6 days from death.
That’s the quality of life for a person with Meniere’s disease during an active vertigo attack. It’s been compared to someone who is 6 days from death by authors of this study – Meniere’s Quality of Life.
The study revealed the following:
— QWB scores: Meniere’s patients achieved a mean score of .505 on days of acute episodes and .620 on days without acute episodes. This compares with scores of normal adults (.810), very ill adults with life-threatening illness (cancer, AIDS (.616), non-institutionalized Alzheimer’s patients (.506), and AIDS & cancer patients, six days before death (.427)
https://www.newswise.com/articles/menieres-disease-quality-of-life?fbclid=IwAR1famOiDWiOqelzP99ONe8FuquAWbhaXNyyumhD3b40u8Qbg1TAZGCi8Zw
Earlier in my Meniere’s journey, I had read online that a doctor claimed it was 3 days from death …
My husband flinched when I quoted him those words. 40 + violent vertigo attacks year, each one lasting around 4 hours. Unable to move. Staring at one spot on the wall for the entire time. He was the spectator to my sad life with Meniere’s that pulled me into the darkest pit.
Nausea. Puking. Unbearable. Feeling like I am close to death. And doing that 40 + times a year.
6 days from death. Let that sink in.
Do you ever read something that hits you in the gut? Something so well written it describes your invisible symptoms so that others might understand it better.
Dear MONSTER, written by Colin (The Monster Meniere’s) does that. It’s from a book about to be released on June 1st 2023 Dear Meniere’s – letters and art – a collection.
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
This is Meniere’s disease. Vertigo. Hearing loss. Tinnitus. Brain fog. Debilitating. Life changing.
Meniere’s disease is said to be about the same prevalence as Multiple Sclerosis in the community, and yet, there is no funding for research, nor fundraising days in the community to bring awareness. Our medications (if they work) are costly and are not subsidised. Many people with Meniere’s cannot work due to unpredictable, long, violent vertigo episodes that leave them exhausted, causing them to lose their livelihoods, their confidence, their sense of self-worth.
6 days from death. Let that sink in.
It has been said that Meniere’s disease is the most livable disease with the highest suicide rate. If you’ve ever been in Meniere’s FB groups, you will read posts about people wanting to end their suffering. You will see others reaching out to them to help. Just one more day ….
I’ve had MD for 28 years now. How can I sit back and hope for the best for my MD family without doing anything?
It’s like wondering why nothing good ever happens to me.
It’s like waiting for others to act, and then nobody does, because they are all waiting for others to step up for them.
Here’s the thing. You have to go out and grab opportunities.
You have to make things happen.
It’s active. Not passive.
SO here’s my active for my Meniere’s brothers and sisters, uncles and aunts, kids, friends, and that person down the street.
It’s time to give hope. It’s time to support our Meniere’s researchers to help us. Thanks to Anne Elias (Sydney Meniere’s Support Group https://www.instagram.com/menieres_support_au/), Heather Davies (Meniere’s Muse https://www.instagram.com/menieresmuse/) and Steven Schwier (On the Vertigo https://www.instagram.com/onthevertigo/)for helping with the campaign.
A global fundraiser – #menieresresearchgivingday MAY 8
It’s an I see you. I hear you. Let’s help.
Can you spare a dollar or two?
Give together. Give hope. Help a mate.
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)
https://www.instagram.com/myshadow_menieres/
https://www.instagram.com/julieann_wallace_author/
Julieann is mindful of those who also have incurable diseases or are walking on the path of a diagnosis that is life changing. She 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.
Be kind. Always.
My Shadow - Meniere's 