BALANCING MY LIFE WITH MENIERE’S DISEASE by Julie Legget, Outreach Worker
I have lived with a debilitating ear condition called Meniere’s Disease for over 30 years. Living with a vestibular disorder of the ears has not been easy, a journey that has shaped my life in many ways, lots of ups and downs in the process, presenting unimaginable challenges at times.
1987 was a year that marked the onset of this. It came out of the blue one day when I suddenly fell to the ground with the whole world spinning, feeling nauseous and un-coordinated. Such was its severity that I found myself incapacitated and having to lie very still until things subsided.
Following a GP examination shortly afterwards, I was referred to an ENT Clinic at Southend Hospital. This led to various tests being undertaken and after some time and waiting, a diagnosis was reached and I was told that I had Meniere’s Disease bi-laterally in both ears. Little did I know at the time how much this would impact upon my life.
The consultant suggested that the loss of hearing I was experiencing could be corrected with the use of hearing aids and I well remember a large NHS hearing aid being dispensed for my left ear, which at the time seemed unreal. I remember thinking deafness can’t happen to young people like me, but I came away with the aid nonetheless, feeling somewhat unsettled, having been told there was no cure and that nothing much more could be done.
A little knowledge is a dangerous thing and so I set about trying to find out more about what happened to me in the hope that I could try and work out what best to do. Of course I had received the consultant’s prognosis that Meniere’s Disease would present certain symptoms, vertigo, hearing loss and tinnitus. It all made sense, as I had been experiencing ringing in the ears or intrusive buzzing for some considerable time. A turning point, was when I discovered an organisation called the Meniere’s Society. For anyone reading this, if you wish to find out more about Meniere’s Disease or perhaps if you have Meniere’s Disease and do not know that much about it, this small charity is invaluable. www.meniere’s.org.uk
Back in the 1980’s we did not have at our fingertips the internet or such advanced technology to help us. The phone call I had made all those years ago was uplifting. The relief that came, knowing that someone on the end of the line understood, that I was not alone and that help could be afforded was immense.
Anyone living with Meniere’s Disease will tell you that it is often unpredictable in its nature, a fluctuating condition that can be difficult to cope with on a daily basis. Out of the three key symptoms, the gradual deterioration of my hearing over the years in both ears has been the hardest to contend with, corrected only by the use of hearing aids, which I have come to totally rely on in terms of day-to-day communication. At a particularly low ebb in my late twenties, hearing therapy played an important part in my life and with the help of an excellent hearing therapist at Southend Hospital, I was referred to what was then known as rehabilitation, arranged via the excellent national charity Hearing Link, www.hearinglink.org
This presented another huge turning point for me. During an entire week’s intensive programme devoted to hearing difficulties, kind, knowledgeable people, guided you through an emotional journey of coming to terms with what was happening in your life. It was a lot to take in, but most of all there were others in similar situations, people in the same boat, who were losing their own hearing brought about by all sorts of reasons. New lifelong friendships were forged because of it. To this day, I have a lot to thank my therapist for; it was an empowering thing to participate in such a positive environment during that week, especially amongst others who truly understood people’s personal and distressing positions. I left with a feeling, that I could, with strength of mind, get to grips with it all and that hearing loss would not define my life and take over.
I have lived with Meniere’s Disease for many years now and I am not alone. In the UK it is estimated that around 1 in 1,000 people have it, most commonly affecting people aged 20-60 and its thought to be slightly more common in women than in men. There is no cure for Meniere’s Disease but you can learn how to manage it rather than it, manage you.
That is what I set out to do all those years ago. It has not been without its difficulties and hurdles to climb. By nature, I am an optimistic person, refusing to give up my career at the time in the travel and events industry because of it. So I battled on and with the help of loving family and great friends found a way to continue doing what I did best, with the help of hearing aids, and professional guidance from hearing experts, managing my ear problem the best way possible.
Our lives of course naturally evolve and with that I can look back, and indeed still forwards with optimism, realising that, out of every bad comes some good. Because of Meniere’s Disease, I have been fortunate over the years to forge some fantastic friendships with people who have hearing difficulties, and I have the greatest pleasure of working alongside professional people who are themselves experts in the field of hearing loss. I am passionate about using my knowledge to help other people with hearing loss through public speaking, and providing Outreach work for the Charity Hearing Help Essex.
Meniere’s Disease is a chronic condition, but with the right help and expert advice there are various treatment strategies that can help minimise the effect on your life and relieve symptoms. Like with anything a strong mind-set also goes a long way and of course using the wonderful hearing aids that are available today!
