 Disclaimer
The Ménière’s Support Group of Victoria encourages contact between people who have Ménière’s. Knowing how others have experience and coped with Ménière’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 MSGV.
 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
Ménière’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 Ménière’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 Ménière’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 Ménière’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 Ménière’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 Ménière’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 MSGV members with Ménière’s have found that their day to day life has been vastly improved by following the management strategies advised by their doctor and/or MSGV.
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