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,

IT SUCKS

Michelle

"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."

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?

Michelle

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.

5 minute purge.

(source)

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. 

Michelle

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.

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.

Michelle

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....

....it is where you set your gaze that matters. 

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.

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

 

Stupid

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.

Michelle.

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.

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.

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.

Or

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
Within
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.

Michelle

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.

(source)

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