either abuse or avoid. We are the bogey monster, the other, the reminder that perhaps it could happen to them.

I have given up on expecting that places will be accessible. Even when I am told they are, I have found that individual ideas of accessible vary greatly. Even the motel we stayed in when we moved told us the room we had was accessible. And sure it was, once I was inside. The step at the front door, not so much. So when I rang my son's school to ask if I would be able to attend his parent teacher interviews I was pleasantly surprised to hear that, no the interviews wouldn't take place in the classrooms many of which were on the second floor. Instead they were to be held in the school hall which had a ramp for access.

However, arriving at the hall I was disheartened to find that a) one of my son's teachers was up on the school stage, accessible only by stairs and b) that the room was tight packed and I wouldn't fit between most of the desks and chairs.

It's hard to explain the level of disappointment and sadness you experience when you realise that you can't even do the basics like attend your child's parent teacher interviews. Parenting with chronic illness and disability is hard at the best of times, and frequently fraught with guilt. Sitting just inside the doorway of the hall I felt my heart sink. Once more my difference made the simplest of tasks impossible.

I was resigned to the fact that I would have to sit next to the waiting chairs whilst Mr Grumpy went and spoke with my son's teachers. Standing out like a sore thumb. Because resignation is familiar. I get tired of having to ask, or make a point. I get tired of educating the uneducated. I get tired of always feeling like a burden. I get tired of feeling different. I am tired of fuss. Sometimes it is just easier to sit in the corner and accept that this is just the way it is.

But then a funny thing happened.

One of the teachers came up and mentioned that there was a table available where I could sit and have the teachers come over to me, if that made things easier. That the teacher who was up on the stage would come down to chat to us. That they had seen my need and acted. And all of it was no hassle.

I realised I was overcome with gratitude. And that the gratitude was out of proportion to the event.

I couldn't count the amount of times I said thank you.

I couldn't stop saying to Mr Grumpy how nice it was.

Why was I gushing over such a minimal act?

Because I am so used to no one caring. Or when help is offered it is either begrudging or infantalising. It is sad that I should be so grateful to this one teacher for seeing us struggling and offering a simple solution.

Because I am used to a world where I am abused by old men or ignored or mocked or demeaned or....

A world where I am patted and spoken too like I am in a segment of Play School.

A world where I am an inconvenience.

Because those are your choices when you are different.

Sitting in the school hall chatting to my son's teachers I realised that I am so used to the negative that any positive experience becomes heightened and takes on an importance out of keeping with what in truth is a simple act.

I am grateful to my son's school. But it does make me wonder why, if it is so easy for them, is it so hard for the vast majority of society?


Love this End the Awkward campaign by Scope in the UK. Loved Alex Brooker after seeing him on The Last Leg. Come on Australia, time to do a similar campaign here.

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $2,000, keep donating and hopefully we can reach $10,000.

Thursday 8 May 2014

5 minute purge.

Periodically I do a 5 minute mind purge to help me cope. It's a bit like the valve on my mental kettle. I don't care about spelling or punctuation. The idea is to just get it out.

I'm still not picking up after the weekend's ER visit. Life is falling by the wayside. Promises are broken. Commitments not met. And after sliding down the door to my bathroom again today and feeling worse than I have in quite some time, I just needed it all out. 

Flair, crash, gigantic crapfest. Feeling like I'm flailing in quicksand. Lying on tiles. Grabbing walls. Crawling from the bathroom. How did it come to this? Vomit, crap, shake, slur, pain. Drag myself up as my body drags me down. Tomorrow is another day? Yesterday was a tomorrow once. As was today. Don't silence me with your discomfort. Don't treat me like I have no clue. Don't mistake my emotion for giving up, for depression, for weakness. Don't tell me it'll get better. Don't tell me to have hope. Don't tell me. This is a moment. My moment. Not yours. My moment to feel it all and express it all. I will be done when I am done. Not when you feel it is enough. I will raise my voice and shake my fist. This is my story not your story. My day, day after day after day. I will not bear the burden of your discomfort, because my suffering is too much for you. Because my grief and pain is too much for you. If you cannot bear to listen for five minutes how do you think I can bear to live with this day, day after day, week after week, year after year? You want release? So do I. Stop telling. Stop shoulding. Stop silencing. Just stop. Just be with me. Just listen. Just let me rail. Just let me cry and yell and scream at the injustice of it all. Let me voice it all and purge my spirit. Be silent. Be quiet. Be still. I don't want solutions. I don't want pity. I don't want your sorrow. I just want.

Feel free to add your own 5 minute mind purge below. Don't worry about spelling or grammar just get it out. You can be anonymous if that feels easier. 


Monday 5 May 2014

The machine that goes ping.

"There are no cardiac services available on weekends."

There's a pause and Mr Grumpy repeats my symptoms trying to get through to the voice behind the desk.

"We have no cardiac services on the weekend!" The exasperation in the disembodied voice increases with each repetition.

It is clear we are thick. That we should have known. Heart emergencies should only occur Monday to Friday.

Once more I hear Mr Grumpy trying to explain that I need to be seen. I hear him list off my symptoms yet again. I hear the sharp intake of breath and feel the change in his stance behind me. I know he's trying to maintain his cool. Yelling wont help, but I can feel the increasing tension as the angry voice behind the desk declares once more,

"We. Have. No cardiac services on weekends!"

And all I can do is sit.

I am stuck face-to-face with the wall that is the front of her desk. Uninspiring blue-speckled laminate. Battered laminated signs are intermingled with small black scuff marks and some questionable brown smudges. Even in the ER it is clear that the world is not made for wheelchairs. My head is a foot below the desk window. I can't even see the face of the irritated woman barking at us.

When it became clear that we aren't budging the voice leaves. Returning shortly with a nurse.

Two minutes of questioning and I am triaged straight through.

And here I am again. Looking up at the same white ceiling. Surrounded by the same blue curtains. Answering the same questions. Seeing the same confused looks.

I begin to list off my history only to be told, "that's enough". My history is too long and too complex.

So I lie there as the staff bustle around. Mr Grumpy moves from one side to the other trying to find a spot where he's both out of the way and available to explain when words fail me. He's the calm voice in the chaos that can stop them when they get it wrong, or grab my hand when he sees me falter.

Lying on the bed surrounded by rapid fire decisions and procedures. No time to process. Just lie still and let it be done. ECGs are ordered. Bloods taken. Veins blown. Nurses in and out. A friendly nurse tries to alleviate some of the tension by chatting in between tests and instructions. The doctor heads out to contact my cardiologist three hours away. And I must sit and wait.

Dehydration is a given. My lips are cracked and splitting.

Yes I drink. Yes I drink enough. Three litres today. I take volume expanders and pee stoppers. A glass of water wont do it. It's part of my disorder. But that's not why I'm here. Wait.

And then they are gone again.

Finally the doctor returns. She's spoken to my cardiologist. My ECG is normal. I need fast fluids. Then she'll talk to my cardiologist again.

I'm lying in the ER, being managed from three hours away. Because there are no cardiac services on weekends. It plays like a Monty Python sketch, "I'm sorry, Madam. We only do heart problems Monday to Friday. Now if you have a silly walk...." And in the background I could hear the machine that goes ping.

I lie listening to the long criminal history of the prisoner behind the curtain to my right. No privacy in the ER. If you miss a minute it will be repeated soon. The same questions. The same answers. Again and again. My answers repeated for whoever is in earshot. No dignity. No secrets. My life laid bare for all around me. Our communal stories floating through and above blue curtains. Mingling our misery with the more mundane stories of day-to-day life of those around us.

The two burly prison guards are discussing their home buying adventures. The police are taking statements. The doctors are discussing the woman with severe dehydration, the guy with the broken ulna, the old woman with low blood pressure. A Cat 1 is en route. ETA 10 minutes. The staff have just ordered pizza. Another is in the break room. The guards' radios sqwark. Someone laughs at a joke. Someone is crying.

I just want to go home.

Mr Grumpy points out my hairy gorilla legs where two of the ECG dots sit. Focus on the ridiculous to forget where you are.

The dots on my chest begin to itch. Meditation isn't working. The nurses are asking the guy next to me to rate his pain. A metallic voice overhead announces a MET call. And the ratchet sound of the IV pump continues on beside me.

The fluids fill my veins and I count down the minutes. The pain in my neck starts to fade. The abnormal beats in my heart don't reappear. There is no re-run of the jolts that left me gasping at home. The blown vein in my right arm hurts every time the blood pressure cuff inflates. Bruises are a given. And home is looking more and more inviting.

More discussions with my distant cardiologist. I can go home. Follow up tomorrow. Friendly nurse takes out cannulas and extricates the wires from my knotted up gown, before disappearing behind the blue curtain once more. We grab a copy of my bloods and I slowly redress. I pour myself into the chair and we open the curtain. The prison guards look slightly bemused at the woman in the vibrant pink dressing gown and sparkly red slippers who appears before them.

The nurse presses the button to unlock the door and we are allowed to leave.

The front desk is empty. The angry voice no longer there. There are others in the waiting room but in my exhaustion I couldn't tell if they were male or female. Young or old. I feel like wishing them luck. Hoping that the angry voice has gone home and someone new has taken over for the night.

The cool night air is freedom. The car park empty and silent. And I can breathe.

Back at home my shoulders relax. The relief is palpable. My son so used to my illness, simply asks if I had fun. I'm still exhausted. I still don't have answers. But more duct tape has been added to hold me together. A review of my bloods reveals that they aren't as normal as I was led to believe. I put them aside too tired to care. That's tomorrow's problem.

But I do make a mental note to only ever schedule heart problems, Monday to Friday. None of this inconvenient weekend business.


Don't forget to head on over here and donate to Dysautonomia Research here in Australia, at The Baker IDI. Lots of exciting research occurring currently and more projects on the way.