It might not be that bad
Living with Sue who has Meniere’s
The weather, as expected, made life for Sue difficult over the past week. When she hasn’t been experiencing spin attacks she’s been doing her impression of a ventriloquist’s dummy – woodenly sat bolt upright and not saying much.
I’m not making fun of her, neither is that a heartless description to raise a chuckle, it’s actually how she is when spins are either attacking or threatening her. Driving home in the dark the other night (haven’t the nights drawn in suddenly?) Sue was sat in that position and looking straight ahead. Communication was therefore, pretty much limited to me occasionally stroking the back of her nearest hand whilst keeping a (sidelong) eye on her.
That took me back to some of the worst times when spins went on for days, even up to a week, at a time. Sue really struggled to do anything at all as even sitting or lying down didn’t bring relief as the world kept moving around her. As much as I tried to keep her company, I had to leave her when I went to work.
Again I’ll say what a marvellous development the mobile phone has been for deaf people, the times when Sue hit the deck and couldn’t get up she couldn’t text (out of focus) but could press my phone number, wait for a while, and then ask for help.
Being with someone not able to participate much in communication made me feel rather lonely – made me think of an old song about cowboys being lonely, even with someone they love. But my emotion wasn’t about me being unhappy with the situation – which, obviously, was beyond our control – rather it helped me to understand, just a little, how non-hearing folk must feel isolated when they are in company.
When you first read up on Meniere’s you’ll find loads and loads of references to how debilitating it can be; even a Consultant told us that Sue could be confined to bed for a very long time. But remember – DON’T PANIC. Yes, some might have that severity of the disease, but what isn’t always explained is that there are techniques for coping and that those techniques can be ‘taught’ at ENT.
Hearing Therapists are wonderful people, not just for the invaluable support they offer but also as the source for where to go for help. I can’t tell you what techniques Sue was taught in case they were specific to her, but not sitting like a wooden top after a spin attack helped tremendously.
Meniere’s isn’t nice. It is horrid and vicious, but don’t get hung up on how someone else suffered so much for so long. Research did help us, but at the same time, depressed the hell out of us. The Hearing Therapist, however, gave us hope and enabled us to live (I should stress, Sue lives with MD, I’m just a passenger) with Meniere’s without so much fear and with some hope.