Audiology 24/08/2022

Published August 25, 2022 by goshgurl95

What a day… firstly my car went tits up this morning. Driving along and my car started making an awful noise, so I just assume I’ve not got in gear properly .it then absolutely stinks so I’m guessing I’m giving it too much gas, except my car isn’t moving whatsoever. Defintely in gear.Defintely not moving. it then decides it will only reverse . Brilliant…just what I need when there’s cars coming up behind me and I also have my little one in the back.

Naturally I’m freaking out and panicking ,traffic behind me are beeping ,shouting abuse or gesturing at me ,a couple people stop next to me wind down their window ask what’s going on and just keep driving.

Eventually I somehow manage to reverse my car a yard or so up the road up a muddy bank/ someone’s driveway before it totally gives up the back end of my car is safely out of the road but the front is still partially in the road.

Thankfully I wasn’t stuck for long before the breakdown service came to rescue me.I was told I was a priority due to having my little one in the car with me, I was told someone would be with me within the hour. Just under 10 minutes later help arrived. I was towed to my local garage and then after being stuck there for 2 hours was rescued by dad.

Got back to mine only to realise I’ve left my door keys in my car so I’m now locked out.. excellent… jump back into dad’s car he’s now shouting and swearing at me. Get to my parents have literally 10 minutes if that to make myself and my little one something to eat before jumping back in dad’s car to get back to mine with the spare key. Once in I literally have to run to get back in my dad’s car and get on my way to London for my audiology appointment.

Somehow I managed to get to the hospital in London early so I had time to grab a drink, security wasn’t that great today standing on their phone on entrance and didn’t bother asking me to mask up and Sanitise ( I had my own mask on but I had issues last time with them allowing this and my own sanitiser) I went straight to reception and like last time I was here ,I struggle to hear the receptionist she was very ,very quietly spoken ,I have no idea what she’s saying she’s then trying to shout through her mask and the perspec between us which is still barely audible, eventually we get there and I’m told to head to floor 5.

I arrive on the fifth floor and struggle to hear or see the receptionists lips,OK he has removed his mask but he’s sat quite a way back from the perspex screen ,there’s giant windows opposite so the sun is hitting the perspex making it hard to see his lips. I guess my way through what he’s asking and where he’s telling me to go. I’m not sure if he has told me to sit in waiting zone B or C.. so take a gamble at B.

I take a seat directly opposite the double doors for optimal chances of hearing my name called and take out my book. Its only when I’ve read a couple of chapters that I check the time and find it’s 4.47pm nearly 20 minutes past my scheduled appointment time,I think to myself that it’s strange as there’s literally nobody else in any of the waiting areas, nobody coming in or out. I decide to continue reading for 10 minutes and then I’ll go and find out whats happening as it will then be 30 mins .

A couple pages later I have just by chance looked up from my book to turn the page when I out the corner of my eye see a member of staff walking towards me and waving that I realise I’m being called through. She comes right up to me before speaking to me (always a bonus when your deaf and staff are deaf aware..sadly its a rarity)

The appointment today is just a check up of how I’ve been getting on with my hearing aid ,BAHA and hearing in general ,as well as doing a couple of tests we ran out of time to do last time I was here (6 weeks ago) .

The lady I’m seeing today is …Farida?.. Farula?… one of the two ladies I saw 6 weeks ago. I’m still not sure what her name is even though she told me again today ,I still couldn’t catch it and felt to silly to ask her to repeat it,especially after meeting her at my last appointment.. I couldn’t get a good enough view of her name badge either ..sorry maybe third time lucky ! Sorry if your reading this ( although I highly doubt you will do) ..I know its fa something I just keep missing it. Maybe Farula? Farida? I know it’s a Fa sound and its a short name..

Anyway ,she starts off by removing her mask and saying I can remove mine too (another huge deaf awareness bonus, last time Anne was in a mask and Fa.. was in a visor but no mask is much easier) she begins by asking how I’m finding my hearing aid .I was totally honest and said its OK but could be a lot better .its helping but equally it’s not, what I mean by this is no its not currently making any or much difference ,but yes I do feel it could make a difference . Other people seem to spot when I’m wearing it and when I’m not although this said for me personally the difference has been minimal .

The reason I say this is because I’m using it on full volume at all times and even then it doesn’t seem enough volume and I find myself straining to hear , reaching for the volume slider.

I’m still really struggling to hear, comprehend and understand speech and quieter sounds in particular . There is still a lot I’m missing, such as I still can’t hear things such as my front door .For example the other day my mum came round and I didn’t hear her at my front door (usually she just let’s herself in but she didn’t have her key to mine ) she tried calling my mobile which I also didn’t hear as it wasn’t on my person . It was only when my little one pointed over the stair gate on my lounge and kept pointing and babbling at the gate that I went out into the hallway and saw the door handle going..My mum had been stood there for 20 minutes. I’m sure my little one was trying to tell me “mummy door “I don’t ever want to have to rely on my little one to be my ears it just isn’t right or fair.

As a result I feel I’m lacking independence in some respects having to rely on other people to essentially be my ears and hear for me .If I’m expecting a parcel that has to be signed for I either have sit like a mad person rigidly tracking it ,sitting by the door in anticipation or more commonly one of my parents has to be here. It affects me socially as I can’t and don’t really interact with many mummy’s at baby groups and classes and keep myself to myself. Where possible I don’t let it affect me but it’s only times like this I sit back and realise the effects it has on my life (not that I often open and discuss that side of life because its just how it is really its just part of me)

I also explained how I couldn’t hear a car coming up behind me when walking down a country road with the pram. I’m still struggling to hear the radio or satnav if it’s not on full volume ,even then my radio could be louder it’s only just clear and “normal” comfortable level.

I informed Fa ( OK I’m just going to say the audiologist now because I seriously don’t know what her name is and it’s making it impossible to type) that after the first week the sound began to dip so sometimes it would sound OK but other times it would be really really faint and eventually there’s now no sound at all . She explained this shouldn’t happen and checked my left ear to ensure it wasn’t an issue of wax or some form of blockage causing the wasn’t. She checked the tubing for any blockages. Nothing.

The audiologist took a look at the hearing aid and said she couldn’t see anything wrong with the actual aid,mould or tubing and that it was working and asked me to put it in and test it..Nothing. No sound at all. It’s as though I’ve put it in and not switched it on ,so I guess a bit like putting an earplug or something in ,no sound is coming in or out. She then takes it off and pulls it all a part and gives me a new hearing aid same make,model ,colour etc but with the original tubing and mould which works absolutely fine, she tells me how she thinks the aid itself is dead or faulty. Of course it is ,it wouldn’t be me if I didn’t get the faulty one would it 🤣 .

Once the new aid is confirmed to be working it is then tuned to my audiogram needs.

I let her know that although it’s working its not loud enough, no problem she tells me, it can be turned up, she turns it up one notch doesn’t make any difference

She turns it up another notch still no difference, she turns it up a 3rd notch and it’s ever so slightly better but not anything overly noticeable nothing to write home about ,so it gets turned up again, we’re getting there now but still not quite there another notch or two and things seem to be clearer and louder.

We agree to leave it there as audiology say they don’t want to overdo it and turn it up too much but reassure me there’s plenty of room to adjust and turn it up again if needed and I can still control the volume as before( up 4 or down 4) one ear tackled it’s onto the next.

My right side, I explain I haven’t worn the BAHA for more than a few minutes, on two separate occasions for two reasons .The first one being it’s too sore and painful the first time I wore it my abutment bled and swelled up .I couldn’t even get my nail round the edge of it and it was very tender ,constantly felt like it was throbbing leaving me with headaches to the right side of my head, around the abutment and partly down my neck which lasted a good 2 weeks.

Leading me to regularly reach for the paracetamol (anyone who knows me will know I never take pain killers unless I really ,really, really have to)

Secondly I haven’t worn it because its too overwhelming.To the point even my keys hitting against the keyring was too much, and saw them very, very quickly launched out of my hand and up my hallway because it was so overwhelming .The only way I could make it sound OK was if I turned the volume right the way down to the absolute minimum but then I couldn’t hear anything so kind of defeated the object of wearing it.

The audiologist (sorry I hate not using actual names) then checked my abutment and felt at different parts asking if it was sore,yes I replied although it was sore , it was nowhere near as sore as it can be . She then asks whether I’ve tried the BAHA for my left..ermmm. no.. that’s not possible. I have a surgically implanted titanium screw/abutment in my skull bone where the BAHA clips onto ,on my right. I don’t have the implant on the left ..No I haven’t been able to try this combination .

I’m asked if I’ve tried using it on a soft band . I explain how I’ve only ever had it on the wire Alice type band when I was trialing it before surgery which worked well but I never thought to try it on my left, nor do I own or have a soft band on loan so I could try this combination . Even if I did realistically for me that’s not a long term solution .

I’m then asked to do my least favourite of the hearing tests that we didn’t have time for last time….The dreaded speech recognition test . I just don’t like this one because I always feel silly, I feel I can fail at this more ,than the pressing the button when you hear the bleeps and tones. Essentially for this test your played a range of different sentences one after another. We start off with sentences in sound so basically there’s something going on as well as the person speaking . This is tested as my right ear with BAHA,right ear without BAHA, Left with hearing aid and left without.

We start off with my right with the BAHA (During the test I’m not able to control the volume of the aiding and its set to a certain level on the computer) I’m told it doesn’t matter if I don’t get every word as I’ll still get points even if I only get one or two of the words, and to take a guess at what’s said if I don’t know .

My right ear with BAHA (I’m asked to do it even though it hurts just so audiology can prove in their reports that it does work and have benefits for me but isn’t a viable option) this doesn’t go too badly the first couple I think I get all of ,then I have to really focus hard and I’m getting a couple of words or really taking a guess at it was it the father wrote a letter or the farmer wrote a letter? There’s something about a book or story and a bag and some milk.

After this we move onto my right without any aiding ,this is a particularly challenging one because I have no hearing at all on my right without anything ,we do a couple of sentences which are all a complete guess before the test is stopped as the audiologist has realised this test is a little unfair as my left is actually taking over and doing all the work .

As a result I’m asked to put an earplug in my left ear and headphones are placed on me to totally block off my left ear to make it a fair test.. I scored 0 on this .I couldn’t make out any of the sentences. I didn’t always know a sentence had played until I realised the audiologist was staring at me and kindly shaking her head . Thethose I could just about make out something were just too inaudible to even guess .

My left ear with hearing aid I kind of in some ways feel was at a disadvantage. My left ear was practically on top of the speaker that was playing the sentences, so it made it slightly easier. that said I did still need to really concentrate and focus and needed to do a lot of puzzle solving and guessing was it a dog on the park? But that makes no sense why would a dog be on a park? It would be in it not on it.

My left without aiding wasn’t great again a lot of guessing or only getting the odd word something about milk ,someone has something, something about money.

I’m then told I scored 100% overall for all of the test..ermm.. OK.. how? The majority of the sentences I’ve only been able to give one ,maybe two word of the sentence or a vague idea ? My right without any aiding I couldn’t get anything at all ? I’ve literally struggled the whole way through? Surely 100% should be instantly saying the full sentences word or word no guessing needed and not having to sit there and try to process and work out what you heard ..right..

My BAHA is handed back and I’m told it will go back into circulation either for trial purposes or to someone else. It’s sad to see it go in some respects as it’s kind of an end of an era but equally it’s serving no purpose for me so it may as well go to someone it’s actually going to make a difference to and in some ways I’m glad to see the back of it .

I’m told the next steps is they will put together all of my test results and reports to present at their next case meeting, where they will discuss whether I get the go ahead for the magnetic version of the BAHA or not, if not what next steps or solutions may be for me .

Once I eventually have my MRI and CT Scans done they will re-review everything and it will then be sent to my consultant Mr Manjaly ,who will then see me again to give me the results and tell me whether I will get the go ahead for the magnetic BAHA ,another type of implant or what next steps are.

I’m told that this is all they can do for me until the scans are back and they’ve discussed everything at the case meeting . The audiologist tells me how she doesn’t think I need to be having appointments with the doctors just yet because I’m not at that stage yet.She goes on to tell me how she doesn’t think I’ll get the approval for the magnet , as I seem to be doing just as well with the hearing aid as I did the BAHA but it may be an option further down the line in years to come.

I wouldn’t personally say there’s any comparison, especially when I’ve struggled and guessed my way through today’s testings, still can’t hear my name being called and missing a lot of spund still..

..Errmm okkayy baring in mind, I can’t wear a BAHA and haven’t been able to for a number of years. Both my hearing aid and BAHA are different sides,totally different and I have totally different hearing levels and needs in each , I have complete deafness to my right and a moderate loss to my left.

The appointment should have 0 taken 90 minutes. Instead I’m out in just slightly under 20 minutes .I just feel slightly underwhelmed and in some respects as though I’m no further forward nor have I so far got any answers or solutions . I just feel I’m hitting my head on a brick wall going round in circles ,as though I’m being fobbed off once again that everything is fine when clearly it isn’t.

Is it noted anywhere that I missed my name numerous times and had my consultant looking up and down the waiting area numerous times to find me as I couldn’t hear my name, nor have I been able to on either audiology appointments so far, I can’t hear basic things like cars ,doorbell , and I can’t follow a conversation without puzzle solving and guesswork. I’m loosing my independence because I have to rely on others and oh its also probably why I’ve burnt my clutch out too because I can’t hear when I need to change gears but these things don’t ever seem to matter abd ifs just a case of learn to live with it and get on with it I hate that I’ve just ranted and moaned it’s not me at all ,Especially so when it comes to my hearing,because I do just get on with it…well at least I like to think so anyway.

I guess really it’s out of my hands for now and just a case of remaining positive ,being patient ,being hopefully that I won’t just get fobbed off and brushed under the carpet again and that someone in that meeting will see it from my point and make this one less fight on my part. Worse comes to it I’ll keep fighting until I’m taken seriously and results are achieved. Enough is enough its time to realise and accept dearness.. and to think it all started off so well in terms of deaf awareness ,I guess I spoke a little too soon.Fight or no fight I’ve got this.


Hearing Aid Diary Week one 15/07/22 – 21/07/22

Published July 25, 2022 by goshgurl95

I’ve decided to keep a diary record of how I’m getting on and finding my hearing aid ,nobody has asked me to do this just purely doing it for for my benefit as something to look back on and see the journey and hopefully progress too. I posted on Instagram saying I was doing this and asked if anyone would be interested in me publishing/sharing them so as requested  I will be sharing weekly diaries of how im getting on with my hearing aid …here’s the first installment… it’s been a week already, i know madness

Day 1: 15/07/22

Used my hearing aid all day today. Today I  went to a friends for picnic lunch (3 mummy’s 3 babies total)  haven’t seen the host mummy  in months. Walking to her house I found sounds were much more  heightened,  cars much clearer and louder . I felt as though I was more aware of surroundings despite not having any spacial hearing, I felt like I knew the road was busy from the noise as opposed to having to keep looking and  checking. Once at the host mummy’s house and in her garden there were lots noises and sounds to be heard  (not sure what most of  the sounds were) me being me I  felt  too silly to ask so didn’t. So I guess now I’ll never know now 🙃

I Felt as though I needed to change the hearing aid  programme to speech in noise to focus on my two friends and thier babies, can’t lie it was still a bit of a struggle and I felt as though I was shouting so withdrew from a lot of the conversations  keeping an eye and playing with the little ones instead.

I found that I needed the hearing aid volume level on level 3,not sure if this is due to being outside and more noise,distraction going on compared to if we were indoors.

On a few  occasions  the hearing aid earbud/earpiece (not sure of its proper name) slipped out of position and I  needed to keep pushing back in not sure if heat related or if I just hadn’t put it in properly in the first place?  either way it made me feel conscious like like friends thought I was picking at my ear, digging for treasure…I definitely can confirm I wasn’t.

There was occasions while at my friend’s when I  couldn’t tell the difference between using the hearing aid or not ( both sounded as though didn’t have it in) again could just be where my  brain  is having to re-learn to hear sounds again and be trained to hear and recognise them again.

Walking home  I could only hear cars and the wind nothing else including my own voice or my daughters babbles despite her always being parent facing in the pram partly due to my  hearing .

I  changed the setting back to programme 1 but it  didn’t make much difference,  slowly I  turned the volume up to 3 but still no difference. Eventually I felt that I needed to turn it  up to volume 4 before I  noticed the difference in sounds and felt it was making a difference although it was still a struggle I felt I had a little more access to sounds. 

This evening while reading my book   I fancied a lemonade. I went to the kitchen to get one and it was only when I sat down I could hear something but couldn’t work out what it was .I had nobody I could ask what what was.

Eventually after a few minutes I realised I was hearing my lemonade, confused I posted to social media asking if it has a sound, surely it doesn’t?… Right? … Apparently it does and I had indeed heard the bubbles of a fizzy drink for the first time.

I always thought it was silent after the initial hiss of the can or bottle being opened.

Who would’ve thought it ! I then like a mad woman sat there listening with the glass to my ear (a bit like you would do as a kid listening to your rice krispies for the snap,crackle and pop (although come to mention it I’ve never heard this either perhaps I now need to invest in some to try it out again) who says you can’t teach an old dog new tricks hey!.genuinely baffled.

Excuse the state of me,but this photo genuinely makes me laugh 🤣 there was a video  but I can’t find it now 🤣

Day 2 16/07/21

I Haven’t really used  my hearing aid this morning as I wanted a slow morning  super chilled and relaxed, my daughter was in sight so I felt I could rely on my sight for a while. I felt guilty for not putting my hearing aid straight on the moment I woke up ,like I had yesterday but each day is a new day.

I Popped my hearing aid in  for few hours as I wanted walk to town and go to the  library. Not sure if it’s the heat but I  felt like the actual aid was hurting my ear today like my ear was swollen and kept pushing the earpiece out ,I still persevered (My ear definitely wasn’t actually swollen,just that sort of sensation like it was hot and puffy).

When I arrived at the library I felt very  conscious ,more so than perhaps I would usually have done.  I worried was my voice OK?, was it too loud?,was I shouting?, was I being  too quiet? ,could I be heard/understood? Nobody commented to let me know either way so I hope I wasn’t shouting or too loud .I would like to hope someone would have mentioned it if I was especially as I needed to speak with a librarian.

A few people looked when I was speaking to my daughter making me conscious all over again was I too loud? Or did they just so happen to be looking over anyway? 

The feeling like my ear was swollen and the ear piece keep coming out every few minutes  lasted all of the afternoon and evening, eventually part way through dinner I decided to removed it and felt better for peace and back to the quiet “bubble”( what I call my world when unaided) It was honestly just a pure feeling of relief .

I was gutted that I didn’t manage long today but something has got to be better than nothing. I don’t want to push it and cause further issues.

Day 3: 17/07/21

Wore my  Hearing aid  for 7.5 hours today, much better than yesterdays attempt .Today I   Went to a charity relaunch of a new baby class I haven’t yet tried, where we brought the storyof Elmer the elephant to life through movement, actions ,Sensory play,singing and props .I found the hall to be very echoey and extremely difficult to follow information given and what was happening in the trial class ,I tried adjusting the hearing aid programme to speech in noise which did cut out the echoing however made the class teacher sound even quieter- not helped by the fact she already naturally speaks very softly and quietly. Felt pretty isolated and like i was relying on visual cues from other parents of what prop to be getting out the bag or what we should be doing.

Once the class had finished there were other local businesses with stalls to browse some with classes of their own,others offering advice of raising little ones and others selling homemade items such as handmade bags ,cushions, hairbands and cakes to book stalls , a book-bola an alternative to tombola where you Win a book as the prize . I felt like I couldn’t really interact with other parents or stall holders as I couldn’t hear or understand what was going on.

0After this event I went to my parents for the rest of the day ( I’m trying to be as active as possible to get the best possible experience and results) . I needed to have my Hearing aid  on volume 4 all day as I just  didn’t feel  I could hear well enough-(volume  or clarity wise  on anything lower)

All day my parents repeatedly told me I was  shouting (it didn’t sound or fee  like I was to me personally) A few times I actually forgot that I had my hearing  aid in and had to check it was working a few times as nothing sounded any different. Maybe I’m just getting used to it? Although it feels like it’s probably too early isn’t it?

Late into the afternoon my  mum was  playing with my daughter in the garden  ,my daughter stopped and  began looking around  (as had I ) my mum asked my daughter if she could hear the birds singing – . This was the first time that I have ever (or at least as far back as I can remember anyway) that I’ve heard birds singing.

It was a  really beautiful moment  to expirence especially so as it was a first for my daughter  so we learnt  together what the birds sound like. Not many mummy’s can say they’ve been lucky enough to experience a first together like that ❤

Day 4: 18/07/21 

Due to the  heatwave measuring 36⁰ my  Hearing aid has  not been used today due to increased  risks of itchiness and moisture exposure 

                    Day 5 : 19/07/21

Due to the  heatwave measuring 37⁰ my  Hearing aid has  not been used today due to risk of increased itchiness and moisture exposure.

                 Day 6 20/07/21

Today I have Worn my hearing aid all day ( although Oticon on app only logged 2hrs not sure why, perhaps lack of connection to bluetooth /WiFi?)

I found out today that even with my hearing aid I Still cannot hear my doorbell (specialist deaf doorbell). This morning I had been expecting workmen ,they had provided  no Estimsted time of arrival ,literally just sometime this morning. I had been keeping and eye out as I always do when expecting someone or a delivery.

 around 9am I decided to take some rubbish out to the communal  bins and had a fright when I quite literally jumped out of my skin as I opened my front door to find said workman standing on my doorstep about to phone my mum (he has done work at hers recently and had her number as a backup for me incase this happened)

I’m finding that there is no difference with hearing peoples voices they  sound the  same as when haven’t got aid in ,although mine initially sounds really different to what I thought it did  which I don’t like ,do I really sound like that ? .not sure if I’m doing something wrong? 

When walking to my parents today I Couldn’t hear and I did not  notice that there was  a car driving up behind me on a country road ( I was walking in the middle of it pushing my daughters pram .its not very often there are cars on this path, although there are a few like today coming and going from allotments . The car made me jump when it weaved round me. It was a  very scary expirence and obviously not safe nor something I want to be a repeated thing . I had hoped I would have heard the car with my hearing aid in and on full volume.

Later this Evening just before  my daughter was due to go  to bed, I was sitting in my lounge with the window open when I heard someone in another flat, what sounded like throwing  their plate on the table and then into a sink before arguing with someone ( I didn’t recognise either voices as belonging to my neighbours) i found this strange because Ive never heard other people in their flats before and also because I couldn’t hear my daughter who was in the same room .surely I should have been able to hear my daughter clearer that my neighbours? very strange..  

I also Heard a train for the first time from my flat tonight. I didn’t know they could be heard from my flat, as the nearest part of the train track is a good 10 minute walk from mine is this actually possible to hear from that distance ?

                 Day 7 21/7/21

This morning I had a Baby group with my daughter .in honesty I didn’t really notice much difference in sound quality at the class. I am still finding voices and speech really tricky .I have also still been needing volume 4 and have tried different programmes to see if this is any better but none seem to make much difference, very minimal difference between them all so far.

After the class I took my daughter to the park .While pushing my daughter on the swings .I didn’t hear another  adult in the park, I think a nan of one lf the little girls  talking to me

I jumped out of my skin when I turned round to see a lady was standing directly next to me (left hand side) my better side(used to say good ear but I don’t feel this is accurate any longer)  talking to me and I hadn’t noticed her approach (I last saw her over the other side of the park by the roundabout) nor had I heard her talking ,let alone to me. I felt really embarrassed and had to ask her to repeat twice ,even then I  still didn’t fully know what she was saying embarrassed to ask her to repeat again I simply  just said OK and smiled. All I managed to get was Something about a dog… I think ?! 

This evening I had Sign choir rejersal and I really struggled to hear Carol our choir leader despite standing near to the front and central to her.I had to ask Debbie who was next to me what was being said numerous times-who then repeated in a way I could lipread and or  signed it to me for me to understand and know what was being asked or what song we were now doing . I struggled as always to hear the music and lyrics 

At one point Carol  wanted us to do part of a song along as she believed we knew it more than we thought, saying how we didn’t need her and so she  played one of the songs at a random part and wanted us to show her.

I didn’t know what part of the song we were on and  I had to look to people next to  and around me to gage where we were .I massively messed up and  signed it wrong because I couldn’t follow the lyrics nor did I have Carol to follow. I laughed it off but actually it does upset me as i like to hope I know the songs or at least better than I showed I did and again it’s the whole what is everyone else thinking when I’m watching them instead or constantly messing up.

Driving home from choir my ear felt itchy and uncomfortable  but I  continued to persevere through it until bedtime.

I know I haven’t mentioned the BAHA I’ve tried it twice and neither time have I so far managed more than maybe a minute without having to get it off, it’s still very ,very,very overwhelming. I tried to wear out my front door on day 1. I have two keys on my front door key chain the two keys and my keyring crashed together and it was so so intense and loud I hated it and threw my keys down in a jerk reaction .the sound went right through me ,it was far too loud I genuinely thought a car window was smashing or something. Very intense. Safe to say the BAHA had to come off as even when I turned it down it was still too much and overbearing .

I didn’t feel it was a safe idea to wear it when i already knew I would be extra sensitive to sound and I I feel I could jump out of my skin like this walking down the communal stairs or across roads with my young daughter.

The second time I attempted to wear it was day 3 . I waited until I pulled up at the charity event and popped it on. Its incredibly difficult to turn it on while it’s attached to the abutment though compared to my previous model, most likely because this one is so much smaller.Tunring it on before attaching isn’t an option as the feedback “the scream” as I call it because its so so loud whistling/screeching sound is not pleasant (even with the old model) .eventually i got it on but had to massively, massively reduce the volume on it abd also on my hearing aid to -4 ,which then felt pointless wearing the hearing aid as I then wasn’t getting any sound that side.

Once in the hall I had both on for a few minutes, however the noise of children running around screaming excitedly was too much ,as well as this the BAHA was now starting to irritate and pull at my abutment site ,it was time to remove it. Part way through the event when I realised how quiet everything was I did debate putting it back on but felt that would would too disruptive to do so I didn’t. Since then I haven’t been able to wear the BAHA again this week as the site has become swollen and begun to bleed again.

I will try again next week but honestly I’m not expecting much from it and won’t be pushing or forcing myself to wear it ,seeing as it’s being removed once scans are complete and results back. That said I will if my abutment allows try to attempt again as I’m not a quitter and giving in without a fight.

Hearing For The First Time again..

Published July 22, 2022 by goshgurl95

It’s been a while since I last had a hospital appointment. The last one was while I was pregnant and was pregnancy related (My little one decided to keep everyone on their toes with her growth and was suspected of medically being my double).

The last time I had an appointment related to my ears/ hearing was a good 2.5 years ago now (due to various reasons such as COVID, pregnancy, giving birth, becoming a mummy, getting lost in the system) At my last appointment I saw my consultant Mr Joseph ,the dressing  of my newly revised BAHA had come off the week previously and I had said how I felt it wasn’t right, it was tender and sensitive to the touch , was reassured all was fine and sent home until the following week, where it was confirmed I was infact correct as the site was infected and skin was encroaching upon it.. since then its never been right still..if anything possibly worse in some ways.

I would say it’s been a long 2.5 years. I’ve given up the fight of chasing the hospital on numerous occasions. Felt really low and down about everything and the lack of care and support ,been reduced to tears from everything, but actually it’s been a long 10 years now of battles with the hospital and trying to make my BAHA right.

.chasing the hospital now took more time than ever with a newborn and housework to contend with and I was just being ignored what was the point?! I was angry and frustrated that I was having to fight so much and so hard for something that everyone else takes for granted. I was fed up of being fobbed off with antibiotics and creams which I had become immune to due to how often they’ve been prescribed over the years.

For those of you who aren’t aware or are new here I had BAHA surgery in 2014   as I was born with Microtia , I have always struggled as far back as I can remember with my hearing

A few months ago my fighting spirit returned and I was ready to fight back again and get it sorted,not for myself but for my daughter.

My daughter deserves a mummy who isn’t in constant pain and discomfort everyday with aching  ,throbbing,  bleeding, weeping, being sensitive to the slightest movement or touch. My daughter deserves her mummy at 100% and quite frankly I’m not and haven’t been for a good 10 years.

Finally today was the big day. Oh my was it a big day .The first time I’ve ever left my baby -my daughter, I know she’s technically a toddler but still she’s my baby. I was so nervous and felt sick to the pit of my stomach leaving her ,I knew she was in safe hands with my mum and kept reminding myself I was doing this for my daughter and she would be absolutely fine . I had Two appointments totalling almost 2 hours in total.. the first with a consultant and the second with audiology.

I had fire and nerves in my belly but I knew it was time, it was now or never to sort this and get answers. I couldn’t put this off any longer.

Upon arriving at the hospital due to Covid I was greeted at the hospital entrance by security who were in masks ..brilliant.. ( I totally get and respect why it’s just incredibly hard when your deaf) Luckily I had as always pre prepared what I would say  ,almost on auto pilot mode . “Hi I have an appointment at 11.10” I say.  I’m allowed in and am watched sanitising my hands before joining a queue.  I’m asked by the same security man to take my mask off and wear a medical grade one which is provided .

Absolutely fine no issue ,I simply ask for another so I can adapt it so it’s wearable for me. He seems confused I explain I cannot wear ear looped masks as I only have one ear (my reconstructed ear has retracted back flat against my head so it’s not possible) .

The security guard then goes to cut an ear loop off of the initial mask ,I stop him as this would be a waste and try again to explain I need 2 masks he doesn’t understand my request .

Eventually very confused he asks you want another one? Yes please I say and using tongs he hands me the second one. I quickly take off the one I’m already wearing and pull an earloop off of one of the medical grade ones and begin looping it through both of the other ear loops to tie behind my ears . He eventually upon seeing Me lift mine off over my head and realising how the straps are different
realises what I’ve been saying and tells me “oh no, no don’t worry you can wear your one” .  Are you sure I ask I’m more than happy to use your ones I just need to adjust it and make it accessible. He allows me to wear my own one..result! As I don’t essentially want to waste 2 masks over the course of the day if it can be avoided.

I continue to queue until I’m waved forward by a lady on reception. I again autopilot and say my name and time of appointment ,I’m as close as I physically can be to the desk which has a thick screen partition,  there is then a desk and then the receptionist in a mask she tells me which floor to go to .I cannot hear her so I just head to the lift and check the mychart app and head to floor 1 as it states.

I arrive at floor 1 and am asked to sanitise my hands. I then present at reception and again struggle to hear the receptionist I eventually after him shouting rather loudly (after I repeatedly told him I’m deaf and I couldn’t hear him) I’m told I’m on the wrong floor and the clinic is now being held on floor 5. He puts his whole hand up against the screen partition.

I go up another 4 floors and again am asked to sanitise my hands and present at reception on this floor.

Finally!! Someone who realises this is a specalist ENT Hospital. The receptionist instinctively pulls her mask down and looks directly at me when speaking so I can lip read her. I’m told to take a seat in zone B (she attempted to sign this but ive no idea what she actually was signing as it wasn’t the BSL B ,but hey at least she tried more than anyone else had done so far) .

I ensure I’m sitting in prime location outside of the door, so I’m more likely to hear my name ,especially as I’m unfamiliar with who I’m seeing today so I don’t know who to be expecting to call me through or know their voice/ speech pattern. (If it’s someone I’ve seen before it makes it easier as I know who to look out for, I know their speech and accent etc and they also know me as well so know who they’re looking for if I don’t hear them)

As always they’re not running to time I sit reading my book waiting, every so often checking the time on my phone so I know roughly when to expect someone to call me. At first I look its 10 mins after scheduled time, then 20 and eventually 30 minutes later but nobody calling me yet ..

I see a male staff member walking around at the other end of the corridor . He keeps coming out and disappearing. I’m not sure what he’s doing nobody seems to be looking or responding so he can’t be looking for a patient .I go back to my book.

He then 10 minutes later ,after appearing numerous times at the other end of the corridor appears out of the door directly in front of me “Bethan, Bethan Harvey ,Is Bethan Harvey here” yes that’s me I say getting up . He smiles under his mask and laughs I’ve been calling you”.. whoops appears he was looking for someone after all ….

Oh .. have you I’m really sorry I didn’t hear you ,I was told to sit here I say    .(Strange that I didn’t hear him given he was calling me at the other end of the corridor , he’s in a mask ..oh..and I’m deaf , I’m also without aids, but we won’t mention that)

Anyway he seems nice and hopefully someone I can have a bit of light hearted laugher with , we walk up the corridor, he is walking in front of me and I think he’s talking to me but ive no idea what he’s saying if he even is talking to me .We go through a door opposite …

zone A. …Not zone B.. Zone A. .. I’m led into a room and I’m indicated to take a seat (notice indicated not asked ..I think he may realise I’m deaf now)

He introduces himself as one of the doctors,  Joseph Manjaly and explains how my previous consultant Mr Joseph  has retired now and that he has taken over all of Mr Joseph’s BAHA patients so is now taking over my care as my consultant (strange coincidence how the surname of my previous consultant is my new ones first name)

Mr Joseph was lovely but I can’t lie I was relieved to hear (no pun intended) that he’s retired as I just feel he’s fobbed me off for years now with creams and antibiotics,wasn’t taken seriously and he hadn’t helped with pushing audiology and I’m no further forward.

Mr Manjaly asks how  I’m getting on with the BAHA .. ohhh dear here we go.. just how long exactly do we have?!

I explained everything from infections, rejection, countless appointments, backwards and forwards at least once a month every month for 18 months before revision was finally an option , since revision surgery 2.5 years ago I’ve been left with constant pain and sensitivity around the whole area surrounding my abutment ,behind my right reconstructed ear, and partially down my neck ( Bet he wished he hadn’t asked) .

Mr Manjaly notes all this down before asking what has caused my deafness and actually called it deafness not hearing loss (another win) I explain that I have Microtia to my right and I also have bilateral sensorineural hearing loss. I explain that I don’t know why, but its always been put down to my left ear being under extra pressure to be both my ears for So long. Mr Manjaly questions this saying he doesn’t believe this to be true ,if I’ve never had hearing to my right ,my brain,body and left ear isn’t knowing to know what it’s missing so how would it therfore compensate for something its never known..Very interesting point. Mr Manjaly goes onto asking about my other medical conditions .(poor man how much time does he have ,Especially as it was initially a 20 minute appointment that essentially I’m 30 mins late for)

Mr Manjaly then turns to me and says do you feel you’ve reached a point you just want the BAHA removed  .yes!!! Absolutely I’ve had enough of it ,it’s not serving any purpose it’s been sat unused for years now I explain. (Love that he said it not me). He explains if I want it removed he can do that and will quite happily do it but it’ll mean another operation. I’m completely fine by this, anyone who knows me will know I just take operations in my stride it’s normal and a common-ish occourance in my life.

Mr Manjaly explains that they will only remove the external part not the internal structure as it would involve drilling .I’m really not fussed just take the whole lot out as far as I’m concerned. Drilling or no drilling take the lot out ,then I know its fully gone.

I’m asked to lay down on the bed so he can take a look at my BAHA site..I’d already expected it to be looked at so had my hair tied up in a mum bun ( how it is the majority of the time these days how time has changed .it used to be a rarity me having my hair up) 

I don’t lay on the bed but instead sit on it,I’m asked to lay down and get comfy. Note to self expect to lay on a bed and do not ..I repeat do NOT wear a short dress. I mean it wasn’t mega short I don’t do short dresses (everything’s on the knee minimum) but dresses ride up .I mean it was longer at the back but oh my it was interesting trying not to flash my knickers! 

He takes a close look (at my BAHA that is not my knickers) with a big light and a form of pen torch and feels around it and tells me it all looks fine, no skin encroaching I explain about the pain and sensitivity and how it’s sore and uncomfortable with him even ever so lightly touching it , he was barely touching it. It’s insane how sensitive it is. I explain even brushing and tying my hair up is ridiculously sensitive and tender to do

He apologises but it’s fine it needs to be done and honestly I’m used to the pain now its been there everyday since I came round from the revision surgery 2.5 years ago, and I like to think my pain threshold is pretty high anyway given previous surgeries / treatments I’ve been through and giving birth with no pain relief .if I can give birth without pain relief which is apparently the equivalent of breaking 7 bones at the same time I can get through anything .

Today is a good day pain wise so although it’s not comfortable it’s not unbearable, he then asks if he can look in my left ear to see if he can see anything identifiable going on there …brilliant …awkward shuffle/ wriggle to not show my knickers ( don’t get me wrong it’s great because this is the first time since the age of 16 my left ear has been taken seriously and got a look in)

 He pulls a otoscope over on a trolley and looks into my left ear and then asks me to roll my head away from him so he can get a good look. All looks good which is great. Mr Manjaly does however explain how he does think wearing a hearing aid for my left would be a good idea. I can’t lie Mr  Manjaly asking to look in my left ear took me by surprise as I hadn’t expected this and Mr Joseph never had any dealing with my left ear ,only ever my right so this was very welcomed to finally have a consultant overseeing all of my care again I’ve not had this since Neil Bulstrode at GOSH.

Mr Manjaly was very willing to sort out a date for removal then and there (music to my deaf ears) Huge sigh of relief I’m liking him more and more by the second. I feel listened to,understood, he seems friendly and down to earth and nothing seems to be a fight.Mr Manjaly explains to me there are still options for me and how it may be possible for me to have a magnetic implant instead and asks what my thoughts and feelings are on this .

I was actually going to ask about this possibility today ..have I said I like him yet?! I explained how yes this is something I’ve thought about and looked at and have heard (no pun intended) they’re supposed to be much better, less risk, no infections or rejection. He explains this is true however of course from a surgical point, like anything they have their own risks , and tells me that the magnetic ones aren’t as powerful as the abutment implants and that it won’t necessarily help with the pain I’m experiencing if it’s not related to the abutment ,however it is something to still consider and not to worry we still have options – honestly beyond BAHA or magnetic versions I didn’t think there were any options ,so this is great to know.

Mr Manjaly tells me that they haven’t done any scans on me recently. I correct him .They haven’t ever done any scans – last scans I had were maxiliofacial and dental Xrays and medical illustration at GOSH . He was surprised by this, as apparently I should’ve had a CT and an MRI before being given the go ahead for BAHA to check my skullbone is compatible with the abutment..brilliant …so could turn out I’ve had 10+ years of pain and problems that could have been prevented 10yrs ago … He asked in that case if I would be OK with having scans done so they can firstly have a better idea of what’s going structurally and hearing wise with both ears , so they have some on file and so we know what is and isn’t an option going forward. Overall all of this will help with the bigger picture of whats going on with my hearing and will hopefully explain why I have the daily pain and sensitivity I’ve been experiencing.

He goes onto say that perhaps it would be best to wait until scans have been done before we book a date for the BAHA removal ,because if the scan shows its possible for me to have a magnetic implant (if this is something I want) they can do both the removal and place the new magnetic one at the same time so essentially a two for the price of 1.

I am However told I don’t have to do this .I don’t have to do anything I don’t want to ,and asks if I have any other ideas or feel strongly about another route, if so that is the route we will go .. if I haven’t already said I like this consultant I’m saying it now, if I have I’m saying saying again! The last time I had a great consultant that listened, was down to earth , puts the patient first ,understands and puts themselves in the patients shoes or at least tries to understand what it’s like was Neil Bulstrode. I mean nobody will ever top Neil Bulstrode.Ever. Neil Bulstrode has already set that bar sky high . Mr Manjaly is definitely a good one to have even if he will never be Neil Bulstrode.

Mr Manjaly thinks about everything ice told him and that we have discussed before saying “hmm your a hard case you don’t do things the easy way but it’s OK we have options” .I reply yes I’ve been told this and no I definitely don’t do things the easy way ,there’s no fun in that someone has to keep you on your toes, to which he smiles and laughs..

I mean someone’s got to change things up a bit and be different can’t have doctors and consultants getting bored now can I 😉

We leave it with Mr Manjaly sorting out scans and a follow up appointment before we schedule a date for further surgery and with him speaking to audiology about fitting me with a hearing aid for my left this afternoon as he feels this will be of real benefit , a good starting point and will help in the mean time until we have the scans back.

Now this appointment is complete I have two hours to kill until my next one.

After what seems a very long 2 hours wandering bookshops ,Street food stalls and a farmers market it’s time to head back.

The same mask patrol security guard is on the door and allows me straight through in my own mask and i sanitise my hands and wait to be waved over by a receptionist. I struggle to hear this one more than earlier as other receptionists are talking to other patients so it takes a while but I get there eventually (always the main thing) and she puts her full hand up indicating to goto level 5, this is great but honestly it would be so helpful if they signed even basic things hello, welcome ,appointment time what, name what, alphabet and numbers would be a huge help. Especially given its a specialist hospital for ENT and dental.

I head back up to floor 5 where I had been only 2 hours earlier, sanitise my hands and approach reception I’m greeted by the same receptionist as I was earlier ,she instinctively again drops her mask and when I give my name she says you’re already checked in, I did it already didn’t I? I explain yes she had but this was for a second appointment Clue should have been last time was 11am and its now 1.30pm .. I mean I know clinics rarely run to time but 2.5 hrs?! She attempts to sign holding her full hand up in a C shape to indicate to go to zone C…After this morning I consider whether I should actually sit in zone B .I go to C anyway though.

Again this clinic isn’t running to time but that’s fine it gives me time to check in on my daughter again and sit reading some more of my book . About 15 minutes past my appointment time I’m called through, (well I assume its me as there’s no one else sitting in zone C ) I missed the name in her accent and mask.

I follow her through to a small room where another member of staff is sitting ,thankfully this lady who I’m told is also one of the audiologists Farida ,I believe her name is or something similar to this (it definitely started fa and had a D in it..I think..) thankfully she’s wearing a clear visor instead of a mask so I can actually lip read her.

The first member of staff I’ve seen wearing one ! I focus more so on her as I find her much easier to hear and follow. Anne ( the audiologist that called me through who the appointment is actually scheduled with isn’t so easy to follow in her medical grade mask and has an accent (don’t ask me what it is because I’m useless with accents) not helped by the fact she’s sitting completely on the other side of the room to me not directly in front of me)

Anne asks me what happened at this mornings appointment with Mr Manjaly so I fill her in on how the BAHA abutment is being removed with possibility of looking at magnetic Implant and how Manjaly wants scans done and said he was going speaking to you about everything and tell how he would tell you what my options are for you to discuss with me.

I’m asked more about my pain and issues I’ve had with the BAHA and so i go through all the history again, Anne explains to me that Mr Manjaly has requested that they fit me with a hearing aid today how do I feel about that? Yes that’s fine I say, he had discussed this with me earlier ,I explain I have no issue with this and how I had one when I was 16. I’m then asked why I stopped using it ,to which i explain Mr Joseph had told me to stop using it as it wasn’t needed as the BAHA would talk to both cochlear.

Ohh okay Anne replies although she doesn’t seem sure on this. Anne asks if I suffer with ear infections ,and whether I’ve had ear surgery in the past . I explain I’ve had reconstruction and a couple of emergency surgeries on my right ear due to mcirotia and of course the BAHA but nothing to my left

Any discharge from your ear she asks? No I reply what about the right no there’s no opening it’s completely sealed off I reply. Anne asks Farida to check my ears ,which is fine although I only had them checked 2.5 hours ago but I’m not complaining

Farida checks I’m OK with her checking my ears ,yup no issue whatsoever and gently places the otoscope into my left ear and takes a look ,all looks good and no wax build up,she then goes across to my right to take a look quickly realises she can’t look into my ear this side but has a look at my reconstructed ear anyway with the light and around my BAHA abutment which Anne also joins her for my right.

Anne jokes how im lucky having two for the price of one today having herself and Farida taking care of me.

Anne then explains she would like to do some hearing tests as my last hearing tests were in 2013 ,am I OK for this to happen and then asks Fardia to run the hearing tests.

The first hearing test I do is the standard one of sitting with headphones on and pressing the button when a sound is heard. Both Farida and Anne set this test up and both place the headphones on me

While doing this test a couple of times Farida waves to get my attention and indicates I need to press the button hard ( I wasn’t pressing it as I hadn’t heard anything ) once this test is complete on both ears , the headphones are swapped for a different set and I’m told I will hear background noise such as rushing sounds, but only to press the button when I hear the beeps. I always struggle with this one ,it’s incredibly difficult for me. Once complete on my left ear the headphones are swapped the other way around and the rushing is now playing on the other side ..doesn’t really make much difference for me it’s equally as hard.

Without realising my left leg and hand are shaking during this test and I Begin feeling panic rushing over me ,where I know I’m doing badly with it and the pure focus on trying to hear the beeps but the rushing sounds are so loud is overwhelming. (I’m absolutely fine though).

Once this test finishes I’m asked if am alright ,yeah I’m all good I reply ,are you sure I’m asked again, yes all good. Farida then asks if I feel OK to continue with the tests which I’m absolutely fine about so next up is a different set of headphones much much thinner this time and instead sit on my bone with a sound cancelling pair of headphones on and I’m told this test is a Bone conduction test ,how I may feel the sounds/vibrations but I’m only to press the button when I actually hear the sounds.

This wasn’t too bad to do on my left. Once the test is finished on the left it is then swapped over so that it is now testing my bone conduction on the right . At first I can’t hear or feel anything after a while I can feel the sounds but it’s then incredibly difficult to tell my brain I’m feeling it not hearing it as my brain automatically starts thinking it can hear the sound because I know I can feel it.

Once this is test is done the headphones and bone conduction testing kit is all removed and I’m told I can turn my chair back the other way now .

Anne and Farida debate whether to do my least favourite of the hearing tests now or after they’ve fitted my hearing aid. It’s decided they’ll fit my left hearing aid first . Farida leaves the room to go to another floor to get one telling me she will be back in a few minutes and to stay put.. okay.. I’m not going anywhere.

While Farida leaves the room to find me a hearing aid I’m left alone in the room, Anne has also left the room .

Anne then returns and asks how I got on with the hearing tests and flicks through my previous results and todays .I’m told my right ear as expected is profound (it always has been so that’s nothing new as I can’t hear anything without a BAHA) My left has as I suspected deteriorated and is now moderate more than it is mild . Honestly this doesn’t surprise me I’ve known for a while as I can’t hear my front door ,I can’t hear the doorbell, rely on subtitles on the tv , I can’t hear my daughter when she’s in a different room, car radio is on full volume before I can just about hear it,I can’t hear the satnav even on full volume and probably many other things too.

Anne asks how I would feel about wearing a BAHA on my right ,as they need me to do so for one of the tests. I say I’ll give it a good try but can’t promise I’ll be able to keep it on due to the pain it causes ,she disappears off to find one. Meanwhile Farida has returned and asks me what colour hearing aid I would like (result do i get pick of all colours like kids do?? I’m definitely up for a colourful one ,deafness shouldn’t be hidden and should be celebrated) Turns out I don’t. I have the choice of adult boring simple colours silver ,black ,beige or brown. I opt for silver and she disappears off to get one.

Anne then returns and asks if im OK with a dark brown BAHA , yupp I’m not fussed any colour will do. She begins unboxing it and tells me this is a new model.. its the BAHA 6 max.. where is it?! Its miniature compared to my BAHA 4 which I thought was tiny, the 6 max makes the 4 look like a brick.

Anne asks if its OK for her to check my abutment over and tells me that it’s got a lot of debris and overgrown dead skin around it.. all signs of an infection or issue with the BAHA (conflicting information from this morning) …I’m handed the BAHA 6 max to pop onto my abutment. It’s so small it’s pretty fiddly to do , I think I’ve got it on but its straight off the moment I move my hand away. I give it another attempt or two before Anne steps in and puts it on for me.

It’s on . I can’t lie it’s not the most comfortable but it’s not unbearable where I just want to rip it off like I usually would. Anne says she’s tempted to do the tests and programme it all up while we wait for Farida even though she had agreed we would do the Hearing aid first,but she decides seeing as it’s on and neither of us are sure how long I’ll be able to tolerate it for we get straight on with it.

The test is pretty straightforward I just have to wear the BAHA while sound is played through the computer and I have to say yes everytime I can hear something

Anne switched the BAHA on ,how does it sound I’m asked.i don’t know I say, feeling a little emotional and overwhelmed. It’s scary to go from nothing to full access to sound . It all just sounds so different but I’m not sure its a good different. I didn’t realise how much I’d been missing and how quiet things really are for me it’s huge. It’s very overwhelming not like this videos you see trending .

Anne reassures me it’s OK to feel this way and gives me a few minutes to try adjust to it. As it could all be where its been so long since i last wore one and reasjsuting. Anne waits a few minutes and we sit in silence, before she speaks again,asking how it sounds I reply again I don’t know It’s different. very different .I don’t know how or how to describe it. Its just different. Loud and different.

Anne turns the sound down a bit to see if that helps it does slightly I think but mot by much its still very overwhelming and different ,sound overload I guess. I calm down a bit ,and manage a coupoe of minutes more. t comes off I can’t. I just can’t do it. Its starting to irritate the skin and its just too overwhelming. Anne tells me this is fine and it’s all OK. I never expected it to be like that ,I feel disappointed and frustrated in myself. I’ve never expirenced a BAHA or anything for that matter being that overwhelming before.

Farida came back into the room while the BAHA testing was being completed and Anne had explained she had taken over and why , she was fine about it. Farida then showed me my new BTE hearing aid and showed me all the controls of how to work it.

Farida then placed a thin flexible wire into my left ear to measure how long the hearing aid tubing needed to be, I was told it may tickle but honestly it didn’t ,she placed it in until it apparently made a beeping to tell her its was where it needed to be,she then removed it and found a hearing aid tubing of this length and attached it to my hearing aid and then placed the aid into my ear to make sure sure all fit OK and felt comfortable. Farida then got me tp removed it and put it back in to ensure I knew how to do it and was happy getting it into correct positioning.

Once Farida was satisfied that I had put it in properly and had pushed the earpiece in far enough as it goes much further than my previous one did from memory. Farida then placed a wire into my ear and a neck support type band around my shoulders to programme the hearing aid up to my required level. I was asked to look straight ahead at a speaker and told it would play someone talking but I didn’t need to do anything or respond to it. Thank goodness I didn’t because I couldn’t understand any of it,I’m not even sure it was in English and they were talking very ,very fast.

Once this was done Farida then programmed my hearing aid on the computer system and removed the neckband and wires and turned on my hearing aid for the first time. I was asked if I could hear her and how everything sounded . Instantly I could hear her voice and it was so much more crisp and clearer ,it made realise how quiet and difficult voices have been unaided me to hear. With the hearing aid off I could just about make out voices I could hear them but they wasn’t clear. Loudness I didn’t really notice much difference it all sounded about the same. Farida told me she would now clap her hands softly just to check it wasn’t too loud or overbearing .it wasn’t it sounded about the same as it always

Farida then finished setting up my hearing aid and adding all the different programmes and settings to it . Anne and Fairda then debated whether to do my most dreaded hearing test now or whether to leave it until my next appointment. Part of me was sitting there hoping they would say we would do it next time because it’s honestly my least favourite one to do and I just hate it as its the only test in my eyes that I can get wrong…. The speech recognition test…

Honestly speech recognition test is not the one. I know it has to be done and why, but it’s just my least favourite as the other tests OK yes you can fail them but I don’t feel you can get them wrong.

I mean technically no you can’t get speech recognition wrong you hear what you hear same with the other tests .

Speech recognition test is when the audiologist will say different random words and you have to either repeat the word back or respond to what has been said so for example they may say duck and I would then be expected to repeat the word duck ,whereas if they said what did you have for breakfast? I would be expected to respond to this.

I just feel so self conscious doing this one and I think it feels more like it can be wrong ,as your not allowed to reply I don’t know you have to give an answer

I could repeat back a totally different word or respond with something that doesn’t make any sense which would be embarrassing , it’s also the only human interaction one. OK they wouldn’t laugh if I got it wrong but it’s that thought of will I be laughed at will I be humiliated. Of course I know they won’t. it’s their job and they of course need to know what I can and can’t hear speech wise as it obviously impacts on my speech, how I speak and pronounce words, how you make and keep conversations, how you make relationships and interact, and its how My daughter will learn to speak too so it is hugely important .

They decide not to do this test today ,deciding they will leave it until next time to allow me time to get used to my hearing aid and retrain my brain to hear sounds again..this is a partly a relief but equally I feel it should have been done today without my aids and then with the hearing aid as well, and then repeat the test again with different words next time to see if there’s any improvement with using the hearing aid once used to hopefully a little more adjusted to it.

Anne tells me that both the hearing aid and BAHA have apps that I can download because they’re both Bluetooth and can control the volume and settings remotely from my phone instead of having to do it on the actual aid/ asked if I want this written down but say its OK as I’ll remember and do ut on the way home

Anne and Farida then sit debating when they next want to see me and joy long to give it for me to try the hearing aid and BAHA out (I agreed to take the BAHA home and attempt to try it but made no promises I mean I’m getting rid of the abutment anyway it’s just a case of when not if) Anne then turns to me and asks when I want to come back..ermm What do you usually suggest as a recommended time frame I ssk (I’ve no idea on these things)

I’m told typically for someone whose new to BAHA or a hearing aid its a week or Two however because I’ve had a BAHA before so I know what the sound is like its just readjusting and retraining my brain and the fact I’ve got two devices she tells me she recommends we give it at least a month, then settles on 4-6 weeks time. Part of me feels like this is a long time but equally I know it’ll fly by.

That’s then it for the day and time to head home to my baby to await a whole array of appointments scans ,follow up with Mr Manjaly and a follow up with audiology. I leave on a positive note feeling that thing’s are starting to happen and ,be looked into and taken seriously. I might not be where I need to be yet but I’ll get there.

Baby Ears

Published July 18, 2022 by goshgurl95

This has been a long time coming and I’ve debated on and off whether to share and what to share. Here I am so I’m sharing…

you may remember me saying when I was pregnant with my daughter that there was concerns from my local hospital that my little one may have some of my medical conditions. Upon referrals to Great Ormond Street Hospital (GOSH) and University College Hospital London (UCLH) for further scans and genetics, it didn’t seem as though my little one would have any of my medical issues depsite being of a higher chance.

I was however told that my daughter and any future children I have are of a 75% increased chance of having learning disabilities, this is absolutely fine in my eyes, any child can have a learning disability it doesn’t make them any less than.

At my daughters 12 month check with the health visitor my daughter was highlighted as scoring low for communication. This was down to her not pointing or being able to communicate what she wanted such as gesturing , taking my hand pulling me to what she wanted ,and because she was learning words then dropped them ,some times saying then for a day or two other times saying them for a week and then didn’t say them again.

I was worried but equally not as I felt she was at an unfair disadvantage seeing as she had literally only just turned 11 months a couple days before. I equally was concerned because what if she was actually deaf and it hadn’t been picked up?, what if there were hearing issues that haven’t been highlighted earlier on? if there was a problem ,or what if I was the problem? I’m registered deaf and so I panicked is it me ? Is she picking up my bad speech habits? Is it because I’m a single lone parent and the only parent in her life?

The health visitor gave me a sheet of communication activities to do with my daughter ( I already did everything on the list so it wasn’t the most helpful) it said things like talk to and sing with baby …isn’t that what you do anyway??

I’ve always spoken to my daughter, talked about what I’m doing ,where I’m going (mummy’s going to cook dinner now, mummy’s washing the vegetables, mummy’s going to get the post , look nice orange carrots for dinner, pointing out things we see on our walks look can you see the bird, the dog is out for his walk too, and so on…

singing I’ve done ever since she was still just a bump I’ve sung to her, i sing nursery rhymes with the actions and signs, sing to the radio in the car, sing to soothe and calm her. (Poor kid) as my singing is awful..

Other recommendations were baby groups and interacting with other children….. we’ve always been super active story and rhyme time sessions up to twice a week at our local library, baby Sensory classes, new mum and baby groups , baby British Sign Language (BSL) classes (tinytalk) , mum and tot groups twice weekly, buggy walks with other mummy’s and little ones, soft play trips, farm trips, visits to the duck pond, zoo trips and so on all either on a weekly or very regular basis . All from 4 weeks old.

We typically are only really in all day once or twice a week

Days we don’t have plans we typically walk, see the ducks, trips to the park, soft play, visit the library. I try to keep as active as possible. I fail to see what else I’m supposed to fit in?

The health visitor made a referral for my daughter to have a hearing test incase any of my deafness is genetic ( had already explained she doesn’t have microtia and how it’s believed the deterioration in my left is from being both ears for So long) We actually should’ve had a hearing test when she was a few weeks old as she only just passed newborn hearing screening in the last split second.something I’ve been told would happen two weeks later, 6 weeks of age,8 weeks of age, couple months old and so on.. yet here we are nearly 15 months later

Nearly 3 weeks ago now we finally had that hearing test.. I was asked by the audiologist about my deafness I instinctively went into the whole “I was born without my right ear and therfore fully deaf that side” I shocked when the audiologist stopped interrupting me and asked do you have Microtia? ..

Omg yes!!.. its not often I come across anyone ,medical professional or not that knows and understands Microtia .especially so local too..hooray!! Hence why I don’t say I have microtia until after I’ve explained as otherwise I get “what’s that” “never heard of that” “I’ve never come across that before” “I’ll Google it ” (yes this has really happened) although now I’m typing this why don’t I?! It would make more sense “I have microtia it means ….”

The audiologist went on to ask if there is any family history of hearing problems besides myself .. yes my side had constant ear infections growing up and had numerous sets of grommets growing up I say.. “oh that’s just childhood hearing problems though I mean actual hearing problems” ermm yeah that is an “actual hearing/ ear problem” ,childhood or not its still relevant, last time I checked my daughter was a child..well technically speaking she’s a toddler (not sure how thats happened) but still..

I wanted to say yes my dad is deaf in one ear but he was sitting there and would have denied it ,and who needs family arguments..

She goes onto asking more about my hearing, what type of loss I have, Is it linked to any other conditions or syndromes, have I had any ear operations, do i suffer with ear infections, what hospitals have I I under and had the surgeries ,how old was I….I thought this was my daughters appointment?!

On a serious note I don’t mind answering these questions and will happily answer anything and discuss my complexity of health and medical conditions with whoever wants to know.

I’m then asked if my daughter can and will sit at a little desk set out with toys..she might I reply, as I’m unsure if she will as she’s going through a bit of a clingy/ separation anxiety phase at the moment. I’m told she has to sit there for the test to be conducted.. I sit her on the little wooden chair and sit on the floor just to the side of her, I’m told I’m not allowed to and that I have to sit where I was initially sitting and fhat another member of staff will sit opposite and play with her.

I’m reluctant to do this as I’m not sure she will be happy to remain seated once I move ,as I say she’s going through a separation anxiety clingy phase and needs to know where I am and be inches away from me if that.

I move back to where I was initially sitting and my daughter instantly turns round looking for me and tries to get down to get to me ,when she realises she can’t push the chair out from under fhe table she extends her arms for me wanting to be picked up. I know she has to sit there so try talking to her and distracting her with the toys on the table .. this works then she extends a hand wanting me to hold it for reassurance, I’m told I’m not allowed to do this…

Thankfully my daughter is quickly distracted by the lady and the toys. They explain that the first test will be a range of sounds played out loud through a speaker and if she looks then a box to the side of her with an animal will light up and the animal will move.

They do a few demo ones and are praising and encouraging her to look before the sounds are then introduced, instinctively when she has looked and its lit up I’ve also offered her praise “well done” “clever girl” “good girl” that sort of thing (which the audiologist and lady playing with her are both doing as is my dad) “mum can you please be quiet your distracting her leave the distractions to us”

I sat focusing on my daughter nowhere else in the room.soley watching her,on a few occasions I didn’t hear the sound but noticed out of the corner of my eye the box light up and its instinct you just look don’t you,especially when not expecting something ” mum please stop reacting to the boxes your distracting her” considering I’m sat behind her she shouldn’t know if I’m looking at the boxes, my shoe,my phone or where I’m looking ,it’s not as though I’m sitting there saying “look” “can you see the penguin” or whatever ..

I I genuinely half expected them to tell me to go and sit outside like a naughty child sent out of the classroom.

My daughter is pretty clever (if i do say so myself) she’s very observant she will intently watch and then do whatever it is she’s just seen you do, whether it’s blow on hot food, put the correct shape through the shape sorter etc. After a few times of the boxes lighting up she sat there every so often in between sounds glancing at the box in anticipation as she knew they would light up.

I’m not sure really how they can determine from this whether she can hear or not, how do they know she heard the sounds and it wasn’t just instinctively looking,or it had caught the corner of her eye like it had me when I had most definitely not heard the sound. I wonder how is this an accurate representation and testing?

After this test the audiologist has a look in both of her ears too which I’m told I’m not to hold her and instead they ask my dad to hold her?! I’m her mum why can’t I hold my own child??

Her ears both looked clear and absolutely fine which is great to know . The audiologist then decides that they will redo the newborn hearing test due to her only just in the last split second passing the test on her left ear. By this time she’s broke free from my dad and has belined for me .I’m holding my daughter for this test. She wants me and quite frankly I want to hold ,support and reassure my daughter, I’m her mother its my instinct and my job to do as such.

The test only takes a few minutes but tested each ear individually, naturally my daughter didn’t understand what was happening, either the earbuds fell out where she wriggled or on one or two occasions she pulled them out without any of us spotting. She naturally being a young child made some noise while this test was happening and a strange lady essentially was holding something in her ears ,standing very close to her .she didn’t cry but did babble and chat away

It seemed to take forever so my gut instinct said OK she’s not passed it she’s deaf that’s cool and begins processing the question of OK so what’s the next step? does she need a hearing aid? Does she need speech and language therapy to help her communication?

Instead I’m eventually told, “because she’s making lots of noise it’s interfering with the machine ,so it won’t give a pass reading” (I’m suspicious at this point she’s only babbled and said hiya,I wouldn’t exactly class this as loads of noise) the audiologist goes onto saying “but don’t worry I think she’s absolutely fine and there’s no problem because she’s babbling and trying to speak so we will just say she’s passed and see her in a years time”

Are you for real I’ve waited just say of 15 months to essentially be told they don’t know if my daughter is deaf or not… 15 months later and I’m still none the wiser?! Surely the machines should take into consideration that newborn babies (who the test is typically for), babies ,toddlers and young children do make noise and or cry.

Part of the reason for the referral was because of how low she scored for communication and yet this was totally and utterly disregarded. I remind them of this and before I have a chance my dad has piped up and said but she’s dropping words and currently only has about 2 words but they’re not consistent or used in context as you saw during the test you just did. If she said all the words she has ever said before dropping them she would have a repertoire of about 15 words.

The audiologist stops and pauses before saying ..oh… followed by another long pause before going onto say “Well she’s trying to talk in her own way, she’s babbling which is a great sign that she wants to talk and is trying to communicate”.

It would be safe to say I’ve requested not to have this particular audiologist again next time, that I’ve complained about the lack of interest and disregard for family history besides my own which she couldn’t know or write enough about, the disregard for why the initial referral was even made ( famkly history and the low communication)

Thankfully our new health visitor (don’t know what happened to our original one but she was awful anyway) was equally not impressed with the service or results provided and has said she definitely needs retesting again and much sooner than the 1 year mark and before the typical standard hearing test all children have aged 2 although she actually told me 2 years 10 months is more accurate. Our new health visitor is pushing for a retesting to happen much earlier than either of these two marker points,as in her words you “you need to know so she can be supported correctly and get access to any help she needs sooner than later”

Significant Sight

Published June 23, 2022 by goshgurl95

Yesterday Morning I had my routine two yearly eye test today .. a day I dread every two years .I hate it. I’m not scared of having my eyes tested or anything like that. No . For me it’s just a pain in the backside appointment as the funny glasses used in the tests never sit on my microtia reconstructed ear ..resulting in a lot of fiddling and tweaking from the optometrist who then calls for back up so two optometrists then battle to figure out and suss a way to get them on me..  if.. they are successful at doing so I usually end up with one of the lenses too far up my face or too low down , they’re crazy tight and digging in or they fall off after a minute or two maximum 

When I’m wearing my hearing aid and BAHA (never in the last 4 years or more now I’ll explain more at later date on this) there’s them to contend with too with squealing feedback from one or both of them becoming unhappy..its chaotic  . and that’s before the test has even begun.. 

9 times out of 10 i end up with a sympathetic smile from the optometrist ( hate that I don’t need sympathy or want it) and  end up just holding the testing glasses on the right because it’s just too much faff..

It’s then how up close and personal they get ..ermm..yes… hello I can see you 👋 (I know its essential and I’ve no issue with that it’s just a little off putting ) .. I’m then thinking do I smell, does my breath stink,I hope I blended my makeup well enough ,silly things really. I mean all the surgeries and treatments I’ve been through and I’m more than happy for that bit not an eye test.. weird I know..

I’ve always been to the same opticians and always have informed them of my ear and deafness but it doesn’t make it any less complex I’m still forever having to explain it to them and they’ll still try and wrangle their contraptions onto my face and eyes.. 

Todays appointment turned out to be anything but routine… firstly once I arrived ( hadn’t even got in the door  at this point as they book ypu in outside now) I’m told my test was taking place upstairs. 

Not an issue except they don’t have a lift and my 14 month old was fast asleep in the pram ,library books in the pram basket. No way I can physically leave the pram down stairs (their initial suggestion)  nor any way of physically getting it up the stairs alone either..

My pre test checks were completed downstairs but yuck was the  chin rests soaked with  cleaning gel . I understand that because of COVID things have to be cleaned much more throughly and they would usually be wiped down but literally I lifted my chin off and it was  all dripping and running down my chin.. gross… I’ll await the eczema flare up tomorrow morning..

Then the challenge of getting my daughter upstairs for the actual test as she was still sound asleep..  two burly male opticians had to carry my daughters pram up stairs ,14 month old, heavy changing bag ,library books and all

.the stairs are windy and narrow but yet she stayed asleep thank you to those two amazing men! 👏 who says we don’t need men?!

A few minutes later she woke  all happy ,smiley, happy to look at a book perfect .. 

of course my appointment is then running late and she got bored waiting so has begun arching her back, moaning ,making lots of noise  and wants to get out the pram ..brilliant… we’re off to  a good start 

About 15/20 minutes later I’m called through by the Optometrist..”ooh I don’t think the pram will fit,  hang on I’ll get rid of this chair ..erm that’s not really made any difference..ermm  it’s OK we will just  have to leave the door open”   she tells me. 

 I go through with the pram to the teeny tiny room door wide open ,pram half hanging out of said  door ,the three of us squashed in the tiny room.  Everyone else waiting  can hear everything going on ,absolutely no privacy. Okay cool whatever I’m not fussed ,would be nice to have privacy but let’s be real I’ve gone through childbirth and have a toddler …there is no privacy or dignity  anymore anyway. ..(why they couldn’t have moved me downstairs or at least to one of the bigger rooms upstairs that sat unoccupied  I don’t know) 

I was expecting to sit as usual on the big green medical looking chair and look at the letter chart, colour number things on the wall as usual with the test glasses.. nope none of that.  I literally just sat at a teeny tiny desk on a little swivel computer type chair with the optician sitting directly opposite with her computer ever so slightly at the side. I mean  yes it was rather on the squashed/cosy side but it was great for me on a hearing level,especially as they still have to wear masks ( an absolute nightmare for me being deaf especially in this sort of setting where you can’t really look at them to lipreading and changes to lighting) at least she was a lot  closer to me so it made it a bit easier.

Instead of sitting looking at a chart I was told to put my chin on a chin rest and rest my forehead against the head rest ,similar to the pre sight test and look through that at a  chart of letters in a projection type box. Little strange can’t say I’ve had that before..

She conducts the test with my current glasses on.. can you read that bottom line? Read it..

. I can’t even see it ,it’s so tiny … she switches the slide.. now? No I can see what looks like tiny dots  certainly no letters and I can’t read them.. hmm OK she replies and pauses. I think your eyes may have changed, are you sure you haven’t had any headaches .yes I reply I’ve had no headaches.. 


( I don’t recall having been able to read that bottom line for many years now ,usually the 3rd line is the lowest i can see ,I’m certain my last eye test they didn’t even ask about the bottom line) 

She does a few more letter tests slightly bigger (not much they’re still very tiny) can you read Any letters on here .. “I  can’t see any of the bottom line I tell her  but I can just about make out a C  on the second line” ..she switches the screen any on here? Yes I can just about make out an O on the second line but I can’t work out the others i tell her… at least I think that’s what the two letters are anyway…

She stops the test… pauses. Turns to me and says OK … your eyes have deteriorated quite significantly.  

OK i say partly having expected it anyway before the test and from her reactions so far into the test.

I was failing this test .. and miserably so ..

She asked me to take my glasses off and conducted the rest of the test without them asking if I can see the numbers clearer on the red or green..erm they’re both equal I reply.

OK she says try this one..erm the same they’re pretty equal i say. Hmm OK try this one.

Erm the red but only ever so slightly there’s not much in it.. and this one she prompts. Green I say confidently as it is ever so much more sharper. 

The optometrist does a couple more of these colour number tests before moving on to show me a picture of a circle made of smaller balls and asks if 1 or 2 is clearer.. 1, the second is blurry i reply, she does another of these erm 1 again I say the second one is really out of focus and the colour is stretching (like ink has run) I’m Essentially seeing double nearly.. but 1 wasn’t very sharp either..  She does another they’re both the same no difference i say. Ok and this one she prompts  the 2nd one is clearer i reply.

OK she concludes and then asks me to look at slide 1 and slide 2 with just my left eye and then does the same with my right ,which eye can you see better with she asks .. ermmm not sure (isn’t this there job to know?) .. she repeats it again I’m still not really sure which I can see clearer out of

She tries a third time erm.. the right eye but only ever so slightly i say as this feels sharper to me but there isn’t a huge difference that I can tell.. 

OK she concludes ,so your eyes have deteriorated quite significantly, more so than I would have expected or would expect to see in 2 years .OK I say starting to wonder if I should be worrying a bit more now.. 

She begins typing everything into her computer and doing some admin from her findings. While my daughter has the hump about being ignored an wants to get out of her pram.

Yes she concludes ,that’s quite some drop from your current prescription and your sure you haven’t been to any other opticians and been given a different prescription since your last one here ? She asks .Yes I only come here I tell her I haven’t had any other tests..hmm OK so this current one we have on file is your most up to date? Yes that’s correct I tell her.

You don’t drive do you?  she asks,yes I drive I reply but not very often I walk where I can, especially since having having daughter I tell her. She pauses and then says to me how she’s not sure its legal for me to be driving with my current prescription , she checks against the computer and tells me I’m only just  legal to drive .barely..

 Wow.. that was a huge shock and recommended I don’t drive until i get my new glasses unless it’s essential … I wasn’t expecting that at all ,pretty scary actually as I’ve been driving around for who knows how long not knowing there’s a problem with my vision. 

Concerned at how rapid a drop it is and that I’ve had no headaches she asked to conduct further tests to check my eyes and their health. Worried my eyes were not as healthy as perhaps  we thought or believed. 

Chin back on the chin rest and head against the head rest .I was asked to look directly ahead while she shone a light into each eye one at a time, getting me to look up, look left,look right and look down .thankfully both eyes appear to be healthy so that was a huge relief. Can’t lie that was a hold my breath moment. 

I was told  how both my eyes look healthy so rules out a lot of problems and is obviously a very good and reassuring sign. She went on to say she believes it’s been caused from too much computer use and to minimise my usage.

I explained I don’t use computers nor do I own one,the only piece of technology I own and use is my phone ( I do have a Tablet but never use it) and I’m rarely on my phone as I’m busy chasing a toddler about or at baby classes. 

The only time I really use my phone is when my daughter is napping or when she’s in bed otherwise it’s just a quick glance every so often.

 TV wise I don’t really watch any to be honest if I pop it on in thr daytime for my daughter it’s while I’m doing housework or cooking dinner,  the only time I do watch it is occasionally in the evenings when my daughter is in bed. So it’s definitely not technology usage related.

I querried if it was hearing loss related where I’m deaf and my ears don’t work properly ,were my eyes overcompensating for it ? I know this to have been true with my ears, as its why my left has developed a loss due to taking on the role of both of my ears for so long.

I wondered because being deaf is much more visual having to be more aware and alert of your surroundings, listening fatigue, reading subtitles and captions, reading lips and body language whether my eyes are overcompensating for my hearing loss and are deteriorating quicker for this reason.

She didn’t really respond to this. She went on to explain that due to the significant change to my prescription I would need much stronger glasses ,but would get help with this being a single mum and on benefits (not ashamed to admit this) 

 However she wouldn’t give me the full prescription all at once as she said it will come as too much shock to my eyes and body  causing me to be sick and get migranes .

 instead she would only be giving me three quarters of my prescription and told me  she wants to see me again in 6 months for another eye test  and increase my prescription a little bit more ,slowly increasing until I eventually get up to my full prescription to give my eyes a chance to catch up .

The plan is if when I go back in 6 months they’ve further deteriorated I will be given a whole new prescription for even stronger glasses and start again in slowly increasing the strength over time.

 Can’t lie that’s pretty scary I’ve never not been given the full prescription, nor had to be seen 6 monthly instead of every 2 years. 

Essentially I’m going to need 4 pairs of glasses in total to get me up to my  current prescription ,  if were increasing a little at a time . 

We’re looking at December being my next appointment , new glasses and increased prescription,  then if we follow this pattern if there are no other changes along the way this time next year will  be another check, new glasses and another increase and December next year will be pair 4 hopefully taking me to my full prescription.  By which time it’ll be near enough time for my next 2 year  check .. 

The  next part is always the other part I dread…

…picking out new glasses…

 I dread this as I can never find any that sit right on me because of my microtia . Yes I’ve had reconstruction and I’m really happy with it but glasses are still a battle and sit lopsided .

it’s hard trying to find some that aren’t as noticeably lopsided(,this is an absolute battle ).

 Once I do manage to . I usually don’t like them  or they don’t suit my face .the other thing I then have to contend with is my hearing aid and BAHA..

 Will the arms of my glasses sit right with them, does it irritate them ?, do my hearing aid and BAHA irritate the glasses? , do my hearing aid and BAHA like the glasses ( yes this is a thing) squealing ,squaking feedback whether the glasses are touching the arms of the glasses or not. Not too thick ,not too thin. Does it all feel too heavy. 

I know  I’m not using either at the moment but I aim to be soon ( big appointment in London in  the pipeline for next month) so this had to be a huge consideration in picking new frames too. Best bit is because I drive I need prescription sunglasses too so double the fun picking out two separate frames.. I finally chose some I’m happy with and collect them next week,how long I’ll like them before I decide I don’t like them the bet is on. Oh well only 6 months of having them until I can do it all again. 

Thanks to some amazing people who were able to translate the prescription for me it doesn’t seem to be too bad a prescription. I am mildly nearsighted and have an astigmatism meaning my eyes are rugby ball shaped as opposed to football shaped and light focuses on more than one part of my eye.

It’s a long road ahead  but as always I’ll get there. Positivity is key negativity and feeling down isn’t going to achieve or get me anywhere. 

Detox Daddy Day

Published June 22, 2022 by goshgurl95

Sunday was hard… (Father’s Day). . It was a really triggering and a hard day. I can’t lie I struggled and a lot of tears were shed.

Waking up and seeing all of my daughters little friends photos of them with their daddies and all the outpour of love ,along with my friends children’s posts too .it hurt.. absolutely yes celebrate those daddies they deserve to be .its not my friends or my daughters friends fault I found it triggering and absolutely post away.

I guess it’s like a grief, like I was in grieving mode.Seeing all her little friends unplanned happy grins looking into their daddies eyes,holding their hands,splashing about on holiday in the pool, off out on their adventures. The daddies looking at their little ones that look of love and adoration for their little people (more so those with little girls that father daughter look hurt more) .

That should have been me posting photos of my daughter with her dad, yet its the one and only thing in this world I cannot give to her.

Sunday Brought back lots of painful memories of the life I imagined ,I very much imagined us being a family of 3 me ,David and my beautiful baby. But that wasn’t to be. He chose to walk.. I took the day completely off of social media I couldn’t face seeing it

I’m fine about being a single lone parent. I’ve done it right from the moment I found out I was pregnant that doesn’t hurt or upset me anymore. The break down of mine and David’s relationship doesn’t bother or hurt me.

What hurts is that break down of a relationship for my daughter, she doesn’t and never will have her dad in her life.

she won’t have her dad to chase off boyfriends and give her a hard time aboutboysand staying out late, she won’t have her dad give her away and walk her down the aisle. She will never have that father daughter dance at her wedding.

In time maybe I will meet someone ( for now at least I’m sworn off men and don’t want another relationship) who takes on that role, but they still will never truly be dad biologically by blood.

This was my daughters second fathers day, last year was OK . I thought it would get easier from now until she’s much older . it doesn’t . it gets harder and it’ll be harder still each year.

My daughter is very fortunate to have an amazing grandad in my dad who she has wrapped around her little fingers, absolutely adores her ,spoils,loves and cherishes her and thinks the world of her. He really truly is our hero ,as incredible as he is .he will never be daddy.

Before I know it my daughter will ask questions i can’t Answer and begin to question things… coming home from nursery and school telling me”we made cards for daddy today but whose my daddy?” , asking my friends (insert names) have daddies where’s my daddy ,why doesn’t my daddy love me ,why doesn’t my dad want me.

these are questions that I can’t answer I don’t know why he doesn’t love or want her. I never will understand that. 💔

This isn’t a feel sorry for me post or an I’m lonely post ,because its far from that, I’m happy not sorry and have so much love for my daughter ,my little best’s purely to highlight its OK to hurt,it’s OK to not be OK, it’s OK to grieve a life you set out or expected.

Deaf awareness week 2022-Day 7

Published June 22, 2022 by goshgurl95

I am Deaf!
I am deaf🦻🏽. I am not broken!
I am deaf🦻🏽. I am not mute!
I am deaf🦻🏽. I am not dumb!
I am deaf🦻🏽. I am not impaired!
I am deaf🦻🏽. I am not a “poor thing!”
I am deaf🦻🏽. I am not disabled!
I am deaf🦻🏽. I am not looking for sympathy!
I am deaf🦻🏽. I am not ashamed!
I am deaf🦻🏽. I have my own culture!
I am deaf🦻🏽. I have my own language!
I am deaf🦻🏽. My hands talk!
I am deaf🦻🏽. My eyes hear!
I am deaf🦻🏽. I am so much more than you think!
I am deaf🦻🏽. I ask for respect ✊🏽!
I am deaf🦻🏽. I have special capabilities!
I am deaf🦻🏽. I am proud to be me!
I am deaf🦻🏽. I have dreams and
aspirations just like you!
I am deaf🦻🏽. I laugh, I love and I live victoriously!
I am deaf🦻🏽. I am not a statistic!

Yes I am very proud to be Deaf ,myself and of who I am. ❤️

Deaf Awareness week 2022 – Day 6- Resources and Media

Published May 10, 2022 by goshgurl95

I can’t believe we’re on day 6 of Deaf awareness week already! Today I can’t lie I struggled to think of a topic area to discuss, but I hope this will serve well.

As you know I was born deaf that said I’ve always and still do struggle with my deaf identity and where I truly belong or fit because I do still have some natural hearing left, so I guess am I in the hearing community? But equally I am deaf however I don’t fully fit there either I’m essentially in the middle although I would say I’m more leaning towards deaf community, that in itself is a huge thing and you essentially have to be accepted into deaf community.

Anyway getting back on track I have been fortunate enough to have expirienced a lot over the last almost 27 years (wow this sounds scary) in terms of Deaf evolution and  I’m fortunate enough to work with a couple of deaf charities.

Growing up there wasn’t really anyone deaf to look up to for inspiration or to pave the way. There wasn’t anything regularly on TV talking about deafness, I certaintly never saw anyone deaf on the TV either, no books, nothing in the papers or magazines.. nothing. It was very lonely and isolating growing up deaf in a hearing world not knowing anybody else like me. Its fair to say there wasn’t the awareness or knowledge of deafness  that there is today.

Ive compared mine and my daughters health red books in terms of what it states at each developmental milestone a baby should be doing. Particularly the hearing aspects. My daughters says things such as, can hear sounds, responds to sounds, responds to their name and turns in the direction of sound. Mine asks about whether a baby can hear sounds and reacts but then states underneath a deaf child will not do this and will make monotonous sounds/tones, the child will sound deaf…

Well its fair to say thank goodness we’ve moved on from those times because this really isn’t true at all. I’ve always been a chatterbox and being deaf hasn’t ever got in the way of that. Yet I had a 110% loss out of 200% at birth (no hearing in right ear being 100% loss  and 10% in my left). Living with 90% hearing in total which over the years has deteriorated further.

Its sad reading comments such as those printed in my red book because they are very untrue stigmas and I imagine would be something that would make parents fear the worst and yet deafness isn’t a scary thing..

Growing up feeling invisible, alone and isolated was something I absolutely hated and knew was something I never wanted others to expirience yet I had no idea what to do. I couldn’t exactly do anything could I, I was vulnerable, insecure, anxious, lacking self esteem and self belief.

Eventually while at college I decided I needed to do something because as far as I could tell nobody else was, or if they were I hadn’t come across it. I set up this blog with the aim of helping one other person who  would hopefully come across it and feel reassured that they are not alone, failing that just as away of offloading getting everything off my chest, out my head and down in paper somewhere.

I never dreamed nor expected it to reach people all over the world, how it has honestly I’ve no idea and still baffles me to this day. Some how my local newspaper picked up on my blog and featured it which was huge and so exciting, I didn’t expect that ever. I never expected it to go any further than that and yet some how this happened :

I’m still not quite sure how or why this has happened. Not including a few radio interviews and being interviewed on BBC news, insane..

This shouldn’t really be happening as deafness and difference should just be a given and accepted, but Unfortunately it isn’t. we have come a long way but we still have a very, very long way to go we’re still not fully at that point of difference being celebrated and deafness just being normal which is so frustrating and sad to see in this day and age.

That said it is incredible to be able to share my story, I don’t do this because I’m confident, or full of myself or anything like that. I do it purely to raise awareness and for that little girl I once was alone, shy, struggling and isolated growing up in a world that just didn’t cater to her or celebrate her, that little girl is still out there somewhere today in the form of another child. this isn’t OK. Things have to change. It cannot go on as it has been, the next generation deserves better than myself and others have had to endure and expirience.Deaf people deserve to be treated as equal and to have their voices heard.

Today everything is so easily accessible with a click of a button which isn’t always great but  it has its advantages in circumstances such as raising awareness and giving others a voice and a platform that perhaps wouldn’t otherwise. I know I personally wouldn’t have a voice if it wasn’t for technology and social media. My voice has come from this blog . Finally there seems to slowly but surely be an increase in awareness, its still not great but its a huge step forward from when I was little.

On the most recent series of BBC Strictly Come Dancing, the BBC made history by having the first ever deaf contestant taking part, Rose Ayling-Ellis. Exciting yes but equally awful and sad. why  in 2021 was this the first time deaf people were represented anywhere? , let alone somewhere such as the BBC, It’s awful and sad to think but this for many deaf people including myself was the first ever time they had seen a deaf person, someone like them portrayed and represented in the media. Rose has become a beacon of light, a glimmer of hope, inspiration and a role model for many providing them with a voice.

Since winning Strictly Come Dancing (spoiler Alert if you didn’t already know this, where have you been?!) there has been a huge influx of interest in British Sign Language (BSL) and so much awareness of the deaf community, there are no words for this.

In Essex alone (where I’m from) searches for British Sign Language (BSL) courses rocketed up by 400%, something BBC radio wanted to interview me about shortly after the news hit. As I said at the time to BBC Radio Essex it is  incredible to see people wanting to learn more about our world, hopefully to become more aware and inclusive of us. Rose has proved to young deaf children you can truly do anything you want, the only thing deaf people cannot do is hear besides this the world very much is our oyster.

It’s so beautiful and powerful to see deafness now being portrayed in such a positive way, it really does help to shape the future for the next generation of deaf children and hopefully make their day to day lives so much simpler going forward with awareness, understanding, empathy, knowledge and empowerment .

Growing up, especially so when I was very little (were talking pre school aged) British sign language was very much a taboo thing and was shunned as was deafness or any kind of difference really. It was looked down upon. This is one of the reasons my parents never learnt or taught me British Sign Language . very recently  huge changes have begun to emerge and has seen the BSL Act Now  campaign pass not only its 1st reading, not only its 2nd reading, not even its 3rd reading making huge history in itself, it has been years since this last happened but it went all way and passed in the house of Lords meaning it is awaiting signing of by the Queen and then BSL will become a legally  recognised language and will be respected and protected as such along with gaelic and Latin. This will give BSL more rights and power, breaking down barriers and enabling deaf people to be able to have their language recognised and truly protected, respected and treated as equal for the first ever time. This hopefully will encourage and inspire others to sign.

Keeping on with this particular topic, growing up my parents were given the option of me attending mainstream school or a special needs school. My parents debated which option would be best for me and which would give me the best opportunities and the best start in life. It was at the time very much viewed that deafness was a special need and that deaf people were stupid and dumb. I’m certainly not the brightest bulb but I wouldn’t say my interlect  or academics (or lack of) has anything to do with my deafness. I mean no i can’t hear very well and I do miss information etc but you have to think of it in context I mean is every hearing person  the next Einstein? smart and top of their class? Of course not so why would every deaf person be bottom of their class? Thick and stupid? All because they can’t hear? There is NOTHING. Nothing. Thick or stupid about being deaf. it’s not like we’re choosing to be deaf or there’s anything we can do about it. In someways I would actually say deaf people are smarter were the ones who adapt, find new ways of communicating, become more visual and aware of the world around us and our surroundings that’s not all bad is it? we all have different strengths and weaknesses and that is absolutely OK.

My parents were very much told abd led to  believe that if I was to go to special school I wouldn’t be able to ever work because unfortunately at that time this was the outlook and view the world had of those who were different. My parents opted for me to attend mainstream school I can’t lie and say it was easy because it absolutely wasn’t without its struggles but I got there and that is the main thing.

During infant school I had amazing help and support in the form of my class teachers, it was actually my reception class teacher who first noticed I struggled when working in large groups and with locating sounds, it was this lovely teacher Mrs Childs who ensured she got me the help and support I needed to be able to thrive and without her I don’t think my infant school years would be the amazing ones I look back on. I felt so included in all aspects of school life, was happy and confident and felt like everyone else .

Unfortunately after infant school I had very little to no support at school, despite my parents regularly telling my teachers I couldn’t hear and explaining how and where I struggled the most because I absolutely didn’t advocate for myself back then. They just didn’t get it. All I was told was to sit at the front and listen, and how I had to get used to it, often being told off when I asked for repetition or  being told I should have been listening . The teachers never understood why I was so quiet and didn’t ask questions or say anything.Honestly i wanted to but I didn’t want to be told off or told I was thick or stupidcor laughed at by my peers because I needed yet more clarification again. It was exhausting and draining.

Again when I went to college I had little to no support despite being told there was support avaliable to me, besides being offered an interpreter in my first week (I didn’t know BSL at this point so it wasn’t an option) I just had “get on with it and learn to live with it” by this point i had learnt the world wasn’t designed for people like myself and nobody wanted to help, if I wanted to anything I would have to do it or find away of doing it myself, for myself.

ThThankfully today there is so much more support for deaf children, more mainstream schools now have resource bases (formerly known as hearing impaired units another huge change that’s recently come about) that support deaf children to reach their full potential using sign language, and making the adaptations required for those students to achieve. The children also get to mix with other deaf children as well as their hearing peers. Sign language is promoted and used widely throughout the school encouraging the hearing children to support the deaf, a, lot have their own school sign choirs too which is absolutely amazing.

Another huge change since I was little is the introduction and use of Teachers of the Deaf (ToDs) is a fully qualified teacher who has undertaken further training and qualifications to teach deaf children there role is to provide support to the deaf child, their family and also to the school and anyone else involved with a child’s education. A ToD is able to perform assessments such as monitoring a child’s hearing, reading hearing test results, monitoring and testing acoustics of the classroom /areas of the school used by the deaf child, helping and monitoring hearing levels with hearing aids and ensuring the child has everything they need to access education.

Another change is hearing technology such as sound fields that can be installed and used in the classroom, it works similar to that of a personal listening device making the classroom sounds amplified for those who need access to it. It works by amplifying the voice of the person speaking in the classroom using a microphone and can move around the room from student to student or teacher to student.

Radio aids are a similar system that can also be used, this involves a wire loop being worn by the deaf child with a receiver connected directly to the hearing aid or cochlear implants and a transmitter (microphone) which is worn by the teacher. This system enables sound from the teacher to go directly to the deaf child. Amplifying the teacher or the desirable sound and excluding other background sounds.

There is so much more media, technology and literature than when I was growing up. It still has an awful long way to go but it’s defintely improving. For example when I was growing up there wasn’t any books about deafness or of any deaf main characters, they just didn’t exist. I would’ve loved it if they did as I always have been a bookworm, but they just didn’t.

Today however there is such a wide range of books on a wide diversity of topics from different households and families, disabilities, race and so on and deafness definitely has not been excluded from this. There are a whole range of books for children of different ages about deafness more commonly that I’ve come across seems to be from the ages of 3-12 years maybe depending on reading stage, but this is a huge increase, amazon stock quite a few, National Deaf Children’s Society (NDCS) Have some stocked on their website too, microtia UK have a few different books on their website available helping to raise awareness of Microtia, similarities and difference, Bone anchored Hearing aids (BAHA),l

Toys in the form of dolls are also now available for both girls and boys celebrating deafness. Toy like ne and other companies have made dolls that are custom made with hearing aids, cochlear implants, BAHA and can be customised to match the child’s aids and even on the same side as the child. Toy Like Me also make toys and dolls from dollies, barbies, action men, Teddy bears and soft toys to look like their owner Build a Bear have brought out accessories that can be purchased at an additional cost including hearing aids, glasses in a few different style frames and colours, wheelchairs, crutches, and assistant dog vests. I believe they do walking sticks and service dogs for the build a bear to actually physically hold on its lead/harness but couldn’t find these om their website upon checking besides a vest that can be bought to put on the actual build a Bear.

You do not have to be deaf to use these resources what a way to teach your hearing child or any child for that matter about difference and teaching them how to celebrate everyone’s difference and be inclusive of all.

This week I have been really impressed with Cbeebies everyday they have had children sending in clips of them signing and been showing these throughout the day, bedtime stories have all been interpreted (i can’t comment on the lunchtime one as I rarely have the TV on during the day) whereas typically I only ever really see interpreted services of a weekend regularly. Cbeebies have also been very much talking about the 5 senses and how everyone is different, which is great. To end deaf awareness week Rose Ayling Ellis signed Can Bears Ski? On bedtime story. They have also made a permanent change to their website so that there is now a section where you can access all programmes with sign language services avaliable. I would mention other programmes that have been on this week but to be honest none have really massively stood out and are unfortunately only a one off for this week, although that said Born Deaf raised hearing was very relatable to my personal expiriences growing up. Its a shame that after this week all of these programmes are done and forgotten about for another year.

Thanks to the Internet, evolving technology and charities there are so many resources out there to help promote deaf awareness and difference, literature such as books, articles coming out more and more across social media, tv interviews, magazines, papers and other media sources, things to help a child come to terms with diagnosis and understanding what’s happening such as child friendly approaches, websites designed specifically for children and teens to learn about their condition for themselves, charities to reach out to, and so so much more more there is still a long way to go but these are all baby steps in the right directionbelow

Below are the books and resources I currently have my daughter who is hearing to help explain to her why my ears don’t work, why I’m deaf and what that means but more than abything that it’s ok that mummy is different and how to be aware, help and support others and jist help her tp fully accept who I as her mum am,we will continue to grow our collection of resources and once she’s too old for these pass them along to charity or someone else who they could help and benefit, any child can have exposure to difference and learn about the diversity or everyone, you don’t have to be going through it yourself to be open, understanding, learn or be aware and inclusive. Education starts at home.

Deaf Awareness Week 2022 – Day 5 – communication

Published May 8, 2022 by goshgurl95

There are many reasons as to why someone may be deaf whether it’s from birth, childhood or later on in life as an adult. The main two types of hearing loss are conductive and sensorineural.

Like any hearing person every deaf person is different, (something a lot of hearing people find hard to believe) . Deaf people are all unique and we are all unique in how we choose to communicate.

Some deaf people believe it or not communicate by speaking and listening.. I know who would’ve thought a deaf person can hear and speak, mind blowing i can hear you (no pun intended) cry, but yes this is very much true. This is true because there are many deaf people, including myself who have some degree of hearing so this is entirely possible.. Not necessarily always essy but possible. There is also hearing technology such as hearing loops and radio aids as a couple of examples that can help in assisting with this.

Lip reading can also be used by watching somebody’s lip patterns and movements including movements of the tongue as a person  speaks, this really does help in understanding speech, that said deaf people are no experts when it comes to lip reading. It doesn’t give us all the answers, although it certaintly does help in reducing the amount of guesswork. Lip reading allows roughly around 30% of speech to be understood. As I explained in day 2 there’s a lot of factors that go into a successful lip read, this includes lighting not too bright, not too dark, position of the person are they facing you or turning away? Are their lips and mouths covered? Do they have a beard or moustache?

British Sign Language. Something every deaf person uses of course! Thid isn’t true not every deaf person knows or chooses to communicate by sign language, but it is very much a communication method you could come across a deaf person using. BSL is used by around 87,000 people in the UK. It is very different to makaton as BSL is its own language (recently legally recognised as such) whereas makaton is not it is a communication aide, BSL also has its own structure, words, grammar and slang varying upon regional dialect and accent, signs are not always the same as the makaton sign would be . whereas makaton follows English word order and signs are the same wherever you go there is no accent or dialect variation

Sign Supported English. Sign Supported English is another form of communication that is and can be used by deaf people, there is a difference between SSE and BSL. Although both use exactly the same signs, SSE follows the English word order grammatically and is  often used alongside speech, BSL does not use speech. An example would be

“Polly has a blue car”. In SSE this would be signed Polly has a blue car, in BSL it would be signed car, blue, Polly, have.

“Every morning I wake up at 8am” in SSE this would be signed every morning I wake up at 8am. In BSL it would be signed 8am morning, everyday, me, wake up.

Another form of communication you may come across is signed English also known as SE. Signed English is different still from BSL and SSE as although it uses the same sign and like SSE follows the English word order grammatically, every word has to be signed with Signed English as well as using spoken language whereas SSE does not have to sign every word and can just sign the key important parts.

Fingerspelling is used by those who only know a little bit of sign language and is a great way of beginning to sign an making initial conversation with a deaf adult or a deaf child who uses BSL. Fingerspelling is also used by deaf people for the use of names including peoples names, place names, road names. For words that there isn’t a sign for and It can also be used as clarification by a deaf person or if someone is struggling to understand a sign.

Makaton, I briefly touched on Makaton earlier. It is often believed to be the same as BSL but it isn’t, the two are completely different. I often hear people say “oooh I know sign I watch Mr Tumble he signs”, Mr Tumble /Justin Fletcher is not signing, it’s not BSL he uses Makaton which is a communication aide although it does borrow some BSL signs not all signs are the same. Makaton is used with spoken English or song lyric at all times and is used as speech is developing and emerging, quite often only the key word is signed rather than every word. It can also be used by children and adults with communication difficulties. The other big difference is that Makaton is universal it doesn’t matter what country you go to it is exactly the same, there are no variations or accents, it also has a written language which BSL does not.

Hands on signing is a form of communication that is often used by deaf people who also have visual impairments more commonly referred to as deafblind. This method of signing involves being very tactile through touch the child or adult who is deadblind placing their hands over those of the person who is signing this is so that they are able to follow what has been communicated.

Baby signing can be used by both hearing and deaf babies, it involves using BSL signs that are very simplified down and used in an SSE order using spoken language so that the baby is able to begin to make connections between the item, word. and the sign often through a method called see it, say it, sign it, you or your little one see something and point it out say what it is for example a duck and then follow up with the sign duck.. Baby sign is used to help break down communication barriers and frustrations before a baby is able to speak as a way of communicating and expressing themselves.

Personally for me I use a mixture of these primarily using speaking and listening with a combination of lipreading due to be raised in a hearing family and schools with no deaf provisions, however I do use BSL when with others who sign and find it much easier to follow and joon in conversation either using BSL or SSE depending on each individual situation, I am qualified to a level 2 standard in both BSL and Makaton, having used Makaton for one of my jobs, i can’t say Makaton is for me or something I actively promote but it worked well for those I needed to use it with through work. I currently also jse baby sign with my little one who

There are many different technologies and communication aids and tools avaliable now too including speech to text apps, livesign apps,. When coming across a deaf person please don’t ever be afraid to approach them and make conversation, we don’t bite. Never assume how they want to communicate always ask and they will tell you what there preferences are, always adapt and be inclusive whether they want you to write things down, remove a face mask, sign, speak or use an app please always do what you can to be inclusive of all.

Deaf Awareness Week 2022 Day 4- Dinner Table Syndrome

Published May 6, 2022 by goshgurl95

by Rose Ayling-ellis and Allontheboard

Experiencing the ‘DINNER TABLE SYNDROME’ as a deaf person
can cause feelings of frustration,
Trying to become numb to it may make you feel slightly better,
But it doesn’t improve the situation,
Pretending to understand what’s going on and laughing when others are laughing too,
Because you want to be involved in the conversation,
The sound of silence sounds deafening
to someone feeling invisible and secluded in social isolation,
Its a relief when someone at the dinner table quielty notices and makes an effort towards you with their communication,
Some deaf people lip read and some use sign language only,
Everyone is different,
Ask what’s best for them so words are not lost in translation.
Dont brush a deaf person aside,
If they ask you to repeat, repeat calmly with patience and the same intonation,
It can be exhausting trying to keep up in a crowd,
Just because someone is deaf they shouldn’t feel desolation,
Lets work together to bring everyone together with awareness,
A better understanding and education,
Deaf people shouldnt just be seen as being deaf,
They have feelings, thoughts, opinions and emotions like everyone else,
We can learn so much from each other with open minds,
kindness and consideration.