Tag: invisible illness

Dear Mama, I see you wiping your wet eyes

.Reading time 10 minutes.

Dear Mama,

I see you.

I see you wiping your wet eyes.

I see your tears dripping onto the pillow.

I see you wince at sounds that you say are too loud.

I see you, lying on your bed, staring at the wall, as still as a statue for a very long time. Why can’t you move?

And when you are as still as a statue, I hear you vomiting loudly. It scares me. When will you get better?

I see you walking and nearly falling over.

I hear you crying in the shower.

I hear daddy crying, too.

It makes me sad.

I want to hold your hand.

Here, Mama. Have my magic wand. It will cure you. And then we can play together like we use to … before you got sick with many ears.

From your favouritest-est daughter,

Lucy-Lou

P.S. I love you Mama, to the furtherest-est sparkliest star and back. P.P.S. Please get better.

Do you ever try to hide your tears from your child?

Your crying?

Your sounds of frustration or anger?

Do you think you have hidden those emotions well enough from your children, because you don’t want them to know how you truly feel?

What if your child caught a glimpse of you at your time of vulnerability?

How would your child react? How would you react?

I have to admit. I cried in the shower. I cried in the middle of the night.

I wiped my tears the moment I heard the footfall of my children as they came near.

And when I was bed-bound due to violent vertigo from my Ménière’s disease, my husband or my parents would take care of my kids, keeping them busy to reduce the impact of my incurable disease upon them.

And sometimes, just sometimes, one of my three kids would quietly stand beside my bed and hold my hand for a moment in time. A moment in time that meant the world to me.

There’s a new book out. An important book. Not just for people who suffer from Ménière’s disease, but for anyone who has or has had vertigo, hearing loss or tinnitus.

The global Meniere’s community has a goal – to stop that vertigo, that tinnitus, that hearing loss, not just for people with Meniere’s, but for all people from all walks of life.

Money raised from book sales will be donated to research.

Imagine not having vertigo anymore.

Imagine not having tinnitus anymore.

Image hearing loss being a thing of the past.

Can you dare to imagine being you again …

Dear Ménière’s has been labelled as extraordinary, a life changer and a much needed book by early readers. It’s available at online bookstores as a print book and eBook

Here’s some links to Amazon:

Hardcover www.amazon.com/Dear-Menieres-Letters-Global-Project/dp/064515816X/

Paperback www.amazon.com/Dear-Menieres-Letters-Art-Project/dp/0645158178/

eBook www.amazon.com/Dear-M%C3%A9ni%C3%A8res-Letters-Art-collection-ebook/dp/B0C4VG8HFY/    

And now to inject some humour for our kids – Captain Vertigo.

Finally, enjoy some letters to Ménière’s …

Dear Ménière’s,

I wish I could stand at the ends of the earth, where the winds blow swiftest, and feel the gentle sway caused by the blowing, not by my lack of balance, and have the winds blow away the tinnitus and the brain fog.

To have, for just one moment again in time, the silence of sound.

The clarity of mind.

To feel energised by life and not drained by it.

I imagine standing on a windswept shore. The noise I hear is the rustle of seagrass, the blowing of the southerly wind, the heave and heft of the ocean. Sea salt and sand pepper my skin. The incessant ring in my ears is quiet, drowned out by the oceans song or swept away, I neither know nor care, I cannot hear it.

The salty air fills my lungs, its brusqueness blows away the ever present fog in my brain. Thoughts, swirling vaguely in my brain, come to the forefront. They take shape, as clear and sharp as the broken shells beneath my feet. I’m not moving through a miasma, I’m as clear as the sun shining through the water that rolls onto the sand and back out again.

Each deep breath clears more fog from my head and returns more of me to myself, as if the real me lives out there in the ocean, waiting to be breathed in on the winds.

I miss who I was.

Kelly

Ménière’s disease since 1998

Without Warning

Here it comes.

Deep breaths. Find your focus.

Radiating tremors. Vision blurred.

For a brief moment, numbness.

Knowing the dark wave is about to consume you.

Deep breaths. Screaming inside,

“NO! Please God, not again. Not here. Not now.”

White knuckles desperately trying to hold steady.

Sweat pours. Heart racing.

Every line bends. Every curve vibrates.

Close your eyes and it will find you.

Even in darkness you twist and turn.

Gut is writhing in distress.

So violent yet completely invisible for others to see.

Empathy is shared with whispers of doubt.

Solace too far to reach.

Independence lost.

Dignity robbed.

A bright future shadowed in fear.

In time, tremors dissipate and vision clears.

Th e agony is rewarded with short lived joy.

Without haste, the crippling fear of the next one looms.

Micaela Grady

Written 9/8/2021

Ménière’s disease since 2007, Vestibular Migraine: 2021

Dear monster,

You are …

AKIN TO SHIT on a shoe trodden through a carpeted home,

A 6 HOUR LONG podcast with a voice so monotone.

Like riding a bike with a constantly falling off chain,

A summer garden party that is RUINED BY THE RAIN.

The spilt glass of water that calculatedly covers one’s crotch,

Like paying for Netflix then discovering there’s barely anything good to watch.

The SOGGY WET SOCK and also the HOLE IN THE BOOT,

Like discovering HALF A WORM after biting into some fruit.

A SALT AND VINEGAR CHIP on a fresh paper cut thumb,

The APPROACHING BEAST IN THOSE NIGHTMARES where we are unable to run.

Truth is, you are SO MUCH WORSE than all these examples by a mile,

This is me keeping it light, and trying my damn hardest to CREATE A SMILE.

Colin (That Monster Ménière’s)

Diagnosed, 2019

Instagram: @that_monster_menieres

A massive thanks to Anne Elias (Sydney Meniere’s Support Group www.instagram.com/menieres_support_au/),

Heather Davies (Meniere’s Muse www.instagram.com/menieresmuse/)

Steven Schwier (On the Vertigo www.instagram.com/onthevertigo/)

for helping with the Dear Meniere’s book.

Julieann Wallace is a multi-published author and artist. When she is not disappearing into her imaginary worlds as Julieann Wallace – children’s author, or as Amelia Grace – fiction novelist, she is working as a secondary teacher. Julieann’s 7th novel with a main character with Meniere’s disease—‘The Colour of Broken’—written under her pen name of Amelia Grace, was #1 on Amazon in its category a number of times, and was longlisted in 2021 and 2022, to be made into a movie or TV series by Screen Queensland, Australia. She donates profits from her books to Meniere’s Research Australia, where they are researching Meniere’s disease to find a cure. Julieann is a self-confessed tea ninja and Cadbury chocoholic, has a passion for music and art, and tries not to scare her cat, Claude Monet, with her terrible cello playing.

Julieann Wallace ~ author (julieannwallaceauthor.com)       

www.instagram.com/myshadow_menieres/

www.instagram.com/julieann_wallace_

Balancing Rocks

.Reading time 7 minutes.

Balance Awareness Week, 2022

I’m sitting on a small rock beach at Wangetti, between Cairns and Port Douglas in Australia.

There’s balancing rocks everywhere. Allowed by the council. The insta-famous Gatz balancing rocks.

There’s a foreboding, for me.

Others would see it differently. I can see how it might be considered fun, and the challenge of creating your own rock stack exciting. There’s a family to my left busy creating rock stacks. Smiles litter their faces. Fingers point. Hands rest on hips once they have accomplished their mission.

But to me, the rocks are all shades of darkness, mirroring my Meniere’s journey and the destruction of my balance cells. My Meniere’s journey that has scarred my heart and mind. And my inner ear. My journey that I pray that nobody ever has to travel. Cure for Meniere’s disease, please come soon.

I study the balancing rocks with more focus.

Rocks of black.

Rocks of brown.

Grey rocks. So many grey rocks with an “e” like the rain clouds – melancholy, but an enjoyable melancholy that builds up until it releases, like petrichor, the smell of the rain after warm, dry weather. Satisfying. The grey with an “e” of deep thought, philosophy and ponderings. The grey with an “e” that helps you to discover parts of yourself that you never knew existed, and can vanish without leaving a bitter aftertaste.

Gray rocks. So many gray rocks with an “a”. Never enjoyable. A very dark gray. It’s self-judgement, doom and gloom, forever hanging around and within. It wants to drag you into the dark abyss of the colour black, that absorbs all colours … the colour of self-condemnation, the colour of depression.

The rocks first caught my gaze as my husband and I travelled to Port Douglas to catch the Quicksilver boat out to the Great Barrier Reef the day before.

‘I want to go back to the rocks tomorrow,’ I had said to him.

Memories of my journey with Meniere’s disease flood my mind and my throat tightens. Vertigo. I so hate vertigo! I could cope with the ear fullness, hearing loss and tinnitus. But not the abhorrent, unpredictable vertigo.

Balance. I chose to have my balance cells destroyed in 2004 to stop the violent, horrendous, soul-destroying vertigo that would last up to 4 hours at a time. I would be hit with episodes of vertigo at least 40 times a year. I was totally debilitated, unable to move. I would stare at one spot of the wall for the entire time trying to gain some sort of control over the vertigo. I never could. My husband would selflessly empty my vomit bucket numerous times, and take me to emergency at the hospital for an injection of Stemetil and a bag of IV fluids. I was exhausted for days afterward.

I looked to my right. And there was my husband creating his own rock stack.

Tears pooled in my eyes. I felt like he was making the balancing rocks for me, for the journey I have been through, relearning my new balance using my eyesight. Successfully.

In reality, I know that he is creating a rock stack because it is fun.

I wipe the tears from my eyes and place the final rock on top of my husband’s rock stack. Joy fills me and I smile.

And there it is. We have created a rock stack for my Meniere’s family, and for others who have vertigo caused by diseases and traumas.

I lift my gaze to the ocean and inhale deeply. What a journey I have been on. What an awesome family I have where I receive support, always, and who deal with my lack of balance with humour to make me laugh.

I am beyond thankful that I no longer have vertigo. An answered prayer.

I walk to my left and move amongst the balancing rocks with care. The ground is uneven and … rocky. Any normal person could easily lose their balance here. But I’d hate to be the reason some rock stacks are knocked over due to me losing my balance.

I laugh to myself at the irony.

I take one final gaze at the works of rock art. Ephemeral art. I know that researchers are working on devices and gene therapies to cure vertigo.

I look down and find a heart shaped rock. Good things are coming.

https://www.julieannwallaceauthor.com/

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https://www.instagram.com/myshadow_menieres/ https://myshadowmenieres.wordpress.com/

Julieann Wallace is a multi-published author and artist. When she is not disappearing into her imaginary worlds as Julieann Wallace – children’s author, or as Amelia Grace – fiction novelist, she is working as a secondary teacher. Julieann’s 7th novel with a main character with Meniere’s disease—‘The Colour of Broken’—written under her pen name of Amelia Grace, was #1 on Amazon in its category a number of times, and was longlisted in 2021 and 2022, to be made into a movie or TV series by Screen Queensland, Australia. She donates profits from her books to Macquarie University, where they are researching Meniere’s disease to find a cure. Julieann is a self-confessed tea ninja and Cadbury chocoholic, has a passion for music and art, and tries not to scare her cat, Claude Monet, with her terrible cello playing.

‘Tis the Season to be … anxious …

.Reading time 10 minutes.

I love Christmas. I love the childlike, contagious joy. I love the happy, and sometimes emotive music. I love the delicious baking aromas dancing through the house. I love the colourful decorations, the shiny baubles a grand temptation for our family cat and mini dachshund.

But, I don’t like the work gatherings. Three in five days this year.

I dislike not being able to strategically choose where to sit where I know I will have a better chance to hear to participate in conversations. I struggle with the unknown event planner sitting me at a table where conversations are bouncing around me, left and right, behind, in front, and back and forth, sometimes words heard, sometimes not.

I loathe the loud noise surrounding me, as I try to tune into the drowned-out conversations, the excess noise competing with the limited hearing in my good ear and it’s hyperacusis, and my cochlear implant in my Meniere’s ear.

I grapple with the embarrassment of asking someone to repeat themselves. Once. Twice. Sometimes three times.

And I deplore feeling like a fake, pretending to be a normal person who is perfectly happy, like everyone else seems to be as they enjoy every moment, while I sit there as a wobbling pool of anxiety that makes me want to flee from the room.

I hate being an observer, looking for who is talking … the unremitting, tiresome watching … watching how other people are reacting to what is being said that I cannot hear properly. Should I fake smile now? Should I pretend to laugh now? Should I look crestfallen now? Should I shake my head from side to side like others now? Should I nod, now?

I despise being the copycat, and the battle of trying to fit in.

I hate … how utterly exhausting it is.

And I resent how it makes me feel. Like I’m not good enough. Like I’m an add on. Like the others are just being polite to me.

I hate what Meniere’s has done to me. I feel like I am living in a world where I don’t belong. A misfit.

I feel like I am a spectator to a life that is full of colour, while my shadow, Meniere’s, drains the colour from my life.

And then I feel disappointed in myself.

I should be thankful that my vertigo was destroyed by gentamicin, also destroying my balance and having to relearn to walk using my eyesight. I should be thankful that I have a cochlear implant. I should be leaping with joy that I can still teach in classrooms of teenagers, guiding them, helping them to grow their wings so they can be whatever they want to be in life.

But, my work friends and colleagues (whom I love and adore) don’t know how exhausting it is trying to fit in with their photobooths, their conversations in a loud background environment, their misbelief that perhaps my life is as normal as theirs, when in fact my struggle is exhausting, riddled with the poison of life destroying anxiety.

They don’t know how, when I go home, I have to pick up the pieces of me that are breaking off to the reality that I feel like I don’t fit in. That I will never be normal. Like them.

They don’t see me as I melt into a pool of self-pity.

How do I ask my generous employer for an exemption from the compulsory celebratory gatherings? How do I explain I don’t want to go to the extravagant, lavish, work celebrations to stop the physical, emotional, and psychological fallout? How do I explain these social gatherings make me want to run from the room, or sink into a corner where I can be invisible? How do I explain that I don’t want to go so I don’t have to suffer my own personal after-celebration post-mortem of overthinking, and tears? How do I explain that I don’t want to go, to stop me waking at 3am, hating being me, and hating my shadow, Meniere’s.

And then I think … the person who others think I am, the version of me they see at work, is entirely my fault. I’m exceptional at covering up my disability and my invisible illness. 26 years of Meniere’s. I’ve had a lot of practice. They can’t see me working hard to keep my balance. They can’t see me working hard to have a conversation with them. They don’t see my cochlear implant, hiding beneath my hair.

And then I remember…

I am a survivor. A fighter. What I have been through with Meniere’s disease is heartbreaking. Devastating. Life changing.  

I suck in a breath and hold back my tears …

But still. I so hate this. I so hate what Meniere’s has done to me, and what is has done, and is doing, to others.

I think back to the advice I generously give to others, reminding myself to use it –

  • Change your mindset from negative to positive.
  • Look for the small triumphs.
  • Celebrate the small wins.

I’ve done it a thousand times before. And I must continue doing it …

Well, I did do it! I survived three social celebrations in five days, as physically exhausting as it was. I’m thankful to be invited. It would be worse to be left out. I connected with another work colleague who is deaf in one ear. I asked her how she was going with all the noise, thinking how blessed I am to have a cochlear implant. I watched as normal hearing people struggled to hear conversations, me sometimes hearing the conversation better than them with my Cochlear Implant! And I had very patient friends and colleagues who did repeat words for me, and understood. And I thank and honour them for their kindness.

If you’re reading this, finding yourself nodding your head with perfect understanding, and even perhaps, tears falling, remember, if you are going to a social event, you can do it! I totally get what you are going through. Look for the helpers. Look for the good things that happen. And … forgive yourself. Forgive others, for they do not understand. Be kind to yourself – intentionally, extravagantly, unconditionally.

Good things are coming … I know it.

Julieann Wallace is a multi-published author and artist. When she is not disappearing into her imaginary worlds as Julieann Wallace – children’s author, or as Amelia Grace – fiction novelist, she is working as a secondary teacher. Julieann’s 7th novel with a main character with Meniere’s disease—‘The Colour of Broken’—written under her pen name of Amelia Grace, was #1 on Amazon in its category a number of times, and was longlisted to be made into a movie or TV series by Screen Queensland, Australia. She donates profits from her books to Macquarie University, where they are researching Meniere’s disease to find a cure. Julieann is a self-confessed tea ninja and Cadbury chocoholic, has a passion for music and art, and tries not to scare her cat, Claude Monet, with her terrible cello playing.

Purchase ‘The Colour of Broken’: print book & ebook or audiobook (narrated by the incredible Heather Davies)

Purchase ‘All the Colours Above’: print book & ebook

Purchase ‘Daily Meniere’s Journal – 3 month’: print book

https://www.facebook.com/julieannwallace.author

https://www.instagram.com/julieann_wallace_/

https://www.instagram.com/myshadow_menieres/

It Will Change Your Life # 5

.Reading time 8 minutes.

November 5th 2019 – the Surgeon.

Life with an invisible illness is an interesting voyage. People cannot see what you are going through, what you suffer- physically, emotionally, psychologically, socially –  your invisible scars – so it’s hard for others to empathize.

People would often say to me, ‘Your life has been so easy. Everything just falls into place. Good things always happen to you. You’re always smiling.’ It used to frustrate me. They had no idea what I was going through. They had no idea I worked hard to be where I was in my career, my family, my three children. Nothing ever “fell into place”. It was earned.

During the hardest time of my Meniere’s disease, I was in very deep and dark depression that I couldn’t climb out of. Yet, I kept smiling. It was easier that way. I would patch up the cracks in my mask before I put it on and met with others. If I could meet others … if my shadow, Meniere’s, hadn’t imprisoned me for five hours of violent, debilitating spinning that would land me in hospital at times.

In hindsight, I’m glad my illness is invisible. It makes it easier to pretend that I am okay. I don’t have people avoiding me like I have a contagious condition. I don’t have people looking at me with well-meaning concern, or that “pity” look. I hate the pity look. I don’t have people devaluing the severity of my symptoms, like:

‘It’s okay, dear, we all get dizzy sometimes.’

‘Oh, I have tinnitus too. It’s so common. When it’s really quiet, I can hear a little “sssssssssss”. You’ll be fine!’

‘My friend had Meniere’s disease – he got a bit faint sometimes. He went to the doctor and is cured.’

Meniere’s disease. No cause. No cure. Yet.

Good things are coming. I know it. I follow the research.

My Cochlear Surgeon is younger than me, as my ENT had said.

I follow the surgeon into his office, my shadow, Meniere’s, behind me, then my husband, and anxiety far behind. The more I know about the Cochlear Implant the less anxious I feel. And I am so thankful to hundreds of people with Cochlear Implants who have reached out to me. The world is a wonderful place.

The surgeon tells me that my ENT believes my Meniere’s disease has “burnt out”.

“Burnt out”. There’s those two words that float around in Meniere’s groups.

According to menieres-disease.co.uk, “the term ‘burn out’ is frequently used to describe Meniere’s as though it is the end of the line, that it has finished. However, it really means that the vertigo attacks have disappeared as the vestibular function has now been destroyed. The disease continues to progress as hearing is completely lost, tinnitus and fullness will continue even after burn out.”

‘Hmmm … I’m not so sure that it has burned out. I still get little mini spins at times,’ I say. And it’s definitely not BPPV.

I am questioned about the history of my Meniere’s, then the surgeon asks me to sit on a stool so he can look inside my ears.     

‘Spin to your left,’ he says.

‘Spin?’ I say with a smirk, referring to the spinning of vertigo, then swivel the chair to the left, slowly.

‘Turn to your left,’ he says, smiling. Ah – he has a sense of humour. Good. He uses the auriscope to look inside my ear canal.

‘Turn … to your right,’ he says with a smile in his voice. I swivel the chair to the right, slowly, and he checks inside my ear canal.

The remainder of the appointment flows with quick succession:

Surgery date: 19 December. Overnight stay. $25, 000 Cochlear Implant cost covered by the health fund. Any questions?

I take a deep breath. ‘Will my vertigo return?’

He considers my question, then says, ‘I don’t expect it to, but there are no guarantees. For Meniere’s patients who still have some balance cells left, I usually wash out the inner ear with gentamicin while I am in there as an insurance that they will not have vertigo anymore, but since you have been so good for quite a while without vertigo, I won’t do that, in case it upsets anything.’

I nod, feeling a little numb. There is still no certainty that my vertigo will not return. How can it be burnt out if the vertigo returns? My shadow, Meniere’s, crosses its arms and grins.

Before I leave, the surgeon gives me a form for an MRI and CT Scan, and tells me I need balance rehabilitation before I have surgery, and to continue afterward. I raise my eyebrows and nod. I have never had balance rehabilitation; I just relearned my balance to walk by myself after the gentamicin was injected into my middle ear in 2004.  

I leave the surgeon’s office. Anxiety is waiting.

Next – MRI and CT SCAN

About this blog …

My Shadow, Meniere’s, is not just about the physical aspect of a Cochlear Implant – you can research about them online. I am sharing the human side of the journey towards a Cochlear Implant – feelings, appointments, the process, apprehensions, successes, highs and lows as I step into the next chapter of my Meniere’s journey.

I am mindful of those who also have incurable diseases or are walking the path of a diagnosis that is life changing. My blog never aims to undermine the severity of anyone else’s illness, disability or journey. We all deal with life with different tolerances, attitudes and thresholds.  ‘My Shadow -Meniere’s’ is my journey. It is my hope that it can help others with Meniere’s disease, or hearing loss, or simply when life has a plot twist.

I also acknowledge those before me, who have already had a Cochlear Implant. Your experiences, advice and suggestions are welcome.