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.

Michelle

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.

Undone

Undone by two mint plants.

Lying in bed today it seems farcical. Farcical and somehow totally appropriate. I looked at them tonight in their shiny metal pot. So unassuming. I ran my hand through the chocolate mint and it's bully boy cousin, the common mint. Inhaling their scent from my fingers. I breathed in deep, sucking in each and every last molecule of scent. They owe me that. Taken down by two herbaceous hit men, that I dared to re-plant. I'd laugh if the consequences hadn't been so unpleasant.

After fighting so hard all weekend it seems so anti-climactic that this was the left hook that lay me on the hallway tiles. I'd fought rounds with pain, with my blood pressure, with my dehydration. Each time the bell would ring I'd get back up on my feet and stagger back to the centre of the ring for my next beating.

I told myself I was winning. I had it in hand. There was a pattern to the punches. I'd fought my opponents before. I knew all their tricks. I saw the dip of the shoulder before the punch, the planting of the feet before the upper cut came my way. I ducked and weaved like the best of them. Float like a butterfly, sting like a bee. I had them on the ropes.

Then I dared to replant two small green plants.

And I didn't even see it coming.

As I slid elegantly down the wall in the hallway and called for help, I knew I'd lost. I felt it in my bones. In my skin and the hair on my head. From my toenails to my eyelashes, the bitter taste of defeat. It sprang from my pours and filled the room. The tears that spring reflexively when you know that you've lost.

Loser. Failure. Loser. Failure. LoSER. FAILURE.

The words get louder with each passing second. I list off my failings one by one. I beat myself up for not being able to manage better. There MUST have been something I could have done. Something which would have won the round. Something I should have known. Something I should have done. Something....

The trip to the ER seems to take forever. Purgatory. I begin to doubt myself. Maybe I don't need to go. Maybe I'm over-reacting. Maybe I just need to lie down for a while. Drink some more water. Take some more pills. Maybe I should say, "Turn around. Lets go home. Only the sick people go to the ER." If only I could form the words. Denial and doubt are belied by my blue lips and slurred words. By my inability to lift my head or walk. But those internal demons, born from a childhood where illness and needing help were a weakness, whisper their vindictive words. They beat me up as badly as my body. Worse. They know the sweet spots, the secret places that hurt the most. Harden up. Hypochondriac. Suck it up. Push through it. You're so weak.

Part of me baulks even as the automatic doors open up at the entrance to the hospital. Part of me expects the triage nurse to tell me to go home. That I am wasting her time. That there are real sick people who need help. But she's kind and concerned. She takes my vitals and listens to my story. She tells me it must be horrible to live like this. That the doctors will sort me out. She gives me the code words that'll break through the barrier that exist between doctor and patient. She tells me not to worry. That it'll be okay.

I sit in the waiting room, floating in and out as I lay my head on my knees. Scraps of conversation. A prisoner, an assault, a guard in for testing. The boy who's stepped on the nail. The boy who keeps kicking the wall as his mother repeatedly asks him to stop. The beep of the door each time it opens. The woman at the desk apologising at the wait. Car crashes, cardiac arrests. Real sickness. Real emergencies. It'll be soon. Maybe we should just go home.

Then the doctor is there and we gain entry to the other side. Faces. Faces filled with pain, uncertainty, confusion. We pass them one after the other. The burly guards standing just inside with the prisoner handcuffed to the bed. The lights so sharp. The stiff white sheets of the bed. Relief as I can finally lie down. Sleep. I just want sleep. I could sleep for an eternity. Questions. What's wrong? What are you concerned about? What have you eaten? The code words fail. My list of medications and diagnoses fail. And the finger sensor beeps again and again as my bloodless fingers fail to register. My blood wont flow for testing. But the questions continue. How do you spend your day? You have what?

A blur of slurred words and half-formed sentences. So hard to think. So hard to concentrate. A hand holding mine. An intake of breath from the hand holder as he tries to explain once more that all I need is fluids. Finally the miracle, a second doctor and an acknowledgement that I know more about my conditions than they do, and the needle is finally inserted. A rebirth after the IV starts to re-inflate my empty veins.

Blue on my lips and blackened eyes remain, but the clarity returns. Snippets of conversation filter through the curtains. The old man and his wife. His third stroke. They know their way around. The woman back from an overseas trip with a weird viral infection. The horrible crashing sounds as the man across from me seizures. Staff running. Codes called.The girl with the broken shoulder, bent over in pain.

Do I belong? The girl who fell down because she potted two plants.

We come to an agreement. I don't need to be admitted. Flooding relief. That there is nothing more that they can do for me. I am released. A buffer in my veins. Extra padding to make it through the next few days where I can practice my left hooks and upper cuts once more.

I roll out past the broken and the scared. Faces peering at me over blankets. I wish I could take them with me. A mass escape from flashing lights and beeping machines. An escape from pain and fear and uncertainty. Relief as the door comes into sight. Freedom.

Rolling through the carpark. It's only inhabitants in the wee hours of the morning. The silence is only broken by the heavy breathing of the weary and the crunch of my wheels on the gravel. I can speak. I can sit up. I am nolonger blue. But I am still broken.

As we drive home I still don't know if I should have gone. Maybe I could have managed at home? Maybe the fluids would have eventually stayed in? Maybe I could have taken an extra pill? Maybe I could have allowed my hand holder to sleep.  Maybe....

This evening I sat out in my backyard and surveyed my small world. Those deceptively dangerous mint plants are thriving. Mocking me with their runners and verdant green foliage. The other pots sit there waiting. Daring me to come on over and plant them.

I have slept the world away today. Waking only to drink and have tablets. Storing up strength. But fresh air is tempting. The sky needs to be seen. The grass needs to be felt.

As I sit in my chair I start to feel dizzy. I look down at my feet and their bright blue, bloodless, toes. I see the blue tinge head up my to my ankles and take a deep breath. If I don't look in the mirror I wont see the blue start around my lips. It's not that bad. If I lie down I'll be fine. I stand slowly and walk cautiously across the lawn. Heading for bed again. I'll win this round.

And this time I wont be undone by a herbaceous heavy-weight champion again.

Michelle

"Should I go to the ED?" and other dumb questions I ask myself.

(photo)

Yesterday was a bad day. And a bad Bob day is not a day I would wish on anyone else. On reflection I should have gone straight to the ED. Hell, even today my vitals are probably still worthy of a check. But no, I sat (read: flopped, clutching my chest, going a delightful shade of grey) on my couch and ummed and ahhed about going to the ED.

Why oh why do I do that? If anyone else told me their heart rate had dropped to 40 and their diastolic had jumped up to 113, I'd be straight onto 000 calling an ambulance. The fact that this didn't change in the slightest for about 2hrs was still not a reason for me to head into the ED. At this point even I can hear the lyrics to Smash Mouth's, Allstar...

She was looking kind of dumd with her finger and her thumb. 

In the shape of an "L" on her forehead.

...playing in my mind.

And it is stupid. I can admit that today. Yesterday, not so much. Oh sure there was that little voice screaming at me to go straight in but I silenced that quickly with a big ball-gag of denial. Instead I rode it out. I drank my body weight in fluids, wept a couple of tears in the privacy of my bedroom, and deluded myself that getting my heart rate back up into the mid 50s meant I had over-reacted earlier.

Someone once told me the world is gonna roll me

I ain't the sharpest tool in the shed.

The conversation in my head went something like this:

It's just a dip. The switch will go off and it'll stabalise. Okay so it's going on a bit longer than I expected. But it does that every now and then. I'll see if anyone has any tips on Facebook. I know everyone is saying go to the ED but I'll give it just a bit longer. Hmm that chest pain's a bit intense. Wish my neck and left shoulder weren't aching so much. Probably just a strain though. I'm obviously over-analysing things. Maybe I should give my inlaws a heads up that I may need to go in? But I know they'll worry. I can't deal with worry. I'll just keep and eye on it. Damn I feel crap, but sure as eggs I head into the ED it'll start to go up and they'll look at me like a hypochondriac. Plus the wait. Ugh. I hate the wait. Plus the germs from all the other sickies in there. I don't need another infection.  I'll just wait it out. Damn heart just stop with this stupid pain business. Ooo look my heart rate has nearly hit 50 I'm improving! No point going in now. Anyway, I really don't want to go through the whole explanation thing AGAIN. The hassle of the ED just isn't worth it. How do I explain that my normal is abnormal or that my abnormal looks normal? Or that there is a huge difference between lying and standing obs? Might as well try and hold an octopus into a string bag. It's just as futile. 50's not bad anyway. I've had worse. And my cardio is on holidays so they can't call her. Plus Mr Grumpy's away and the kids need to get to school. And the dogs will go ballistic alone in the house all day. I can't afford to stay overnight if they do find something. It just wont work. Too much hassle. I'll just drink some more and maybe sleep for a while....Look I made it through the night. I OBVIOUSLY didn't need to go into the ED after all. Harden up, Princess. Bloody drama queen.

Yes. The dumb is strong in this one.

But that's how it works in this deranged old mind of mine.

When you are sick 24/7 your idea of what is ED worthy becomes skewed. My everyday health especially my heart rate and blood pressure would send average healthy folk running to the ED. Basically, I live in 000 (the emergency number here in Oz) territory 24/7. If I went every time it bottomed out or went too high, or I lost feeling somewhere, or it felt like someone was forcing a railway spike through my head, or any of the other daily crap I deal with, I might as well just set up a little camp site in a corner of the waiting room as I'd simply never leave. Overtime it's become harder and harder to discern just when I should worry. Even talking to my cardio about this very issue a while back, she was hard pressed to give me guidelines as to when I really should go into the ED. And stupidly I always think of the ED as a place for people who are really sick, not when your sick is just an extreme of your normal sick (I really need to be studied for my high level of stupidity).

Add in that a trip to the ED is also a crap shoot. The chance of getting a doctor who understands, let alone has heard of your condition is slim. Trying to explain the complexities of your health and why the vitals or bloods they are getting aren't good is often an exercise in futility. Will they believe you? Will they call for a psych consult? Will I even be in a fit state to articulate any of it. Lets face it EDs aren't designed for complex conditions. If it bleeds or it's broken they are great, but when your needs are complex it can become a nightmare. I do respect those who work in the ER. It's not a job I'd want. Having a sister who used to be an ED NUM I know only too well what she has put up with over the years. And I understand I am complex. I still remember the look on the poor registrars face when I did my last disc and she was asking me about the sensation in my leg. Widespread neuropathy does make it a little hard to assess. Needless to say she ran off to confer with the consultant a bazillion times. In reality it's hard work on both sides of that breezy hospital gown. But all of it ends up with me preferring to dig my eyeballs out with a rusty spoon than go to the ED for treatment.

Add in the responsibilities of children and families and all that malarky, and I end up with a conversation of stupidity running through my mind every time.

Plus I'm tired. Really, really tired of this sick business. I actually can't recall the last time that I felt well. I can't recall when I didn't hurt, or feel nauseous, or dizzy or all the rest. And that kinda sucks. And I am over doctors and tests and all the other medical paraphernalia that you have to deal with when you are living with a complex chronic condition. Makes me a bad patient and my own worst enemy at times.

Now if ED doctor's looked and sounded like Dr Kovac on ER (does that show my age?) well I may just change my mind about ED visits. Because even a crappy "it's all in your head" would almost be worth it spoken in his delicious accent. Maybe I could put that in the hospital suggestion box?

(photo)

Back to bed I go.
Michelle :)

Given how extra exhausted and brain deficient I've been the last few weeks, maybe month, I do now wonder if I am living more in Bradycardia. I don't usually take my readings unless I'm particularly crap or something changes so not sure. May be time for some more regular readings.