Ménière’s Woman – when life gives you lemons

They say when life gives you lemons, make lemonade.

“They” obviously don’t have Ménière’s disease, or any other incurable, debilitating, life changing disease for that matter. If they did, they would say, ‘I’m sorry about your diagnosis. I hope a cure comes soon. Let me know if you ever need help with anything.’

I want to say that I am sorry that you have Ménière’s disease.

I wouldn’t wish it on my worst enemy. I have had it since I was twenty-nine.

I woke at 5am one morning in early January, 2024, with the words Ménière’s Man stuck in my head. It’s a book written about Ménière’s disease, by a man. I’ve never read it. But I know that people are thankful for the information inside it.

Then I thought, where are the Ménière’s books written by women? There aren’t many.

How about WOMénière’s? WOménière’s? woMénière’s?

Sure, you may be able to glean lots of interesting information from books written by men, but let’s face it, they don’t deal with holding the responsibility of keeping the household going like women do (mostly) – groceries, cooking, cleaning, childcare (if you do have a partner who helps you with that, you are truly blessed!).

Men don’t deal with menstruation and everything that entails.

Men don’t have babies.

Men don’t go through perimenopause and menopause.

Men don’t have the fluctuations with hormones like women do.

We women have the rough end of the stick when it comes to Ménière’s !

Researchers have uncovered countless ways in which women’s and men’s bodies react differently to the same diseases, due to our hormones. There is A LOT that female bodies go through during a hormonal cycle, a stark contrast to the experience of the male body.

And so it began.

I accepted my own challenge to write a book about Ménière’s disease for women, and started on it. I figured that I was more than qualified enough to write it, Ménière’s being with me for 29 years at the time of writing this book. Exactly half of my lifetime.  

Mum of three. My Ménière’s started the year before my first was born.

Wife.

Teacher.

Ménière’s Research subject at the University of Queensland’s  Mind and Brain Institute.

Gentamicin to destroy the vertigo after 9 years of trying prescription medicines, herbal medicines and other alternative treatments.

Cochlear Implant to restore hearing.

Ménière’s Research Australia Ambassador who sits in on Teams meeting with Ménière’s researchers in Australia.

It was my honour to pen this book to help others. To describe the road travelled before others going through the same things.

To encourage.

To understand.

To give insight.

To give tips on surviving the Meniere’s jungle.

To say it’s okay. We’re in this together. You’re going to make it through.

To give hope.

I have put countless hours of medical research into Meniere’s Woman, and reading  anecdotal stories by women and questions they ask on social media.

Plus my own experience.

It’s time to honor us. Women with Ménière’s .

On the pages you’ll find tips, hints, research, personal anecdotes, secret women’s business, pregnancy, motherhood, grand-motherhood, understanding, inspiration and mindset, self-care, a period and Meniere’s symptoms tracker and a Ménière’s Management Plan, plus lots more.

And because this is your book, add your own stamp and style. I have left blank pages for your to glue/tape in clippings, inspirational verses or images that speak to you in some way, or write them in. Be creative. Be you.

Here’s a peek at inside the book. Ménière’s Woman. Honoring you. xx

You can grab a print copy at any online bookstore. But here it is at Amazon if that is easier for you: https://www.amazon.com.au/M%C3%A9ni%C3%A8res-Woman-when-gives-lemons/dp/0645158194/

The eBook is ready for a 1st March release on Amazon: https://www.amazon.com.au/M%C3%A9ni%C3%A8res-Woman-when-gives-lemons-ebook/dp/B0CV74SZDM/

Profits from the eBook and Print book will be donated to Ménière’s research, as all of my Ménière’s books are. I don’t publish Ménière’s books for personal gain, but to help others.

Let me know what you think of the book if you purchase a copy. And, I hope that it helps you beyond what you thought it could. xx

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, to help find a cure or successful treatment for everyone. 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/

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It Will Change Your Life #12

It’s two days before my Cochlear Implant activation and I’m sitting at my desk, writing my new novel. An overwhelming emotion hits. I want to cry. I want to ugly cry. I catch my sob and swallow the lump in my throat and refocus on my writing, listening to cello music with my right ear, trying in vain to hear over the incessant extra loud tinnitus in my deaf left ear – five different noises. It always wins, even at music concerts. I haven’t heard silence for 23 years. Nothing I can listen to masks the sound of tinnitus.

Three years ago, I received a cello as a birthday gift. I wanted to learn to play it so I could hear the music in my memory when all my hearing was gone. I wanted to play it and feel the vibration of the music inside me, so I could burn into my mind how music would make me feel when I could no longer hear. The emotion of music. That is why we all love it so much. It makes us feel. Emotion. It’s what makes us human.

I’ve been playing the piano since I was eight, and can see the written notes inside my head when music is played. I can look at a sheet of music with no sound, and hear the sound of the inky notes on the paper. But it’s the cello I love the most.

You never realise how important something is until it is gone. Anyone who has something wrong with their body can vouch for that. Look after yourself. Not that I did anything wrong to lose my hearing. It is Meniere’s disease that has done that. I hate it with a passion – not just for me, but what it does to people. I know several people with Meniere’s who have taken their lives because of it.

No more. No. More. Enough is enough.  

Sometimes, when I am playing music on my computer whilst writing or working, I stop and put my hands on the two speakers on my desk, and place my foot on the sub-woofer on the floor. I close my eyes and concentrate on the feel of the vibration. The vibration of the high and low sounds and everything in between. The light vibration. The strong vibration. The combination of vibrations.

I would love it. And hate it.

I would love it because I could still hear it with my “good” ear.

I would hate it because I am losing hearing in my “good” ear as well. It would kill me each time, knowing that one day I would never hear music again while walking the Earth. Did I do something to cause this? It tortures my mind if I let it. Then I am reminded that my life is all the more richer because of what I have been through.

It’s the day before activation.

I’m almost going into a panic. Breathe. I feel like a bird that has been trapped inside a cage for too long for it to remember freedom, and when the door is opened for it to fly from its prison, it stays there, because it feels safe.

This is me. A prisoner in my own body. I’ve had Meniere’s disease for 25 years this year. Nearly half of my lifetime. To be honest, there are many days that have been hell. Friends and family never saw that. They only saw the happy me. The one wearing the mask, fooling the world that I was okay. I faked being well. I’m a pro at it. I can’t remember what it’s like to feel “normal”. My life with Meniere’s disease is lived within strict limits as to what I can do. What I can eat. Choosing to isolate myself from social activities because I can’t hear, or I am scared of having a vertigo attack, or the worst one – rejection – because of my hearing loss and I can’t participate, or because I have answered a question wrongly because I couldn’t hear them, and I didn’t want to ask them what they had said for the fifth time.  

To have no vertigo. No tinnitus. And have hearing in my left ear again …  what is that? Is it even possible? What will I become? Will I still be me?

I admit. I am struggling big time. So I keep working on my new novel.

I’m 13,000 words in, and it keeps me from dwelling on the upcoming, perhaps, life changing event tomorrow. In every Cochlear implant group I have joined, the words keep being repeated, “it will change your life”.

But how? Is it that I will be able to hear from my left ear again? And that’s it. What exactly will it change in my life? Will I like it?

Activation Day…

Cochlear Implant activated. My mind blown.

My brain is scattered as I write this blog.

A thousand tears of feelings and thoughts, marvelling at technology – invented in Australia. Eternal thanks to you, Professor Graeme Clark.

I have warned my family – “Danger. I may break into unpredictable sobbing at any time. Good tears. Very good tears.”

I am overwhelmed by feelings of intense happiness. Feelings of release from the Meniere’s prison. A billion memories of my life with Meniere’s and what I have been through. The vertigo. The abhorrent vertigo of hell that takes your hearing. The darkness of depression that wants to take your last breath.

I feel like I have been freed.

Art work by Julieann Wallace

I can’t write anymore today … I am too overwhelmed with emotion, and noise, and information. The world is so unbelievably noisy with a Cochlear Implant.

When the impossible becomes possible. I am so beyond thankful …

Next post … during activation xx

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.

Meniere’s Journal – coming to Amazon soon.
Available for pre-order at https://www.lillypillypublishing.com/product-page/meniere-s-journey-pre-order