Wednesday 30 April 2014

Coming up for air.

Should you write when you are in pain, on pain meds and exhausted? Probably not. But when has that ever stopped me? I am not online a lot at the moment. Each time I think I am ready to get going again I am quickly disabused of that idea by the pain that leaves me gasping for air.  I'll get there again. I can see the emails piling up. Get on, reply to one, and down I go again. So bear with me. Pain is an evil beast. 

Down down down. Then coming back up for air. Before the slow descent back down. Tired. Pain. My back has gone out again. Again. Yet again. Once more with feeling. A feeling called pain. An emotion called frustration. A body melting in exhaustion.

One dramatic sneeze-cough combo courtesy of a bug and here I am flat on my back. Circling the drain and going slowly mad.

Stuck, confined, held down and immobile. Knowing that each day in bed equals ten trying to claw my way back to the normal that is decidedly abnormal. Pain medication to make life bearable. Pain medication to drop my blood pressure. Stand straight up equals some relief from pain. Stand straight up equals plummeting blood pressure. Rock and hard place. Pain and more pain.

Get up. Aggravate that disc. That one. Time and again. My Achilles heel in my lower back. One of many that made a break for it way back when I was still functioning. When I was still working and living. When life gave me a 3mth preview of what was to come. 

40 is the new 80. Or 32 back then. When I still believed in miracles and recovery. The stupidity of youth. The pleasant stupidity of a life before illness become my nine to five. And dreams went down as quickly as I slid down to the floor of my office.

Lying in bed. Resting. Letting the worst of the inflammation reduce. More pain meds. No more meds. Balance the meds. Keep the pain at bay. Convince yourself you can leave it a little longer. Just an extra 30 minutes. No, an hour. You can do it. Lets make it two. Convince yourself you don't need them at all. And then BANG, the chase begins. Pain. Pain that was at bay. Pain that if not tamed was at least placed in a cage. Pacing, agitated behind the bars. Back and forth. Tail twitching. Waiting for it's prey to get complacent. For that first weakness to appear.

It pounces. Rips and tears. And the chase begins anew. No time for recriminations. You must chase and chase and hope that you can get back to the moment when it was caught. Held and tied down with ropes and nets. Until you once more tell yourself that it's okay now. The beast is tamed. You can skip that next one. A hot pack, some meditation and a plucky can-do attitude are all it takes.

Then you begin to drown again. Lie immobile on the bed. Breathing through the pain spikes. To chastise yourself once more.

If only.
I should have.
They were right.

Tomorrow the work begins. Tomorrow the small movements. Like water on rock. Small and slow. Time the best healer. The carver of new paths and new backs.

But till then I will come up for air every now and then. To make sure I am still breathing. That the world is still turning. That there is something to return to. A small glimpse of light and hope. Come up for air to be reminded that it's okay to take the next dose. That rest and sleep are okay. Because pain untended is not heroic. Pain untended is talons and claws. Fire burning. Breath taken. Minds unhinged. And longer recovery.

I'm falling apart. And knitting together.

The broken whole revisited.

The broken whole recreated.

Till the next time.


Monday 21 April 2014

Looking up in suburbia

Easter didn't quite go to plan. Saturday I pushed. As a result, Easter Sunday was spent trying to differentiate between passing out and sleeping. I slept though most of our family phone call to our eldest who was having his first Easter away from home. I was at least there on the couch slurring some words in the general direction of the phone. And today I woke up with tired on top of my tired. And my stomach in rebellion. Oh and did I mention a bladder that has shrunk to the size of an M&M? Drink. Pee. Drink. Pee. Drink.... Dysautonomia, the gift that keeps on giving.

The weather has been grey and my mood matched. But today there was sun. So I dragged my protesting body outside to take in it's warmth and cleanse my spirit.

The garden has always been my bliss. But since the move that has taken a dive. The move from temperate rainforest to sterile suburbia has been a hard change to wrap my head around.

This was my world before our move.

Now it is this.

And serenity is hard to find.

But today I was determined to find a small piece of bliss.

I decided to look up....

....and found my back neighbour's flowering gums.

 And blue sky.

And the gums reached out. Filled with squawking honey-eaters and bright red blooms.

 I put up my red umbrella. And laid out my blankets and pillows.

And I watched the clouds.

I had company in the sun.

And snuggles when it became too warm.

There were Great Dane footrests when my head started to spin.

And company whilst I searched for new books to read.

Now as the sun goes down I am just as exhausted, but happy. Sometimes you are stuck in soulless suburbia and sometimes.... is where you set your gaze that matters. 


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.

You could also head on over to the Australia Writers' Centre and vote for the blog in the Best Australia Blogs Competition.


Friday 18 April 2014


Epiphanies seem to happen in the shower. And good blog ideas, most of which I forget as soon as I turn off the tap and the last drop falls half-heartedly from the shower head. The final splat as the drop explodes on the tiles by my feet, seems to time perfectly with the shattering of the whole perfect drop of idea. How is it that the perfect wording exists for the few minutes you are under the water and then dissipate as soon as you step out? Is it the sensation and the noise of the water finally blocking the outer world and allowing the inner full-reign? Or maybe I am just so hypoxic from the heat of the shower draining all the blood to my feet, that I mistakenly believe I transform into a creative genius as the water falls? Some days the hint remains just long enough for me to reach the keyboard. Dripping wet, no glasses, and typing haphazardly from my very piecemeal memory. I know there are keys and roughly were they should be. I tap away furiously hoping that I am making some semblance of sense rather than accidentally activating Skynet. That I can throw down misspelt word salad just in time to get the essence onto the screen. Some days it works, and other times it is an insensible jumble of nothingness. Today it was melange of ideas prompted by a single song.

Just as I was about to step/drag my protesting body, into the shower Sarah McLachlan's song, Stupid came up on my playlist. And I instinctively started singing along:

Night lift up the shades
let in the brilliant light of morning
but steady there now
for I am weak and starving for mercy
sleep has left me alone
to carry the weight of unravelling where we went wrong
it's all I can do to hang on
to keep me from falling
into old familiar shoes

Old familiar shoes. The story of my life. So often I fall back to what I've always done. Even when it hasn't worked. Even when it has ended up leaving me worst for wear. Since becoming ill I have teetered between trying to forge a new and more positive way of doing things and my old anally retentive, must do everything, all the time, push, push, push, way. That old way has served me well over the years. It's very familiar and very comfortable. In some ways it has worked over the last 8 years as well. It led me to a diagnosis, a good team of doctors and treatment. In many ways it has kept me going through the hardest times. But it has also been destructive in many ways. 

how stupid could I be
a simpleton could see
that you're no good for me
but you're the only one I see

The sicker I get, the more I push. It invites failure. It invites trips to the ER and in the end, a poorer quality of life. How stupid could I be. A simpleton could see. It means that I sat out in my backyard this morning contemplating planting two little herb pots. Even though I have had a flair in symptoms the last few days. Even though today I alternate between wet tissue and chewing gum stuck to the bottom of a shoe. I sat there at war between my need to plant those two plants, my need to win, to say "suck it body you aren't going to beat me", and my need to rest. To pace myself so I can get over this latest slump. Win what? That is unclear these days.

love has made me a fool
it set me on fire and watched as I floundered
unable to speak
except to cry out and wait for your answer
but you come around in your time
speaking of fabulous places
create an oasis
dries up as soon as you're gone
you leave me here burning
in this desert without you

Love has made me a fool. And I do love control. I love it even when it doesn't serve me. I love it when I don't really have it. When I deceive myself and believe that I have it all in hand. When I bow down to that control freak part of my personality and wait for it's bidding. Give myself over to that portion of me that is set on one path and devoid of caring. Just can't win for losing. I love that line from Rob Thomas', Her diamonds. I lose out every time I allow that win to happen. I lose, yet I keep doing it. I am so attached to the win that I can't see the loss until it's too late and I am stuck once more unable to stand or on the cusp of an ER visit. How stupid could I be. A simpleton could see. I push and I push and I push some more. I set myself up for failure. So I can beat myself up for failure. I often enter into the push with complete clarity of what will happen. The monkey on my back that I happily feed every day. You're no good for me, but you're the only one I see.

everything changes
everything falls apart
can't stop to feel myself losing control
but deep in my senses I know

I know things have changed. I know I have changed. I know I can't do what I once did. Control is an illusion. A beautiful, comfortable illusion. Everything changes. Everything falls apart. Then you have to find a way to pick up the pieces and build anew. Because doing the same thing time and again and knowing that it'll never work is the height of stupidity.

I need to follow the Japanese philosophy of Kintsugi where the cracks and the broken pieces are woven back together with gold or silver resin. The breaks, the changes, the history of the piece are celebrated as part of the whole not hidden or despised. And the whole, that has changed, fallen apart and been rebuilt, is loved.

I need to change and move on from the old way of doing things. I need to be kind to myself and stop the stupid that is deceptively attractive. I will slowly put myself back together and let the cracks shine golden. Stories on the path to self-compassion. 

One song. One shower. A jumble of ideas. A new path. And two little pots of herbs that are still sitting, waiting, until I am truly well enough to plant them.


Related posts:
Music Therapy

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.

You could also head on over to the Australia Writers' Centre and vote for the blog in the Best Australia Blogs Competition.

Tuesday 15 April 2014

Pacemaker Update: 9 Months. The whole not dying part is pretty fabulous.

Nine months. Nine Months! That's how long I've had my pacemaker, Jeri. I get regular emails about pacemakers so thought I should do an update on how things are going. More doctors are looking at them as an adjunct to other treatments, or to allow patients to take certain medications. But in the world of Dysautonomia there is no single reason for having one implanted. And for most, they are a scary and last choice option.

(Jeri is a sexy piece of tech.)

I had my pacemaker implanted after a cold Tuesday in May last year where my body threw me a curveball. One minute I was walking to my kitchen feeling not great, but not unusually unwell. Next I was on the floor unable to get up and calling out for help. My eldest son had to pick me up and help me to the couch where I stayed for hours, grey and starting to panic that I may actually die. A 24hr halter-monitor and ECG later and I was booked in for a pacemaker. Bradycardia had hit. Some switch went off in my body and that was it. My cardio and neuro concluded that the autonomic fibres in my heart had finally keeled over. Although this had happened in other parts of my body I really hadn't considered it happening to my heart. The party line is that Dysautonomia affects the nerves but the organs themselves are generally sound. Crazy thing is that my heart is still structurally sound, but those pesky nerves are rather important to making it work properly.

I had never felt so sick in all my life. My family were worried during the waiting period. Time and again my heart dipped, and stayed, down into the 30s and 40s. My limbs were grey and ice cold. My lips blue. Basically I looked, and felt, like death warmed up on a daily basis. It was a tad scary. But here I am sitting and typing and very happy I made the decision.

How did you know you really needed one? 

This is one of the most common questions I am asked. Apart from the objective data of the ECGs and Halter-monitor, I knew something was really wrong. A lot of patients worry that they might miss a heart attack. That they might miss that crucial moment when they really need to go to the ER. When you live with crushing chest pain on a daily basis it can be hard to know. But the pain I felt when my heart started its slow decline is like nothing I had ever felt. The pain in my chest, neck and arm were far more intense than anything I had ever experienced before and were not relieved by any regular methods. It was scary intense. I could hardly walk. Stairs were out of the question. Everything was exhausting, far more exhausting that anything I had ever experienced before. When your heart is hardly pumping, your body isn't happy. Our normal is abnormal. But there are times when that changes and that is when you have to listen and act.

Was it painful?

Short answer is yes. Though nothing you can't deal with. My one tip? Make sure you get adequate pain meds organised before your surgeon goes home or you are discharged. Ice and a panadol will not cut it. There will be a period where you aren't allowed to move your arm as the pacemaker and wires settle. Once over you have to start moving. You will not want to move your arm. It hurts like hell, but no movement equals frozen shoulder and you don't want that. I did find I had a lot of inflammation from the surgery so a few Nurofen were very helpful. I still have pain as my dodgy collagen mean that the pocket that holds the pacemaker in place regularly has little tears and it does rub across my rib which hurts. But it is still outweighed by the benefits.

Can you feel it?

I can feel the pacemaker and part of the wires that thread down to my heart. Mine was placed under the muscle in my chest as I have little to no fat. Still it sticks out and I can easily trace its shape with my fingers. Most of the time I don't notice that it is working, it becomes white noise, but there are times where I feel a jolt as it kicks in. Which is both reassuring and disconcerting at once.

Was it worth it?

Absolutely. Yes you have to commit to surgery every 10 years for the rest of your life to replace the pacemaker (not your wires, they stay in situ except for exceptional circumstances). But the fear that I could suddenly die is gone. Not only for me, but for my family. My blood pressure is not over-reacting to constant drops in my heart rate like it was. Now I sit at a fun 70bpm. It even bumps my heart rate up to 100 so I can get around thanks to an inbuilt actimeter. My most recent check showed that I am relying on it the majority of the time. It also showed that overall I can do a little more compare to what I was doing beforehand. And did I mention the not dying part? That's pretty important.

(My lovely cardio going through my latest readings. As you can see it is simple to check. Just whip a computer mouse on your chest and watch the monitor.)

A pacemaker will not be a solution for every patient. They tend to be a last resort for patients who have run out of options. And they will not fix any other dysautonomia symptoms. If you have atrial fibrillation, permanent bradycardia, or pauses, they can be a godsend. Their use for tachycardia is less well established, though if you have a reactive bradycardia to tachycardia meds they can be implanted so that a patient can have the meds that act on their tachycardia. There are also a new generation of pacemakers that work on blood pressure which I must say interest me greatly. They are also getting smaller every year.

I wouldn't go back and I have no regrets. It was scary at the time but it is also the best thing I have had done since I first fell ill.

(I am grateful that my cardio read my email, took me seriously, ordered the tests, and got me in quickly. Not even 2mths from go to whoa.)

Next month I have my first post-pacemaker, brain and spine MRI. Now that freaks me out. Not so much about the possibility of it all going horribly wrong and my pacemaker exploding out of my chest, or one of the many other disaster scenarios created in my mind. But being stuck in the Thumping Tube of Death yet again. Now that gives me pee-my-pants level of fear.

Michelle :)

Related posts:
Bradycardia: when your heart goes, meh.
So there's this thing called a pacemaker, and apparently I need one.
Pacemakers, capes and becoming the bionic woman, or Seven of Nine, if you talk to Mr Grumpy.

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.

Tuesday 8 April 2014

When the walls come tumbling down.

When the walls come tumbling down
Will you be smothered under the deluge of brick and mortar
Will you be crushed by the weight
Will you give control to sharp edges and pressing pain
Will you lie unresisting
The breath leave your lungs
And the strength your limbs
Will you plead for release
For the rubble to hear you
To beg for it to move.


Will you recognise the strength that flows within
Will you see that it is not a thing of flesh and bone
Will you see that your body is not you
Will you see that worth and strength are found in all
That the form of strength is not what you expect
That you can fight and resist
Even when the flesh you wear fails.

Will you find the crack
The shaft of light through the rubble overhead
Will you claw your way toward that light
Toward life.

Life different
Life changed
Life that will never be the same
Life that leads us in different paths
Life unlike any other
But life all the same.

Strength is there
It may hide
It may shy away
It may seem lost forever
But the search is worth the effort

It may start small
A rock, rough and dull
But it can be polished
Edges smoothed
Wash it clean
And as the dirt falls away
As the first hints appear
It draws you in with it's promise
And the rubble is seen for what it is

An illusion
A lie
For strength was always there
It only needs to be found.


Monday 7 April 2014

When, in a fit of pique, you decide to change your blog's template and then realise you have no idea what you are doing.

Note to all: do not decide to change you blog's template three days after you've had a long trip to the city for neurophysiological testing and returned home not only with your usual crash from that fun event, but also sporting a fabulous sore throat that feels like someone shoved several bowling balls in there whilst you slept.

Why oh why do I do these things?

Admittedly I've wanted to jazz up the blog's design for quite some time. But this was probably not the time to attempt such an undertaking. You see I have the technical ability of a rock. I know the basics so I can create a post and publish it. Nine times out of ten that goes okay. But that is about the limit of my abilities. Now I must wait for Mr Grumpy to come home and hopefully rescue my poor half-done redesign.

In the mean time apologies for the state of the blog.

The Luddite aka Michelle