I know - my thoughts on men might make for a more titillating post. Even an exposition on the feminist movement and its impact on men over the past five decades might be good, but in that I have no qualifications that would recommend my opinions (although I might have a stab at it one day anyway just for fun). At least with Ménière's Disease I have what I believe to be experience, even though I have no medical degree. But I have it on good authority, from someone who is qualified, that I have been experiencing Ménière’s since July 2010.
Ménière’s is named after a man. No surprises there. I don't mean that in a bitter and sarcastic way, because men have dominated world politics, medicine, industry, commerce, scientific endeavour, the arts, philosophy and TV sports coverage for aeons, while even though women's contributions in every area have also been enormous, women have been maligned, sidelined, passed over and burnt as witches. I digress (and wave goodbye to my male readers). I mean it in an "I'm stating the obvious" way because clearly the disease is not named after a body part and lots of syndromes and maladies are named after the person who first put the symptoms together in a way that is useful for explaining and treating them. Also because the word "Ménière" looks likely to be a proper noun, possibly French because of the decorative flourishes (yes, I know they are an acute and a grave, thank you grammar gendarmerie). Indeed, I can confirm our man is a Frenchman. If I had named this post "All about French men" I don't doubt it would have gained more hits on the internet. Again I digress. And wave goodbye to my female readers who wanted to read all about French men.
The optimistically named Prosper Ménière was a physician who, after being denied professorship due to "political tensions" (honestly, who hasn't used that old chestnut when overlooked for promotion), attempting to eradicate cholera and then working with deaf-mutes, decided to focus his attention on diseases of the inner ear. Doesn't matter how you get there I guess. He published a paper in 1861 called 'On a particular kind of hearing loss resulting from lesions of the inner ear', or whatever all that is in French. Je ne sais pas.
What I do know is that even though Live-Long-and-Prosper defined the disease it is very difficult to diagnose. I had my first symptoms in July of last year, but was not diagnosed until October. It started when I was at school, in the library with my grade. I like to read picture story books to my 11 and 12 year old students, as some great inferences and understandings can arise from shared viewing of great illustrations. I held the book upright on my lap, and bent my head over to read it (upside down, teachers can do that. Oh ok, everyone else can too, it's not that hard). I felt like the room swooped around me, and I grasped the chair because I thought I was going to fall off it. My stomach had lurched with the initial sensation, and I felt like I was going to vomit. Not a good prospect in front of a grade of kids. Lifting my head stabilised things for awhile, and I shifted the book to be able to get through it. Needless to say, the discussion was shorter than brief and the depths of the text were left unplumbed. I was assisted to the first aid room where the vomiting began.
The sensations I had experienced - vertigo, nausea and vomiting - are the most easily recognised of the signs associated with Ménière’s. There are other symptoms I experienced in the ensuing months: loss of hearing, tinnitus (ringing in the ears, deafening at times), earaches (or a feeling of fullness in the ears), headaches, and loss of balance. People with Ménière’s can experience some or all of these, and the disease can advance in stages, be present intermittently or last for prolonged periods of time. I would be considered Stage Two out of a possible three stages - in a prolonged episode but with only one ear affected and therefore with great hope that it will resolve, although hearing damage in my ear is likely to be permanent, and my other inner ear will have to learn to compensate for my sense of balance.
At the first onset of symptoms last July, I was diagnosed with an inner ear infection. I had four days off work then returned to school. I worked a full day, then the following day I was hit by even greater nausea than before, and was sent home. I have not returned to work since then. I was referred to a disappointing man: an Ear, Nose and Throat (ENT) charlatan, sorry, specialist, and was scheduled for a battery of hearing and inner ear tests for which I was far too unwell at the time. There was no relief for my symptoms and the inner ear infection diagnosis was set aside pending balance tests in August. I was essentially sent to bed with no clue as to how to help myself, suffering intense nausea and dizziness at every movement of my head.
Prosper? I did not. By late August the nausea, dizziness and earaches were unbearable, and I was admitted to hospital due to vomiting and dehydration. A CT scan was performed, and steroids were prescribed for a condition vaguely called vestibulitis and labyrinthitis at different stages. Referral to a physiotherapist for balance rehabilitation was recommended for some point in time when my stomach could tolerate it. In the meantime I lost around 9 kilograms, despite the steroids.
What this succession of months looked like in real terms: me, in bed, every day, trying not to move my head or vomit. My husband setting me up with some kind of breakfast before he left for work. Mobile phone and house phone on the bedside table. Mum, dad, mother- and father-in-law, two sisters, brother or aunt taking turns to drop by every day to try feeding me something for lunch, and give me some stimulation or conversation. The same people, and some good friends, cooking meals for the freezer so my husband had one less thing to do. Mum working her way through a WWII-era recipe book 'for convalescents' to try and tempt me (N.B. the beef tea was not a success). Mum, dad, in-laws and husband driving me with a bucket on my lap to balance tests, doctor's and physio appointments and an MRI scan, and picking up medical certificates and prescriptions on my behalf. Mum doing shopping, pantry organisation and some general housekeeping. Husband working, cooking, cleaning, walking the dog, doing the washing, doing the shopping, paying the bills and being bewildered. Ah, marriage. Poor schmuck. What a deal he got. (And what an excellent man.)
What this succession of months meant, in real terms: I completely lost my independence. My ability to work. My ability to drive. My ability to walk. My ability to BALANCE! Honestly, you don't know what you've got 'til it's gone.
Do these simple tests, even if mentally:
Walk down a corridor. Do the walls feel like they're coming in on top of you? Do you move away from one of the falling walls and hit the other wall all of a sudden?
Walk past a descending staircase. Do you have to concentrate and lean away from it in order to avoid falling down it, even though you're just walking past?
Stand still. Then suddenly move your head. Do you tilt and wobble as though someone just pushed you?
Walk in a straight line, and then move around a stationary object. Do you suddenly tip over navigating around the object? Do you then stagger to correct yourself and fall over the object anyway? Funny, I know. I laugh too. But if you answered 'mais non!' to all those questions, you can feel proud of your excellent balancing skills, and your ability to respond excitedly in the negative in French.
I have felt like the breeze can knock me off balance. I have swayed when I thought I was standing still. I have changed direction and felt the whole earth turn on its axis, even though nothing has moved. You do not want me behind the wheel of a car when this stuff is going on.
I have also experienced the emotional impact of Ménière’s. Being unbalanced doesn’t stop at the vestibular system in your ear – when an illness like this hits you, disorientation starts with the physical and ends with the mental and emotional. I have felt helpless, weak, insecure, dependent, pathetic and hopeless. At times this led to depression and malaise. I felt like dropping my bundle – what was the point of even trying to get out of bed? I felt like I had to give up parts of myself just to get through. To accept help. To accept that I couldn’t work, couldn’t drive, and couldn’t look after myself. It was an effort.
My eventual diagnosis of Ménière’s came from a second but unrelated hospitalisation in October. It came through an excellent man, my gastroenterologist, who had seen me in July (again unrelated) and was surprised at my lack of improvement over that time. He referred me for a second opinion, to a man not denied his professorship (outdoing old Prosper there), an Associate Professor of Otology and Neurotology (just a fancy name for an ENT, in fact I'm surprised it's not in French). Because of these men, I began to have some way of handling the illness. The Ménière’s diagnosis gave me more information - firstly it is idiopathic (of no known cause) and cannot be cured, so treatment is for the management of symptoms. Secondly, and this is significant, it can be brought on by stress. I think miscarrying after four years of trying to get pregnant and being severely anaemic and having active ulcerative colitis probably fit the bill here. Also, I learnt that a low salt diet helps to treat the disease, as Ménière’s is exacerbated by excess fluid levels in the inner ear (endolymphatic hydrops if you want to Google it) and salt causes you to retain fluid. While pregnant, I was having salt on my salt, I craved it so much. Oops. My qualified Associate Professor also told me that in order for my Ménière’s to get better I had to prioritise gastric health. All bodily health comes from what you eat, and IF you eat, and you can't hope to get well without a focus on eating well. Of course, everything is complicated by the fact that I have had two tumours surgically removed, with all that entails, and I am being treated chemically for cancer. Nothing is simple when you have a few things going on at once - this is why I'm still suffering from Ménière’s after all these months. I haven't had the periods of remission that a lot of people have, and probably won't until chemo is finished. Patience is required: it has to be cultivated. Like a Frenchman. Ooh là là.
At present, I am no longer bedridden, although chemo provided a Ménière’s setback several weeks ago. But for all that, I am in what I am beginning to call a standard phase, as I've been here before – prior to liver surgery, and prior to chemo: I am eating well, so my muscles are getting strong enough to compensate for my vestibular system in the inner ear. I am beginning to walk (with my walking stick) with greater strength thanks to a daily walk up the hill I live on, and I am functioning with a moderate level of balance. The deficit is only seen when I haven’t been eating, when I turn my head while walking, I change direction, or get up too quickly. I am almost ready to consider driving short distances again, as long as I can maintain my current level of ability. My capacity to work is in part measured (by me) by whether I can drive, so this is an important goal.
C'est la vie, or at least, c'est le Ménière’s (I just made up the gender for the article 'le' because Prosper was a bloke, apologies to any French-speaking purists). I hope you know more than you did before (about Ménière’s, not inventing French parts of speech) and can see where it fits into the current overall dysfunctional picture of my health. And do spare a thought for those of us on a low salt diet. God I miss bacon. And Cheezels. Merde.
Notes:
I am not a medical practitioner, my descriptions are from my experiences or information provided by Ménière’s Australia.
I have neither researched men for fifty years nor studied enough feminist literature to attempt an exposition on the feminist movement and its impact on men over the past five decades, so you are safe.
I do not speak French.
This is not an advertisement for Cheezels.
Touché!
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