I’ve managed to lurch through life without too much in the way of serious diseases or disablement’s. One of the left of centre afflictions I’ve lived with for over sixteen years is Meniere’s. Some medicos call is Meniere’s disease (prompting the ignorant to worry that it’s contagious) or Meniere’s Syndrome (giving the impression that it’s either a genetic abnormality or worse some kind of mental health affliction). I prefer just Meniere’s. Basically I get to feel the Earth move occasionally manifested as a dizzy attack combined with severe nausea akin to a heavy drinking bout followed by a good hearty throwing up.
I’ve had an operation which helps to keep the wost attacks to a minimum though some large attacks returned a few months ago after a long period of absence.I have an anti nausea tablet that I place under my top lip to quell the symptoms in such cases which has the lovely side-effect of feeling afterwards like you’ve been gargling disinfectant and your top lip is then behaving like you’ve had a less than successful collagen injection.
Some of my worst attacks, which consist of the world turning upside down, a spinning head (on the inside not from the outside, now THAT would be fun!) and the inevitable nausea that accompanies this, have been quite comical sometimes. The experience is much the same as astronauts sometimes experience when weightless as the cause is due to fluid in the inner ear. For the astronauts this fluid is suddenly weightless and similar symptoms to Meniere’s are experienced.
One of my most bizarre downings was whilst shopping in Sainsburys, a supermarket chain in the UK. I was in the cereal aisle when the power to stand upright left me. The best thing to do is just lie down and do not move your head. This, of course, can be contrary to some of the many unspoken social rules and polite etiquette, especially those that apply in a supermarket like Sainsburys. Being British ,the vast majority of shoppers ignored me and no doubt somebody rushed to find a store security bod whose clomping feet and booming voice I soon heard. Believe me, even talking is an effort during the worst attacks as it seems to resonate around your fragile bonce and the tendency is just to make sounds akin to a third rate ventriloquist with lockjaw. I slowly explained to the official that I was ill and needed to just lie here for a bit. At the time I had a plastic card that I carried which featured the bizarre graphic seen above (Warning!! I’m radioactive and about to explode - that one caused a bit of panic the time I had an attack on the London underground not long after an IRA attack as nervy underground staff probably thought terrorists was now carrying cards with a statement of intent!), the symbol used by the UK meniere’s society, and a brief explanation of my condition with a plea not to move me or call an ambulance.The primary aim is to convince those in authority that you are not a) a nutter and b) off your tits on drugs. Sainsburys reaction to this has always left me bemused. They roped me off where I lay. Yes a cordon of orange sash was erected around where I lay and Mr Sainsbury Security was placed besides this bizarre “crime scene”like a museum guard. I felt like some kind of modern art exhibit. I remember hearing people pushing their shopping trolleys around me, not one ever asking what this was all about. Occasionally I could hear Mr Security saying ‘Mornin” as I presume he met the puzzled eyes of middle class shoppers disapproving glare. At one point I heard a woman say (I kid you not)”I can’t get to my crunchy nuts”. I was desperate to say that there was no answer to that (as I lie still and experience the world around me through sound alone I can sometimes get a little giggly as I form mental pictures in my head to match what I hear).I could not detect if Mr Security passed a box over but I always assume that this shopper went home without the crunchy nut cornflakes cereal that was roped off with me.
This attack lasted a good 45 minutes after which I slowly got up woozily from the cold floor and was then escorted offsite like some petty criminal. There have been many other equally bizarre drop locations such as a mainline London underground station and in the middle of Baker Street (play the song Gerry). It’s amazing how British reserve stops almost anybody from asking if you’re OK.
I still get attacks and Meniere’s has left me with diminished hearing (”Eh What, what they say”) in one ear and tinnitus (mine is like a whole room full of old CRT monitors or TV’s. That high pitched whine). Some people have it so bad and for such a long periods that they have an operation which removes the link to the brain that deals with balance and hence the spinning room experience. This cures the attacks but as a side effect will remove any residual hearing and they have to relearn a new technique of balance. It’s an extreme operation and not performed on anybody below a certain age.So it’s a little drastic.
I wanted to share my experience of Meniere’s if only to raise awareness and in case any other Meniere’s sufferers happen to stumble across this. There are much worse physical and mental problems that exist and how we cope with the imperfections of our human bodies differs from person to person. It can be hard to fully accept the old Buddhist belief that a life without suffering is a life not lived especially when applied to those of us who suffer great pain and anguish throughout their lives but all our imperfections are for whatever reason part of the journey.
Leave a Reply