 Disclaimer
Meniere's Australia encourages contact between people who have Meniere's. Knowing how others have experience and coped with Meniere's can help you feel less alone. However please note that the advice, opinions and information given in, or implied by these personal stories remain those of the stories' authors and are not in any way endorsed by MA.
 The Honest Truth
I have never really been a sickie before and lived a pretty high life. I worked full time as a store manager in the Melbourne CBD, played sport regularly, enjoyed a great social life and really lived my life to the fullest.
‘I started to get these dizzy spells that gradually got worse and worse…’
Then all of a sudden I felt really different. I started to get these dizzy spells that gradually got worse and worse leading to vomiting and towards the end, even making me fall over. I thought it was strange and being a normal 27 year old, I just assumed I was run down. I was working close to 70 hours a week with my job and thought well it might be time to have a holiday.
I took a month off hoping that things might get better, but instead they became worse! I started getting a little worried and eventually with my girlfriend and family’s push I went to see a doctor. I must explain I hate going to the doctor. I’m not sure why, but as a ‘normal’ man I must have thought it was a show of weakness.
After seeing the doctor, I had more of a reason for why I felt this way. He had no idea what it was and said he needed to do more tests to help him find out more. So in the next few days I went for every test you can think of. I was jabbed, poked, prodded and x-rayed nearly everywhere and of course, as we all know, this cost me a packet!
‘After testing the specialist sat me down and told me I had a Meniere's disease.’
After getting the test results he referred me to a specialist for an extra test on my ears. This was strange because I had never had an ear problem before even when I was younger. After testing the specialist sat me down and told me I had a Meniere's disease. Surprisingly enough I knew a bit about the illness. My grandfather was diagnosed with it about 10 years ago and I saw the change he had to go through.
I was a bit surprised though because I was young - well 27 years old. I can remember saying, “Wasn’t this meant to be an old people’s disease?” (Sorry oldies) The specialist explained that yes more old people get it than young, and it was a surprise that a person my age had. After talking to him about it for half an hour and collecting heaps of information I was off to see what it could do to me.
‘…only a few people…knew about it…some say this is a bad thing’
I changed my diet, cut back on my work, reduced my stress and it seemed to work for a while. I even got a new job later on with the Herald-Sun distributing their afternoon paper - the ‘mx’. At that stage I wasn’t on any medication because the specialist thought it might harm my chances of it working later on in life. I kept my disease pretty close to my chest. There were only a few people that knew about it. I never told anyone at my workplace about it either. Some say this is a bad thing but I hate the thought of people looking over my shoulder all the time.
I loved my work with the mx. It was only 5 hours a day and I got to know a lot of people through my role at Spencer Street Station. It was fast going work and yes, I did have attacks there too but I figured ways to get around them.
‘I began to push the attacks away. Well try to anyway!’
After watching ‘A Beautiful Mind’ with Russell Crowe - a film about a guy with a crippling disease, I thought maybe I could try the things the character did in the film, even though I didn’t have the same illness. I began to push the attacks away. Well try to anyway! When I got the vertigo attack I would stand a different way, take deep breaths to relax me or try looking at a spot straight in front of me and concentrate on it. Looking back - I don’t think it helped much but it got me through the shift till I could get home and go to bed.
Eventually it got worse and there were times I couldn’t go to work. Then it hit me even harder. I was getting the attacks nearly every day and they were ten times worse than before. I couldn’t even get out of bed. I ended up having to stand down from the job I did and still to this day nobody at the workplace knows that I had Meniere's disease.
In the last 6 to 8 months my life changed. I haven’t been able to work, play sport and even socialize, as I once knew how to. And I tell you what - you find out who your real friends are too.
‘Employers look at you funny…Centrelink has been just as bad as an employer.’
I still look for work but really know now that part time or casual roles are only the go now. But most of all you have to have a really understanding employer - hard to find these days. Now I tell the employer about my Meniere's. It took me a hell of a lot to do that, but with the way I am I know I have to. I’m also now on the medication. Because there is not a lot of knowledge about the disease, it’s very hard.
Employers look at you funny and it isn’t a surprise to find a letter in your mailbox the next day saying you were unsuccessful for the position. This upsets me the most because in some positions I know I'm the most experienced person for the job. But I do look at the employer’s position too and understand even though I’m a bit bitter inside about it. I have found Centrelink (ed: Australian Federal Government employment agency) has been just as bad as an employer. I think people only hear the word disease and they think the worst.
I’m now 30 and have a real battle on my hands. The Meniere's has taken control of me. Well, that’s how I feel anyway. Some people mightn’t understand that but people with the disease will.
I have no job and can’t get any benefits so it’s put a strain on my home life with my fiancé having to look after a lot of the bills and house payments. I can’t afford to go to the specialist now so I just try and get through with the medication and the diet control. This brings on stress for me because even though I can see what it’s done to me I still can’t believe it’s happened.
‘I was always a person who looked to the future; now I’m a person that takes life day by day.’
Depression is another thing that has crept in and to be honest with you suicide has been a thought more than once or twice. Even as I say that this is not a sob story even if it sounds like one. It’s an honest story of what happens. Everyday is a challenge and on good days you really enjoy yourself because you don’t know what’s in store for the next day ahead. I was always a person who looked to the future; now I’m a person that takes life day by day.
I sometimes joke about my disease, which helps gets me through. If you stop laughing you stop everything I think. I always say to my mates that know about the Meniere's that it’s great to feel drunk without spending a cent! I even joke with the doctors that I think if I had three stubbies of beer in the morning it would straighten me up a bit. One doctor actually said try - it can’t hurt!
For most people reading this it will be a surprise and now you know why I have changed a fair bit. I’m sorry if you’re upset that I haven’t told you but I had to deal with it myself first.
Sometimes I still haven’t.
Even though I hate how my life has changed I still see the good things and enjoy the good times. I still have goals in life to fulfil. I have two great things to do this year, one to see my footy team the Saints win the 2005 premiership and the other - the most important thing - to be able to marry my fiancé in August.
I’m just hoping I don’t get ‘the dizzies’ as she walks down the aisle.
Scott O'Grady
Ed note: Many MA members with Meniere's have found that their day to day life has been vastly improved by following the management strategies advised by their doctor and/or MA.
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