my ears

I want my audiograms. All of them. Since I was 6. Until Now. Please?

That's apparently too much to ask. I wrote and applied for my records, and my boss agreed to pay the fee as my work are very generous with anything health related. Then she mislaid the form, cos that's what she's like.

So I popped in to the PALS office (patient advice and liaison service) and explained this, and they helped me fill in a new form. I know how to fill in a form, but they had someone sit down with me. I said that I wanted ALL my records from the premature baby unit, and ALL my records from audiology.

What did I get...50 pages of baby records scribble.

No audiograms.

I emailed someone at PALS who says very sorry, very busy, will get them soon.

I get a grand total of 2 audiograms. 2! One from an assessment I had at uni to get a notetaker. Another older one. The hearing test I had in June isn't on there. The free field test I had isn't. A whole life reduced to 2 audiograms!

I emailed and said very nice but where's the rest.

The reply was...that's all we can find..you're welcome to come and see them on the computer!

I wanted to reply, but I had a bad time of things lately with our beloved Monty cat passing away, and now it feels too late. I just want what I paid for and asked for, but don't know how to ask for it.

An old post: aided free field hearing test

I meant to post this the other week:

What a day! I've been so busy recently with work, and had a hell of a long day. I was up late trying to finish fixing a laptop for work, then had to get up early to shower and go to audiology before work. My dad dropped me off as the appointment was 8.45 and the first bus leaves at 9.16, but it was before he went to work so I was there at 7.45.

So I'm sat in audiology, half asleep, with still-wet hair, lugging 2 laptops and my lunch (I use my mac at work- well, the boss and I split the cost, plus I had the other one I was trying to fix- so heavy!).

Several people look at me. Then at 8.15 the audiologist, Hayley (a very nice lady) walks in and says it'll take a while as the test is in the paediatric unit and they needed to set up- I said fine as I'm early but was dying for a glass of water!

So I lug all my stuff down there at 8.45. I explain that things like the phone ringing, cutlery clanking, some talking, sounds unbearably loud and harsh and uncomfortable- she says this is common and she agrees that it's probably recruitment.

For the test I had to sit under a microphone in an enclosed room with a perspex window. She said she would play sounds and I should tell her when I can hear them, and raise my hand when they get so loud that it's really uncomfortable and I want her to stop. She starts, and it goes 'beeepbloopbeep', increasing through frequency and volume- I nod after each one, but as usual they're at the same intervals so I know I couldn't hear some as there were gaps. I nod after each one, and pull faces when it gets loud. The low ones were loud but tolerable. The high ones were a lot quieter but very uncomfortable...she said I was just about tolerating the whole frequency.

As they got higher it caused interference, my hearing aids immediately went skreeeeeee and it was like a pneumatic drill inside my head, or fingernails down a chalkboard. She said I nearly fell off my chair!

We discovered that I am hearing aided - from my rough recollection as I couldn't have printouts (that old chestnut- I'm still waiting on my records...) at about 30, 20, 15, 20, 30, 60 across the frequencies (I think I've forgotten one but that's the gist, 4khz was 60). She said that 30 was acceptable for an adult. Unfortunately at 4khz my uncomfortable loudness level was 85 (and for some reason 65 was horrid and made me swear loudly) so there's not a lot of room to put sounds there. With the other freqs it was about 80-90db.

We were discussing this when her colleague Lucy came in, and asked if we were ok. Hayley said 'she knows things' and carried on talking about recruitment and compression. I felt quite happy that what I've learned is useful :-)

She turned down the gain a little (I assume) in the mids, so it was a little bit lower (I can't remember if the values before are before or after she did this) and we repeated the test. I got 5db or so more tolerance in the lows/mids. She explained that most useful speech information is in the middle, and high speech sounds are softer, plus I'd need them to be approx 60db to hear them, so I'm not getting much benefit in that area. She said that as I didn't wear analogues for a long time, my brain's used to things the way they are, and digitals are much more help with my type of loss but it's difficult to fit and this is the best they can do at the moment.

She suggested turning off the 4khz range completely to address the discomfort I'm having, but didn't want to make too many changes at once so I'll see how I feel with it as is for a while.

Today at tea time my mum sneezed- she has this unusual sneeze-cough sounding thing that always has 3 loud sounds and makes me cringe, but it was bearable. Things do seem a bit quieter and I had more trouble than usual following conversation at work, but the person I was talking to is very quiet, and I'm extremely tired.

I was surprised as I thought I'd be getting something like 20 in the lows, 0 in the mids (mine peaks up to 0-5 on my unaided headphone audiogram at 2khz naturally) and 40 at 4khz. I am hoping by the time my records come through these results will be on it cos the numbers are based on my terrible memory.

There, I said it..I don't like wearing hearing aids

I've had these moments of epiphany, where I can hear conversation very well and vow to always wear and clean and look after my hearing aids as long as we both shall live.

Then I have these moments- like the last few days- where I can't find new batteries, and I'm at home watching TV and doing chores, so I don't wear them. I put one in (before discovering I needed another battery) and turned it on, but all it did was make the TV louder and fill the room with a 'shhhhhh' of white noise. I don't think that's what hearing people hear- a constant fshhhhhhh in 'silence'.

Yes, I lipread the TV. My hearing aids make my ears itch, and people are constantly talking loudly but I don't understand it if they're not talking to me, or if I do it's because they're so loud I get a headache. Traffic is loud, and I don't need to hear it because I look where I'm going. Birds are loud too. My aided test results show- if I can remember correctly- everything was 30db or above (audio said 30 is normal) except the high frequency which was 60db. We agreed to lower it all a little, and voila, cutlery clinking doesn't make me want to rip my skin off anymore. She said if it's still too much we can turn off the high frequency altogether as I'm not getting much assistance at 60db. It's like walking a tightrope and getting to choose which side- hearing or hard of hearing- and to be brutally honest I don't like this loud world; my world feels 'just right' except that people mumble and don't speak properly. I guess my brain's still not used to it all; I have had only a few years of digital aids and not worn them for more than a few months at a time. I wore my analogues as little as possible until 16 then not at all.

The end of 'The Silence', ebay and driving...

I wasn't impressed by the ending of the BBC1 drama 'The Silence'. It's inferred that the uncles' coworkers are the murderers, but then they drug him and make it look like he's cut his wrists and leave him to die. The ending is basically the ambulance taking him away, his family crying, and Amelia asking her mum for her CI back.

Overall, I liked it, but there were some totally unrealistic bits- her understanding her uncles Scottish whispering from behind her- I couldn't hear it aided and I have a mild/mod loss and keep subtitles on. I did like when she stood up to her mother, who basically pushed the CI operation on Amelia, and yelled something like 'I'm not the hearing daughter you wanted, I'm not her!' I've never had this experience- I was a 'normal' child for 6 years until my hearing loss was discovered; thrust upon me.

Ebay! As you know, I'm learning to drive- I've been learning on and off for a long time because I used to have severe anxiety about driving. My theory test is soon. SOON! I must revise...they make you wear headphones to hear the voiceovers of the questions but it distracts me from reading the questions so I'll see if I can not wear them. I hope they don't make my hearing aids whistle. Last time I took (and failed) the test I was wearing the slimtube kind.

Anyway, cars cost money, and I'm now single, so I've thrown myself into this...I've put the musical instruments I no longer play on ebay- I made £50 the other day selling a guitar effects pedal, £15 today selling a music stand. If everything sells at the current bids I will have made £230! I have already paid £20 in ebay fees however (will pay more after they all sell) and set up a new domain for my jewellery website, which cost £60.

MONEY and the having of it scares me- it's something grownups have, not me. My aim is to save up about £600 by Christmas for buying a car when the time comes!

Lunch in Manchester with Miss Bionic

Yesterday I met Melissa from Miss Bionics' blog for lunch. After arranging to meet I was looking around for her only to feel somebody tapping me behind me!

It took us half an hour to find Panama Hattys restaurant. I attempted to use my iPhone map, realised I was reading it wrong, only to find it decided we were 'there' when we were standing in the middle of the street. Lissa made sure I didn't get run over- we don't have trams where I live so I spent a lot of time staring at the tram lines. It was easier to communicate as she wore her CI this time, though I did wonder why she was pointing and saying 'Look, shinytown!'-- oh, CHINA town! We do have an accent barrier.

After 20 minutes of running around she said 'Why don't you just ask someone?'. Well, that's admitting defeat! I asked a couple for directions, but in a broad Liverpudlian accent they told me they 'weren't from round 'ere'. Then I found a man who gave us vague directions, but we still couldn't find it. In the end I phoned the restaurant and a loudly speaking lady gave me directions.

The heat was sweltering- I was wiping sweat off my forehead all day. After a while, we'd come to the street the woman mentioned. Lissa's pointing and says 'look!'..'What?'... 'There'...I squint...there's a tiny sign which says Panama Hattys sideways.

We ran in and I went straight for the loo (it was a hot day) and ordered 2 lemonades. The loud but polite woman who worked there led us to a table in dimly lit area with ambient music. I drank my lemonade in about a minute. I had potato skins, which were a little disappointing- too crunchy, and chicken goujons which were delicious. Lissa had bbq ribs, and we shared fries and garlic bread (and ketchup!). The garlic bread was absolutely delicious- a soft bubbly bread covered in garlic butter.

The waiter who kept asking us if we liked our meal could have done with some training...I should have said something but I was very hot and just wanted to enjoy my meal. We were sat there with our hair up, both visibly wearing CI/hearing aids. He was extremely quiet, and the background music got quite loud at times. He had to ask me 3 times if we were enjoying our meals- the first time I didn't even know he was standing there!- and the third time all I could get was 'enjoy your meal?'. He came back later to ask if we wanted the dessert menu and it was the same performance.

Dessert was good, but not as spectacular as I expected. We both had Ben and Jerrys icecream sundaes- phish food and chocolate fudge brownie. They came with a strawberry, sprig of mint and some warm chocolate sauce, which was not as nice as it sounds. The look on Lissa's face when she saw the mint sprig was priceless! After I'd had my third lemonade, we decided it was time to go shopping, so we got up to go to the main counter and pay. The same quiet waiter walks past us and says something about paying, while waving his hand and running off. We pay. I ask Lissa 'what did he say?', she says 'I dunno!'...I didn't know either, but it cracked me up.

Then we went shopping- Lissa got a Harry Potter game and a word game for her Nintendo DSi. I sweated half to death in H&M and Primark with feet that are too big for a size 4 and too small for a 5 :-( then I got a pair of jeans, a skirt and a diary.

That was the end of our day, and we went home tired and happy!

Spring Fever!

Having depression makes me very tired sometimes. Sometimes I can barely drag myself out of bed. 'Normal' things take lots of energy, mentally and physically, meaning I'm nearly always tired. People think I'm lazy. Sometimes I think I am, but I'm not sure how to tell. Today has been a strange day. I had the first good night's sleep in 2 weeks- the cats went to bed shut in downstairs, and I slept from 10.30-5, then again til 8. I usually wake 3-4 times in the night, for the loo, or waking up from bad dreams with a jolt, sweating, then going back to sleep.

I managed not to fall asleep at work- I actually have some work to do now, which is good -and came home and showered asap. I think this tricked my brain, because after that I managed to clean the cat litter tray, feed the cats, put plates in the dishwasher, put clothes in the washer and feed myself something. This is normally a big thing if it gets accomplished in a day, not an hour and a half.

Then I decided, as always, I Need Some Money. Learning to drive isn't cheap, and if I really want to be a Driver, I need to save up for a car. My theory test is in a month. So I looked at the sad-looking lonely pile of jewellery I made around Christmas-time. Maybe it's just me, but I think having depression makes everything take longer. I make jewellery and crafty things then decide it's all rubbish and should be hidden away, lest anyone know of the 'things' that my brain has produced. Then a little part of me pips up that maybe it's actually quite pretty, and I should put some pictures on my blog so people can see what I enjoy doing. If just one person sees them and smiles, it makes me feel happy.

Et voila...

my childhood

Melissa from Melissa's Cochlear Implant wanted to know more about my childhood.

I was born at 2.22pm on 24/6/85, 3 months early after my mum was given some sort of injection to delay my birth. My earliest memory is aged 3 at playschool, when another girl fell off the slide, broke her arm and got taken to hospital.

I don't remember, but mum says I had a horrible teacher at infant school called Miss Fardy. She smacked me when I destroyed a Wendy house, and complained at parents evening that all the children were too noisy and ran around too much. My mum came to collect me one day and saw the other children carrying little yellow books. When she asked about them, Miss Fardy said I didn't have one as she 'didn't think I was ready' to start reading. I was 6 and could already read bits and bobs at home. My mum then taught me to read using the Puddle Lane childrens books.

It was around this time that my school suggested I have a hearing test. When told of the results, Miss Fardy said she thought I was just ignoring her. I was given some sort of foamy headphones/radio aid combo as they couldn't get me actual hearing aids until I was 7. I didn't like it- I don't remember being told I needed it, but all of a sudden I had to wear this thing and everybody was making fun of me.

When I was 7 I got Starkey Paediatric ITEs, which I hated. They make everything loud and fuzzy, and I hated wearing the radio aid as it was obvious I was different. I was different from the other children who wore aids as they all had BTEs and knew each other before I came along. I used to get in trouble for taking out the radio aid leads and hearing aids. I loved being with the other kids in the unit but hated mainstream classes as they were now loud, noisy, and crowded with the unit staff constantly following me and treating me like a small child. I used to take them out the minute I got home. They fell in a puddle once when I got out of the car, and we had to dry them out with a hairdryer.

When I was 7 or 8 my nanna died from ovarian cancer. I don't remember much about it but seeing her in hospital/hospice and then suddenly she was gone. Mum used to drop me off at nanna and grandads in the school holidays when she went to work part time in the mornings, and I remember having toast with jam on, and eating boiled eggs with brown bread soldiers with nanna. I remember coming home from playschool once with a painting, the kind where it still smelled like poster paint and the paper was crusted thickly with colours. Grandad in his typical way said 'What's this, we don't wanna be doin with this, ere we go!' and put it in the bin as the paint was flaking off. I was sad.

Mum tells me that after nanna died, grandad used to come round every night after I'd been put to bed. After a few months I kept coming downstairs and refusing to go back to bed- when mum asked me what the matter was, I cried and said I couldn't sleep because I was thinking about nanna.

My best friends at the time were Sarah and James, twins who lived across the road. We used to play in the garden and write plays. I remember their older sister asking if I had 'aids'- not funny. They moved away when I was 13 and in high school.

More stories to come...