I have what?

Be honest, how many of you fellow sufferers had heard of Meniere's Disease before you were diagnosed with it?  I certainly had not, and now that I have lived with it for the past decade, I suppose it's easy to understand why.  If even our doctors and ENT consultants don't fully understand the disease, how can we expect anyone else to?  And if you can't understand it, if you can't empathise or sympathise with MD sufferers, if you have no real appreciation of how cruel the disease can be and how much of an impact it can have on the lives of those who have to live with it, how can you support it in any recognisable way?

My story is commonplace, yet it is also remarkably individual.  I share symptoms with my fellow sufferers, yet I suffer in my own way.  If it were not for the knowledge that many other people have my disease I could be driven mad, yet that knowledge does me no practical good whatsoever.  We are bound for similar destinations, yet we travel vastly disparate routes.

A word I seldom see on MD forums is 'frustrated', yet I believe this word would most accurately describe how each and every MD sufferer truly feels.  Frustrated at having the wretched disease, frustrated at seeing no potential cure, frustrated at the lack of doctors and ENT consultants with real expertise, frustrated at the lack of guidance provided by the medical profession, frustrated at how non-sufferers cannot understand how we feel, frustrated at how cynical people are when we try to reveal the depths of the suffering, frustrated at the impact MD has had on our lives.

This is me: initial episodes of vertigo have reduced in both frequency and potency of attacks since the first wave, but they are still there lurking in the shadows; tinnitus has increased from a constant single high-pitched whistle, to several very different sounds, from something like footsteps trudging through crisp snow, to a print machine thumping our the latest edition of SPIN; hearing loss, 'fullness' and ear pain has fluctuated with the insertion of grommets; imbalance, or 'giddiness' has increased from the odd attack every few days to a constant sensation 24/7 that ranges from a mild sensation of instability, to full-blown drunken, 'dressage stage', shambling and stumbling; the result of walking differently in order to compensate has brought on a persistent bad back and aching legs; sitting or walking 'rigidly' has resulted in daily severe headaches and a compressed nerve in my spine; I can only sleep if I have taken a sleeping pill; and the overall impact on whatever is going on due to the breakdown in communication between my eyes, ears and brain leaves me feeling physically and mentally exhausted and completely drained.  This induces the delightful 'brain fog' we are all familiar with.

That's the physical side.  Here's the emotional and psychological side: I have lost any measure of confidence I once had; I am rarely able to see family or friends unless they visit me; despite having revised my working conditions, I live in fear of losing my job; despite having an extremely supportive wife, I agonise about my condition because it has changed her life as well as mine, and there is a sense almost of mourning for what we once had.

I know there are people worse off, you only have to look at the wonderful PostPals website to know that and to give thanks that you do not suffer to the degree to which so many of those poor kids do.  So yes, I know life could be worse.  But that doesn't stop me from wishing it was as stable as it used to be.  I'm only human, after all.  I believe I've tackled this illness in a positive way, but I still feel as if I've lost the person I was and the life I should have had for the past ten years.  I'm not the kind of person to ask 'Why me?' because I've seen enough disabled children to know that such a question is futile.  In reality, you have to think 'Why not me?'.  And then you have to cope.

Even within the ranks of my fellow sufferers I am grateful that I do not experience the lives some of them have to endure.  I accept that my hearing is going, and that it is now going in both ears, and I have to prepare myself for that to be more acute at some point; I accept the 24/7/52 nature of my imbalance, and I have to manage that and again prepare myself for the fact that age can only worsen this aspect; I accept that, no matter how well I manage my condition, every now and then a major and violent spin will catch me out, and I just have to hope that the worst thing my head strikes as I fall is my wardrobe (the wardrobe seems to attract me like a magnet); I accept that with a chronic, progressive illness there is every chance that it will continue to get worse, but I must live in hope that it finds a level before it takes away even more of my life.

As for the future...well, I have to say I don't worry about that anymore.  I have learned that the best way to cope is to take life day by day, to manage the things within my control.  The future is not.  I hope that I am now at the point where I can meet with triumph and disaster and treat those two imposters just the same, as Rudyard Kipling suggests.