Jean's CI Journey

I've passed the two week mark, and it feels a bit like the honeymoon is over.  I've been very emotionally stable for the first two weeks (definitely an answer to prayer), but the last couple of days I've been more up and down, more tired, more frustrated. In terms of hearing voices, when I'm in a quiet room, it feels to me like I'm approaching what I could hear with aids, albeit with the volume turned down several notches.  Voices are becoming clearer, and so I find myself trying to hear more, unlike the first 10-12 days when I was relying totally on lipreading and not paying much attention to the sounds.  Which is fine when it's quiet.  But when it gets noisy - by the busy road on the school run, as already mentioned, or in a noisy playground before school, or this afternoon when they had open classroom, for parents to pop in and see their childrens' artwork - then it gets a whole lot harder.  The CI seems to work to mute background noise - so I'm awa...

Today is two weeks since switch-on.  It feels like a month, but at the same time it feels like no time at all.  The paradox of time that I'm sure you'll all recognise. Voices seem to be sounding increasingly like voices to me, which is encouraging.  The voices still sound very distant and unclear, and with a limited variety of tones, much as I imagine a hearing person would hear a voice through a thick wall of glass, or a fire door.  I'm noticing various "shush-y" sounds and breathy sounds, presumably as I'm beginning to hear some more high pitched frequencies.  Paragraph tracking is getting easier, and now I'm starting to listen for specific sounds, like "s", "ch", "sh" as I read - seeing the word on the page helps me know what I'm listening for (more subconsciously than consciously), which is the point of the exercise - helping my brain hear and identify different speech sounds. I tried my SLT homework last night wi...

I've been a bit slow to start writing this blog post tonight because I've been (somewhat anxiously!) Googling: "does a CI survive a dunk in the bath?".  I was cleaning the boys' ears at bathtime tonight, and I just tilted my head to the left to look into C's ear (as you do) and the processor slipped off my ear and for a split second hung from my magnetic headpiece before that too slipped off my head and the whole thing went splosh into the deep end of the bath. I grabbed it immediately, and it's now in my drying box (little gadget with fan and heating element that I put my device into every night) for a 2.5hour cycle. Just one more hour until I can get it out and find out if it still works.... 😧 Meantime, might as well keep myself occupied.... Cycling to the train station turned out to be no big deal. It was my first time cycling alone since the CI switch on.  To put it simply, while cycling, I couldn't hear a thing.  But it was fine.  I was safe....

My second hospital appointment is tomorrow, but I wanted to share a few things that have happened in the last few days. Firstly, on a lighthearted note: on Wednesday my magnetic headpiece jumped ship for the first time! I went to the playpark with C, and (as usual) he requested a push on the roundabout.  I sat on it next to him, leaned my head back against the rail, and "clunk" - my CI was attached to the roundabout! And so was I - some strands of my hair were trapped under the powerful magnet and I couldn't pull free.  Clearly a large metal roundabout was a more attractive proposition than my small head! When doing my paragraph tracking homework on Tuesday night (still on prog 3) I kept feeling like I was cheating, because I seemed to be hearing more of Stuart's voice than I thought I should be!  When he read the line "Jack had a granny and his granny had spots" (anyone recognise which story that is ?) I heard "dum dum-da dum-dum dum dumsh dum-dum ...

Six days after switch-on. First day back into routine.  And I'm still alive to write a blog post.  I have felt so supported, both practically, and through answers to all those prayers that so many of you are praying for me - thank you. I'm now on programme three, out of the four I need to progress through by Friday. A bit louder, a bit more eye frazzling at times, but not too much.  A few more sounds being detected, like the tap running, microwave beeping, and toilet paper tearing (!). The school run is a largely silent trip for me, as I'm not yet noticing traffic noise or voices at a distance, though I did find the playground a source of some noise.  This afternoon school run was pretty incredible though.  I was expecting to shuffle in, hide in the corner of the playground and just nod distantly at my Mum-friends (you know, in the way that says "hello-nice-to-see-you-but-I-don't-want-to-talk-to-anyone-today"), and shuffle home again.  Or something like t...

It's day three, and while things seem much the same, there are small signs of progress.  Today at lunchtime I changed to programme number 2 on my CI device.  The audiologist has set it up with four programmes, essentially the same but each just a little louder than the previous one.  By next Friday (my next appointment at RNTNE) I should be using programme 4.  I haven't yet noticed a huge difference - I was expecting a big step up in volume, and to be squeezing my eyes shut to stop them shaking themselves out of their sockets!  I'm thankful for the relatively small step. It's not easy to get you inside my head to understand what I'm experiencing.  It seems to me like nothing has changed over the last two days.  But I look back at my description of what I was hearing on day 1, and I realise that I wouldn't really call the sound a "boom" anymore.  It is more of a cross between a "clunk" or a "beep" type of noise now.  I still experi...

I have been so grateful for each and every one of my friends and family who sent me messages yesterday and today to say they were thinking of me, and praying for me today. Your support has meant a huge amount to me. Today has been, well, I don't know what adjective or emotion best describes it. It's just been a lot to take in. Tiring, new, strange, daunting, dizzying... those are a few to get you started! The CI is now on, and the next, and hardest, stage of this long journey has begun. The Cochlear Implant actually works (hooray!), and the Audiologist is pleased with my brain's response to the electrical signals. But what I'm hearing? Well, it doesn't resemble what I've heard as sound for all my life so far. It's very hard to describe, but I'll give it a go. Imagine having a goldfish bowl on your head so that only the loudest sounds come through, sounding very distant and muted (it's a little like tinnitus, for those of you who may have experi...

OK, so I've been getting quite a lot of questions about the technical details of a Cochlear Implant, and why I've had a 6 week wait between surgery and everything being switched on. I've been trying to find an online article that explains the components of a CI clearly and concisely. And then Stuart's Mum passed me an article from The Times newspaper about twins who had Cochlear Implants. And it had a great diagram that I thought might be helpful for those of you wanting more technical detail. (Click on the image for a larger view.) Everything described on the right side of the diagram (the electrodes in the cochlear, and the receiver (complete with magnet)), were implanted during my operation on the 25th March. Everything on the left (the earpiece with microphone, processor and transmitter coil (also with a magnet, which attaches to my head adjacent to the internal magnet)) are the external hardware that will be given to me, "switched on", and programm...

The idea is that this post will be a "live" post that I'll update in a few months time, to compare hearing aids vs Cochlear Implant.  Here's a few things I've been thinking about recently, and wondering if they will be easier, or how they might be different with a CI.  This post is quite long, but my hope is also that if you take the time to read this, you might come away with a little more of an understanding of what it's like to be deaf and rely on lipreading. * Walking and talking with the boys At the moment, because I rely so heavily on lipreading, I can't have a conversation with the boys when we are walking anywhere - on the school run, for example.  If they are talking to me, I have to stop, crouch down to their level and get them to look at me and repeat what they said, before I can understand them.  So the walk becomes very stop-start, or it has to be one-sided or silent. I'd love to be able to have a conversation with them while we're ...