Humble Beginnings

In July 2002, at the age of 44, I was attacked out of the blue by severe, ripping pains down the right side of my head.  This had followed a short period of feeling a little bit 'woozy'.  Because I'd had a lengthy period of pressurised work and was now taking a holiday, I dismissed it as a reaction to the stress.  However, as the pains continued and the 'wooziness' became more pronounced, I sought help from my GP.  Whilst her initial reaction was to suggest stress as a likely culprit, she nonetheless contacted my local ENT for an appointment.

Following a hearing test and a brief consultation, an MRI was ordered.  Of course they tell you it's standard, but of course you worry that they might find something awful in there.  To my surprise, they did find a brain, and fortunately nothing else.

There followed a year of periodic ENT visits for a variety of tests.  During this time, the occasional severe headaches had been replaced by constant nagging ones, I'd had several bouts of vertigo, I felt my balance out of whack a couple of days per week, my hearing became worse, and my tinnitus had me climbing the walls.  Eventually, following a second caloric test, and almost 18 months after my first real attack, I was diagnosed with Meniere's.  Whether Disease or Syndrome, or A-typical, they weren't quite sure, but either way I was dismissed with the kind and caring words: "You'll just have to learn to live with it."  Just the sort of thing you want to hear when you've just been told you have a 'chronic, progressiv eillness with no cure'.

In the early days I became a walking zombie due to lack of sleep, so in January 2003 I had my first ever sleeping pill.  I also started on SERC.  Ten years later I'm still taking both.  Everything I ever wanted or needed to know about MD I found on websites, forums, and the wonderful sheets provided by the Meniere's Society.  I must have encounted a dozen consultants or registrars along the way, and have yet to find one who was remotely useful or had any in-depth knowledge of what it was really like to live with this condition.

I get fewer attacks of full-blown vertigo these days, but they still do sneak up on me from time to time.  I've fallen – or 'dropped' – a few times, but usually only after I've exerted myself without caution.  At the moment I'm able to drive because I don't get attacks without warning while I am sitting down.

Hearing improved somewhat with a grommet – I now have a long-term T-Tube, but have been warned that there may come a point where a grommet is no longer an option, I fear for my hearing then – and the tinnitus still drives me crazy.  But for me, the main concerns are the imbalance, which is now a daily issue at varying degrees, plus the fatigue, which leaves me feeling exhausted and both mentally and physically washed out.

I live in hope of remission, but in fear of further worsening.  I live in hope that I will improve sufficiently to improve my ability to work until I am able to retire, but in fear of losing my job.  These issues, plus the fatigue and sense of loss, all add stress – which of course is yet another trigger.  Depression and a sense of helplessness creep in, and every time you have to cancel a night out or a day somewhere or a holiday, you feel as if the bloody disease has taken yet another bite out of you – or at least what you were.

Yet you have to try and be positive, if only for those around you.  Laugh at your clumsiness, forgetfulness, use the lack of hearing to your own benefit, and generally try to stay on top of it, rather than let it dominate you.  It’s not easy, but few worthwhile things are.  People say it's like a kind of grief, where you mourn the loss of who and what you were and the life you once had.  I have reached the acceptance stage, and have learned to embrace the good days.

Baby steps is what it's all about.  But as for 'what doesn't kill you makes you stronger', I'm not sure I'm that much of a 'glass is half full' person.