My name is Colin Hetherington and I suffer with Usher Syndrome which is retinitis pigmentosa (blindness) which gives me all sorts of daily troubles from glare tonight blindness, headaches flashing interference and tunnel vision all this coupled with hearing loss .
My current state of affairs are about 3 degrees of vision in my tunnel with moderate to severe hearing loss.I have to wear a peak cap for glare and reaction lenses to protect my eyes from the sun. I currently wear Phonak hearing aids with a neckloop which is Bluetooth but quite frankly it’s out date. Technology has moved on a lot since then. Oh, and I’ve got a guide dog Jason.
I’ve recently had an appointment to get fitted for new ear moulds to be told you have a wax build in your ears so up come back in 2 weeks!
In my desperation to deal with the wax problem I did the stupid thing of purchasing cotton buds, not a good idea. Please do not try this at home they all advised me anything smaller than an elbow should not be placed in ones ear! After pulling out masses of wax and thinking I was doing a great job I suddenly went deaf in one ear and lost about half my hearing In the other! I persevered for a few days but started to think I had done some serious damage or even lost a cotton bud! I had it checked by the nurse and then a doctor who assured me it was only wax that I had forced down the canal – Advice given NOTHING SMALLER THAN AN ELBOW in there sir. Use ear drops to soften the wax and come back in ten days.
Let me tell you this I’ve never been so exhausted trying to pick up on conversations also concentrating with my guide dog it really did drain me so so much I actually felt like I was losing my confidence and a dark cloud was looming above me . If I’m totally honest I really haven’t been myself and a bit worrried my hearing may not get back to what it was and that’s crap but its what my brain is used to.
I’d filled my ears for nine nights with ear wax remover hoping and praying in the morning it would be better but it never happened. I found my self sitting in a room with loads going on but I could not pick up the noises it was like being in an echo chamber with delayed reaction like waiting a few seconds after the conversation had ended for my brain to process. This is hard hard work and it’s been going on for about three weeks. I’ve felt very vulnerable out with my guide dog in the dark with my narrow vision night blindness and newly acquired extra deafness.
Today my doctors appointment came round. I was dreading the result as much as I was looking forward to it incase I had actually damaged something inside or flatted even more of the little hairs we need to stand up right in the inner ear .
Within ten minutes she had changed my life no more wax I felt like a miracle had been performed and suddenly found my mobility a lot lot easier. Straight up the road cotton buds in the bin. So for me and many others like me it’s a case of we need the best there is to compensate for our senses . I won’t be doing that again that’s for sure . Deafness does make you more blind!
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