Learning About Hyperacusis

Since losing all my hearing in my left ear suddenly in 2011, I’ve suffered with bouts of sensitivity to sound. Ordinarily, I manage this by retreating to a quiet room or going to sit in the garden (if the weather’s decent). I read a book, write something, or distract myself with social media – or I sit quietly with our dog, Tilly, brushing or stroking her and generally trying to relax.

Photo credit: Richard Aspinall

Sometimes, I take out my hearing aids for a bit, other times, I switch them to ‘Comfort in Sound’ or ‘Speech in Noise’ but, usually, I manage to ride it out without getting too distressed by it all.

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The Trials and Triumphs of a City Break in Florence

An ambulance siren wails — and then another — it’s a piercing, high-pitched howl which cuts into my consciousness like a knife stabbing into my head. Slowly, the sound recedes but it is replaced by the peel of the bells of the cathedral, the clip-clop of the horses’ hooves and the rattle of cartwheels over cobbles. I’m on a city break to Florence and the noise is deafening and, at this very moment, I couldn’t have regretted this trip more.

Every Vespa’s engine noise is like a slap around the head. Each time a bus’ air brakes sound, I feel like I’ve been punched. This constant noise pollution is an assault on the senses the likes of which I have never known. It’s exhausting and terrifying in equal measures.

From what I can gather, parks and quiet spaces are hard to come by in this city: it’s not like Paris (ah, Pa-ree!) where you can readily escape to the peace and tranquillity of a public jardin at any time. This is Florence and I’m finding it pretty ‘full on’.

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Making Health and Social Care Information Accessible

The NHS in the UK recently launched a consultation into the proposed ‘Accessible Information Standard’ which recommends measures to meet patients’ communication needs, including the provision of Speech to Text. While I welcome these improvements — and boy, do we need them — it does beg a question as to why this is felt necessary in addition to the Equality Act 2010. As Laura Ringham wrote, way back in 2012:

There is a clear legal foundation for providing access to healthcare services for people with hearing loss. The Equality Act 2010 requires service providers to make reasonable adjustments to make their service accessible for people who are disabled, and states that they must anticipate and promote these adjustments rather than make them on a responsive basis.

Ringham L, 2012, Access All Areas? A report into the experiences of people with hearing loss when accessing healthcare, Action on Hearing Loss

So, why is it that the Health Service is so behind in terms of making reasonable adjustments so that patients can understand what is being said to them during examinations and consultations? And, where are the legal challenges to the shoddy status quo?

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A Life on the Ocean Wave

“Excuse me for asking… I know you said you had hearing loss but does your partner have hearing loss too because he seems to be really struggling to follow the conversation?”

Gulp.  He doesn’t — or rather ‘didn’t’ have hearing loss — not in the sense of having it confirmed by a professional but yes, whilst away on this particular trip we had both noticed how hard he was finding it to follow what was being said, especially when we were sitting in a group.

On a cruise

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If You’re Sinking, Who Will Save You?

One of the things I love about being part of this community is the international perspective. It’s a real eye-opener learning about the experiences of fellow hearing aid users in other countries. In this post, I’d like to explore the issue of a lack of ‘follow up support’ for adults new to hearing aids here in the UK and I would love to know if you have a different experience where you live. Of course, there may be some great local initiatives in the UK that I don’t know about so, if you have some examples of good practice, this would be a great place to share them!

Lifebuoy
Photo credit: Stephanie Booth

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Thank You to All the Lipreading Tutors Out There

The 8th to 12th September is Lipreading Awareness Week in the UK and so my post is in honour of the Lipreading tutors around the world. Thank you for all you do!

When I got my first analogue aid, I shoved it in a drawer because it amplified everything and the sounds of cutlery or a running tap scared the living daylights out of me. Nobody checked up on me and it was left up to me to ask to be referred to a different hospital where I’d discovered they were (at that time) trialling the use of digital hearing aids.

At the second hospital, I was given an ‘in the ear’ aid and told to ‘build up use gradually from an hour a day to all day’. The hearing aid was set far too loud and the audiologist refused to turn it down to make it bearable (let alone comfortable) and so, it too got shoved in a drawer never to see the light of day again.

I then enrolled on a lipreading class.

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Not Going With the Flow

As a Phonak user, I have found many benefits to my beloved Bi CROS hearing aids, (getting a sense of sounds coming from both left and right when I’m profoundly deaf in one ear for a start off) but there has always been one little niggle with the aids for me and that’s the Soundflow setting.

Flowing

In the Soundflow setting (the default setting that comes automatically with the hearing aid), I’ve had continual problems with background noises suddenly and unexpectedly cutting out. This is very disconcerting; especially when the ‘background noise’ is the very thing I’m listening out for, i.e. traffic. But, even if it’s the sound of a river flowing or the extractor fan on the cooker hood, it’s still an odd experience.

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The Tent, the Hearing Aids and Me

There’s a brilliant book called ‘The Tent, the Bucket and Me’ by Emma Kennedy, which tells of her childhood camping experiences. Now, I don’t profess to have any of her talent or wit, but I did recently go camping and I thought I’d share the trials and tribulations of camping as a hearing aid user and I have to say that I foresaw none of these difficulties.

Tent

Given that I get on with my life without proactively thinking abut my hearing aids on a day-to-day basis (beyond making sure I have spare batteries in every handbag and every coat pocket), I was not prepared for how much harder camping would make communicating.

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Silence Is Golden… Sometimes

The times I feel ‘least deaf’ are actually the times when I am most deaf. Allow me to explain…

When my partner’s at home, I tend to use my hearing aids all day so that I’m ready for any interaction. If he comes into a room to speak to me, I want to be able to know what he’s saying, so, wearing my aids at all times seems a reasonable course of action.

silence is golden sometimes

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You Are Not Alone

When I was first told I needed a hearing aid, the last thing I wanted was for other people to know about it. I felt like I was the only person in the world with this ‘problem’ and that it was a private matter and not something I wished to discuss with other people. I now wonder if, because I discovered my deafness in a hospital setting, that’s why I felt that way about it: it was a medical diagnosis and therefore private, right?

Alone

I wonder if I’d had my hearing tested and been told I needed a hearing aid at an independent dispenser’s or an opticians with a hearing care centre, if I would have felt differently about the whole experience. (I may still have been advised to go to hospital later to discuss the prognosis but perhaps the initial experience of being told I needed a hearing aid might not have felt so ‘medicalised’.) Perhaps it would have felt more like being told I needed glasses, which was easy enough to come to terms with, as I recall.

Anyway, in the beginning, I couldn’t get used to the ‘in the ear’ hearing aid I’d been given at the hospital: it was so uncomfortable, made my ear and jaw sore and the volume was ‘deafening’ and it gave me terrible pains in my head after just a few hours of use. I consigned it to a drawer and instead embarked upon lip-reading classes. I remember that my goal was to become so proficient at lip-reading that nobody would know I had hearing loss. (I think I’d seen one too many spy movies with people looking through binoculars and reporting what was being said!)

My plan worked well for a time but then my hearing loss got a lot greater and I had to go and have another hearing test.

The student who announced the results of my hearing test did not realise the impact of what she was saying to me when she told me the hearing loss had begun in the other ear. She said it so matter of factly — but to me, I saw it as the ‘beginning of the end’. I needed hearing aids — not just one but TWO, and I was going slowly deaf in both ears. I was heart-broken.

The hospital offered me another in-the-ear aid but after the pain I’d had with the first one, I couldn’t face it. I chose to go private. When the audiologist told me I needed BTEs, again I was upset. “They’re just for really deaf people right? Surely I didn’t need those? I worried they’d be really noticeable but actually, I got the ‘open ear fit’ (the plastic tips have air holes in them) and they were light, discreet, and I honestly couldn’t always feel them. It was a revelation after having the ‘ear full’ experience.

open domes

When I did finally get these discreet hearing aids, I felt much less self-conscious about them and I started to tell a few people that I had hearing difficulties and when I did, I was amazed at how often people’s replies were that they were deaf in one ear or one of their relatives or their best friend. People at work told me about other people at work who had hearing aids and I’d never guessed (and why should I?). But it was far more common than I’d ever realised. I even showed my hearing aids to a couple of people and recommended my audiologist when it turned out they too had hearing loss. (I should have been on commission!)

I started to feel OK about having hearing aids, and the more people I met who also had hearing problems, the better I felt. Knowing other people trundle along through life with the same problems as you helps to put it all into perspective. Once the dust settles, you just ‘get on with it’, don’t you?