Hi, I’m Vera. In my early 20s I had a bad dose of the flu, which left me with tinnitus (ringing in the ears) and some loss of high pitched hearing…… I remember realising I couldn’t hear bird song any more. I was warned things might deteriorate, and they did. Forty years later I was severely to profoundly deaf for higher frequency sounds, and moderately deaf for most of the rest. It was a slow progression. I didn’t wear hearing aids until I was 40…..first one analogue hearing aid, then two, then two digital hearing aids, subsequently (more than once) replaced with more powerful versions. They helped enormously for a long time but my hearing continued to deteriorate and I now have a cochlear implant in my right ear.
I started the blog in February 2016, in pre-implant days, and carried it through until July 2017. Then I had a rest! It started again in November 2017, focussing mainly on the story of the implant. You can find it all under “Cochlear Implant” on the menu bar.
In the Spring of 2019 I decided to retire the blog. I’m still planning to write about deafness but with a different focus – more about general issues and less about my own everyday life.
I’m planning to leave the blog in place for as long as seems relevant. I’ll still reply to comments, so if you’d like to get in touch do leave one.
So that’s me. Sixties. Retired. Living in a village in Yorkshire with husband Nigel, dog Izzy and a bionic ear.
More than a bit deaf 
Hello Vera.
i came across your blog earlier today via a link on a forum where people had been discussing hearing aids.
i instantly related to some of your posts and comments.
I will take the chance to have a good read over the next few days.
Do any of your posts give specific advise on how to deal with people who do not seem to understand how to interact with deaf people ?
i have been with my wife for over 20 years and on a near daily basis i have to ask her to speak up and speak more clearly. Some days i just don’t have the energy to smile and ask nicely.
Work is a very similar situation…
i can be in a meeting with 6 people.
2 of them speak to the whole room, they are clear and concise in their speech and i have no issues in hearing them. others will just look down at the table and mumble.
Hello Colin. Welcome!
I think the posts that come nearest are the fairly recent ones called “things that people don’t understand about deafness….” There are three. Noise (20 October). Hearing Aids Don’t Give You Your Hearing Back (10 January). The Pain Of It (20 January). They don’t cover exactly what you’re asking but they try to explain what, in my view, the hearing world doesn’t “get” – which I think is what the problem is. People don’t always do what we ask them to do because they don’t “get” just how hard we are having to try.
Sometimes it’s helpful to take the person to one side at a quiet moment (not when you are feeling cross with them or when you are really down) and try again to explain just how hard it is and how critical it is that they do what you ask. And how much you appreciate it when they do.
I was lucky in the workplace because I had bosses who were very aware and helpful. I would make sure I positioned myself in the best possible place in the room. I would say straight away if I couldn’t hear someone in a meeting (too embarrassing if you let it continue without speaking up). I would insist I could only follow the conversation if people spoke one at a time. That all worked for me. I took some teasing for insisting I couldn’t work in an open plan office and needed a quiet space, but it was only teasing and I got the quiet space.
Maybe I should do a post!
Don’t give up Colin. And good luck.
Hello Vera I saw your Blog after I had seen Mr Strachen at Airedale. I cant believe how ,like my story yours is.I also started with 1 aid in my 40’s and progressed just as you did. I am now classified Severe/profound tho’ I am now late 70’s Mr Strachen suggested implants if my graph goes down more than 5 db in the next year This made me a bit concernedbut your blog has encouraged me. Thanks
Anne
Hello Anne. I’m pleased you feel somewhat reassured. It’s the uncertainty about the future that is almost as frightening as the present reality, I found. It helps to hold on to knowing that there are technological solutions beyond hearing aids. Thank you so much for getting in touch and I hope all goes well for you, implant or not! Vera.
Hi Vera I had implant done in 2015 at St Thomes&Guy hospital and say to peopl go for it but you have work at with your lipreading
Hello Kenneth. Indeed. Go for it but get plenty of practice in and know that lip reading etc will still be really helpful. Best wishes. Vera.
I’m shortly to be assessed for a cochlea implant and am thrilled to bits, but our range master cooker has an induction hob.
Is this a problem with an implant?
Hello Jane. Sorry to be a while getting back to you. I’d not heard of this one but a Google search took me to the National Cochlear Implant Users Association saying that the only issue is that the speech processor (the bit on the outside of your head) could be damaged if you get it within 50cms, so perhaps an issue for children. My advice, though, would be to ask at the hospital or ask the manufacturer directly. They will know, and there are so many scare stories on the internet I’ve found it best to go straight to the professionals.
All very best wishes for your assessment. Hope it goes well for you.
Vera
Hi Vera
Thank you very much for your generous invite to share my fundraising page on your blog. I wasn’t sure where to post it so hope this is OK and I’m hoping the link below will work.
In August I will be abseiling 100m down the Spinnaker Tower in Portsmouth to raise much needed funds for the wonderful Hearing Dogs for Deaf. The more people sponsor me, the less chance I have of wiggling out of this stupendous commitment. Elmo has promised to watch – from the ground!
https://www.justgiving.com/fundraising/debfullbrookabseilspinnaker
Thank you again wonderful lady 🙂
Deb and the trusty Elmo
Hi Vera, its very interesting reading of everyone’s experiences. My own hearing started to diminish after a bout of tinnitus when I was 40. I was prescribed a hearing aid when I was 48 and now at 59 I have two. I currently work as an instrumental tutor (flute, piano, keyboard). I just wondered whether you knew of any other musicians (performers/teachers) who work with hearing loss – apart from Evelyn Glennie? Also I have just had an MRI to check for retro cochlear lesions (crossed fingers they haven’t found any!). Do you know anyone with experience of this?
Hello Helen. The place to look for stories about deaf musicians is the Limping Chicken website. They’ve run a number of pieces in the past I think. And no, sorry, I don’t know what a cochlear lesion is, much less know anyone who suffers from them. Must Google it! Sorry not to be able to give better answers to your questions.
Hi Vera.
Thanks for the prompt reply.
Yes I’m going to book in with Specsavers as they give a 90 day trial.
I have got 2 phonak digital aids at the moment with open domes as the filled in moulds play havoc with me ‘hearing’ my own speech – sounds similar to your experience. I’m now finding that I need more volume than I can get with these aids due to feedback. I have heard that the receiver in canal aids may be better? We shall have to see. I will let you know – the price isn’t an issue if it does the job!
Hi Vera. I have been following your posts for a while and it’s great to see someone in a similar position to myself and your ways of coping.
What experience do you have with private hearing aids? My NHS ones are ok but I’m sure there is better technology out there? Any advice would be appreciated. Thanks Joanne
Hi Joanne. I had private hearing aids when I was working. I needed digital aids before they were available on the NHS so I was referred to Access to Work and they and my employer, between them, funded two digital aids. When I was about to stop work, seven years ago, I got myself referred back to the NHS, then when my hearing aids needed replacing the NHS took over. My experience of the difference is that the private sector give you a lot more choice. I was able to borrow different types of hearing aids to try out, before deciding on the best ones for me. With the NHS it was much more “this or nothing”, indeed it was some time before I could get aids I was happy with. To begin with the NHS audiologist insisted I should persevere with a make that severely affected my speech comprehension (for the worse) and “boomed” terribly. I hated them and was persistent in saying they were wrong for me. Eventually they gave in and accepted what I was saying, and I was then given Phonak Nathos SP W, which have been fine. Had that not happened I think I would have been back at the private sector, whatever the cost.
You could always just make an appointment with a private audiologist and see what happens?? I’d be really interested to hear about it, if you do.
Very best wishes and thanks for reading the blog.
i was booked 1 dec but started with acold day before so they canceld it im due jan 17 i will let you know how i get on maureen
Good luck for January, then, and yes please do let me know how you get on.
Hear hear! (Sorrow about the awful pun).
Every time I read one of Vera’s blogs/articles I wonder at the incisive insights she gives of our deaf lives. She shines a light in to our world with brilliant, gentle humour – bravo! More, more!!
You are very generous Deb. Can’t wait for your own blog to launch.
Hi Vera. Love the blog. Usually read it alternating mutters of “I know just what you mean,” and pure laugh out loud moments.
Thanks Hilary
Hello Vera, I have noticed over the past few years as my hearing has deteriorated that I can no longer listen to music as the notes all sound out of tune. The only music I can recognise is if a song is sung that was popular in my youth! Do you know if this is common in people with severe hearing loss.
Hello Patricia. Yes, I think it IS common, certainly it applies to me and other people I know (with hearing loss) have said the same thing. I even think the phenomenon has a medical name but, try as I might, I can neither remember it or find it on the internet. I’ll keep looking and let you know when I find something. All best wishes. Vera.
Hi Patricia. I can’t help Vera out with an official name for this – suspect I just think it’s the musical memory kicking in.Highlight of my week is often driving on my own, windows firmly shut, singing along at top of my voice to CDs from the 60s! Can’t really hear the radio now but cue me into the Beatles and I’m off!
Oh wow, I can relate to driving along singing to CDs from the past. I do exactly the same.
Thank you for your blog. I too have mainly a high frequency hearing loss and some tinnitus (mainly musical tinnitus!) which was probably caused by measles as a child. It became evident at work when kept getting phone numbers wrong and causing confusion! I too have a dog and love walking with her and meeting people and having doggy conversations! The telephone is difficult and so very rarely answer it as cannot tell what people say but if it is a number I recognise then can phone back on my Doro smartphone which came with earphones and that is marginally better! I have NHS hearing aids but do not use them much as do not find they help as they amplify the sounds I already hear more than the ones I cannot hear! The Hearing Therapist tells me constant wearing with improve that…….. But it hasn’t.
I also have the silent alert smoke alarm and discovered after eight years that they have two batteries in the ceiling alarms! I had had someone changing just one in each…….
Josie
Hello Josie. One of the nicest things about blogging is when people in a similar situation get in touch to say hi, so thanks very much. I’m pleased you like the blog. On your hearing aids issue I was once given aids by the NHS that were absolutely hopeless. The audiologist kept stressing that it was just a case of getting used to them, so I tried, but to no avail. Eventually they relented and let me try another model. It was night and day – suddenly I had hearing aids that actually helped again. So I would advise not giving up on the situation but going back to audiology and stressing that you have tried but are not getting anywhere. There will be other models they could offer. Good luck anyway, and thanks again for getting in touch.
Hello Vera
I too read your blog after seeing the article in Action on Hearing Loss and it struck a lot of chords with me – late 50s, severe to profound age-acquired hearing loss, long-suffering patient & supportive husband, cat and dog lover – and I have been thinking about starting my own blog too. Well, more probably a dog-blog for Elmo, my marvellous Hearing Dog for Deaf People. As you say, dog walkers are a sociable bunch and an assistance dog opens many previously closed doors, metaphorically and physically. So keep up the good work with the blogs and I will let you know if I manage to launch one myself, following your excellent example.
Deb
Hello Deb. Goodness, it sounds like we are the same person existing in different bodies! Thanks so much for getting in touch. Your dog blog sounds like a fantastic idea, so let me know if you launch it and I will be one of your first followers. Best wishes. Vera.
This made me laugh as I use hearing aids and love dogs, but my current dog is completely deaf (from birth). A strange case of the deaf leading the deaf I always think.
Hi! I am severely deaf and awaiting a hearing dog, so looking forward to the future now!
Vera I love your blog. Read one only today in action for hearing loss mag entitled “my invisible world”. My life exactly. Sure wish more hearing people would read this and gain a real insight. Thank you too for the humour in your articles!
Thanks Heather. I find it really helps to laugh. Much better than being miserable.
Hi Vera, I have just signed up to your website and was amazed to find out that your early hearing loss was exactly like mine, flue, tinnitus, hearing loss in high frequencies. The only difference was I was in my early 30’s and had just had my third child. I hope to start lip reading classes quite soon if only to find like minded people!
Hello Pat. I’ve never met anyone with a similar hearing loss history so it’s great to hear from you. I found lip reading classes great fun, so I hope you do too. It’s good to meet people who know how it feels. Very best wishes. Vera.
Hello Vera, I just read your article in the Action on Hearing Loss. I enjoyed it very much. You have done such a lot. Congratulations on launching your blog.
Theresa
Thanks for your support Theresa, it’s much appreciated. Vera.
Hi Vera. My dad and I just had dinner. We were talking about a friend of his who is losing her hearing, so we visited your blog when we got back to his apartment. He’s going to pass your address along. Hope all is well there, Todd
Hi Todd. Great to hear from you. Give my best to your dad – I hope his friend finds the blog helpful. We are fine thanks….the sun shines and the ground has finally dried out after our long wet winter. Yesterday we were fell walking in the Lake District, which was wonderful. Love to all the Kovaks and Eastons.
Vera
hi vera im just like you with my hearing im due to go in for a cochlear implant soon what is your take on them i would like your thoughts on it when i read your page on actiononhearingloss it was like reading about my self maureen moss
Hello Maureen. I was tested for a cochlear implant in 2015. The result was that my hearing wasn’t quite bad enough to benefit from an implant then, but they encouraged me to go back when there was further deterioration. So it’s something I’m thinking about for the future. Good luck with yours – when do you go in for the operation? Vera.