The next three blogs will be dedicated to something I rarely talk about. Having recently signed up to be a 'voice for vertigo', associated with the Meniere’s Society, I decided to raise some awareness on these pages for the first time.
Having lived with Meniere’s (a disease of the inner ear) for 17 years now, and having also inflicted the same condition upon my DI Bliss character, I think I’ve come to understand the illness quite well. I have always supported the society and the crucial role they play in helping sufferers, and I wanted to offer up these reflections on how the disease has impacted on my own life.
Thank you for this indulgence.
In the summer of 2002 I was driving down to Wiltshire when I was overcome by a series of stabbing pains shooting down the back of my head just behind my right ear. Within ten minutes of arriving at my destination I was violently ill and had to lie down as I could hardly stand. The room continued to spin as if I had just returned from a long evening on the lash, and I was ill several more times afterwards.
I regarded it as just ‘one of those things’ until the next occasion, and did the same thing again until the familiar set of symptoms struck me for a third time. I went to see my GP, who at the time was a lovely woman who would not have looked out of place as an old school marm on the set of the original St Trinians film. She mentioned something called Meniere’s to me, but told me I would have to be referred to ENT who would carry out a series of tests. Eighteen months’ later and my doc’s initial diagnosis was proven correct.
By this time I was in some distress. The cycle of vertigo and sickness had been joined by aural fullness, hearing loss, loud and ever-changing tinnitus, plus immense fatigue and a great deal of brainfog which caused some woolly thinking and confusion at times. I’d also experienced several ‘drop attacks’ – which literally resulted in my falling to the floor as if my legs had been suddenly removed – and as you might imagine this led to overwhelming uncertainty and trepidation whenever I was standing or walking. One of the first tests the ENT carried out was an MRI, so a brain tumour was ruled out early on as the possible cause of my symptoms. However, I came to understand that being diagnosed with a life-changing and chronic condition is, whilst better than a life-threatening one, no fun at all.
People experience different levels of help and understanding from the various ENT departments around the country, but I have to say mine were hopeless. On the day I received my diagnosis it was left to a registrar rather than my consultant to inform me, a young man who was decidedly uninterested to the point of being bored, and who, when I asked what to do next, responded by blithely telling me to ‘just deal with it.’ That was it. With the casual advice to watch my intake of salt, I was dismissed. No additional advice, no word of comfort, no ideas as to how to begin coping with something that had taken over my life and wasn’t about to go away any day soon. It wasn’t a ‘sexy’ diagnosis, not something they could repair. It had no cure, so they did not appear to care. Medical references at the time suggested Meniere’s would burn itself out and everything would eventually be fine. From experience I can tell you this is so often not the case.
In the days that followed I discovered the Meniere’s Society, and I sent off for an information pack containing pretty much every piece of literature they had available on the subject. It’s stretching things only slightly when I say that I think they saved my sanity. I was teetering on the edge of something – certainly of not being able to handle either my condition or my diagnosis – but the info I received genuinely helped to put things in perspective, especially when it came to how it would impact on my immediate family. I could see that I had a fight on my hands, battles ahead that I would simply have to win, but at the very least the Meniere’s Society had provided me with the armour I would need.
Part Two to follow soon.