So, I've been trying to make a bit of sense of where I'm at, because it's hard to quantify, to get it straight in my own head, let alone explain it to other people! Here's an attempt...
Since "Switch-on" on the 8th May 2019, the audiologist has slowly been increasing the gain on my CI. Much like when you turn on the radio, if the volume is set way too low, you can only hear a mumble, a collection of sounds, and not all of them. It doesn't make sense. You're straining to hear, but there's no way you can understand it all. But, as you turn the volume slowly up, the sounds come into focus, until you reach the optimal volume, when you can hear the voices, the music, the sound effects and background noises, clearly, and identify each one. That's the end goal for me. As the gain on my CI is increased, so I will gain increased clarity, a greater breadth of sound, and with that comes recognition and identification of the sounds. At the moment though, I don't know what the final target is, so I don't know if I'm nearly there or barely there. My hunch is that I'm probably around halfway there. But I don't think even the audiologist knows for sure, because the "average" varies a lot, so they can't know where I'm going to end up.
But they can't turn the volume up too fast. My brain gets overwhelmed if I do. My head hurts, my eyes struggle to focus (the familiar eyeball vibration comes back), and I get very tired, very quickly. Up until my last hospital appointment it's taken me, on average, 2-4 days to adjust to each increase, and then I'm ready to move on to the next programme, and up the gain a bit more. But after the last hospital appointment it took me 2.5 weeks to adjust to that setting/programme, before I was ready to move onto the next programme. And I had to push myself to do it. It then took 5 days on programme two before I moved onto number three. I don't know how much bigger the step up (made at the hospital) was than previous ones - that's something to find out. And now I've realised it's just two days to my next appointment, and I feel like I'm "failing" at my homework - I was supposed to aim to be at least on programme four, if not five, by then....and I'm only just on three and not ready yet to move on. That doesn't make me feel good.
So what can I actually hear at the moment? When I'm talking to people, face to face in a quiet room, I think that I probably hear their voices with about the same level of clarity as I did previously, with one hearing aid. So I'm not depending totally on lipreading as I was in the early days after switch on, but it's still a necessary part of understanding anything that's being said to me - as it has been all my life. But where it's different from before is that I am still getting used to how things sound now. I couldn't tell you without looking whether it was a man or woman, or even a child's voice. Stuart's voice doesn't sound like it used to sound to me - and it changes every few days as I change the programmes. I can't tell the difference between a marble run rattling as the marbles clatter down it, and a child crying. Stuart sneezed behind me the other day and it totally made me jump. I thought something very hard and heavy had crashed to the floor. The piano was playing in the next room at my sister's yesterday, and I thought it was the children calling to each other. I was home alone a couple of evenings over the weekend, and there were several noises I heard, that I have absolutely no idea what they were, or even whether they were inside or outside the house.
The more time I spend learning to identify sounds, the more I realise how much I'm listening for rhythms and patterns. As I type, I'm by an open window, and I'm hearing some sounds. After listening to it for a while, I'm fairly sure I'm hearing a bird of some kind, simply because the same set of sounds is repeated over and over, sometimes there's a pause and then it starts up again. During the day at home, I can usually identify that someone is talking because of the pattern of sound. But if the sound is continuous then it could be the continuous rattle of a marble rolling down a long marble run, or it could be a child emitting a continuous cry. If there's loud voices from the next room, it could be excited children playing or it could be a fight. And that's why my brain gets so tired. It's always trying to work out what the noises are - sometimes consciously, sometimes subconciously...but always it's working hard - until I unplug my "ear" at naptime or bedtime and there's the bliss of no sound to strain to identify.
An unexpected side effect of this CI journey is that I'm losing weight - is tiredness making me less hungry? Is stress making me eat less? I certainly know I lost a bit immediately after surgery when I lost the sense of taste for a few weeks. But the weight loss is continuing even now I have (most of) my taste back. One theory that's been put forward is that maybe my brain is burning extra calories because of how hard it's working! Anyone know if this is plausible?!
I'm a bit frustrated that I haven't yet been able to get back to running. Actually, I can't even jog, because the current magnet on my headpiece is so weak that as soon as I start, the jolting makes the magnet fall off! Annoying, really. Once my energy levels are good enough for me to get back to running again, I could run without my CI, or get a special headband to hold it in place (I'll likely have to get that anyway, for when I go back to playing netball), but it's inconvenient in the everyday - I can't run around the playpark with C because I know the CI will fall off. If I leap/start forward to catch something, sometimes my CI gets left behind, as it were. I need to talk to the audiologist about this and see if he's willing to put it back to a stronger one, because it's bugging me!
Looking back at early blog posts I can see that it's not just my hearing that's been changing: the boys have been too. Both boys are crying/yelling/shouting a lot less now than they were! They are growing up. I don't know if this CI journey has been part of that, or if it would have happened anyway. R has always been very clear in speech, but he is increasingly using his hands to gesture or outline a shape to help me understand keys words - and C has actually started doing that in the last day or two as well. With his learning at school R is able to use phonics sounds sometimes to help me work out what word he's saying, or to correct me when I repeat his words incorrectly. I'm looking forward to the time when he'll be able to write a word for me or spell it out. But then maybe by the time he is able to do that, I won't need him to, anymore! Who will get there first - R with his writing, or me with my hearing? ;) Meantime, C's speech is becoming more clear, he is (generally) better at getting my attention, waiting for me to look at him, and keeping his face turned towards me while he's speaking.
So it's been a journey for all of us. And it's ongoing. I don't know where the end is, and how long it'll take for us to get there. But it's a positive journey, despite the many challenges. There are little encouragements that really help. It's been a bit of a dry patch recently, with the 2.5weeks stuck on the same programme, reaching a new low in energy, but then when I finally managed to get onto programme two a week ago, I was excited to discover I could now hearing the clock ticking in the kitchen! I've heard loud ticking clocks before. But this one is fairly quiet (says Stuart), and I've never heard it before. I know it's not a useful sound to hear. But it's a new sound to me, and that gave me some much needed encouragement. Then a few days later at Sports Day, I talked to lots of different Mums, had some great conversations, felt like I could hear them just that bit more easily, and even, with one lady (Lithuanian, I think), started to wonder if I was starting to hear an accent, after the way she said one word just seemed a bit, well, different, to me. If after just 7 weeks I'm learning to hear almost as well as (and in some ways a bit better than) I've been able to hear my whole life, what more could I gain over the coming year? That's the exciting bit, and that's what I need to keep in mind. I know God will get me there, and I just need to trust Him through the ups and downs of the journey.
Since "Switch-on" on the 8th May 2019, the audiologist has slowly been increasing the gain on my CI. Much like when you turn on the radio, if the volume is set way too low, you can only hear a mumble, a collection of sounds, and not all of them. It doesn't make sense. You're straining to hear, but there's no way you can understand it all. But, as you turn the volume slowly up, the sounds come into focus, until you reach the optimal volume, when you can hear the voices, the music, the sound effects and background noises, clearly, and identify each one. That's the end goal for me. As the gain on my CI is increased, so I will gain increased clarity, a greater breadth of sound, and with that comes recognition and identification of the sounds. At the moment though, I don't know what the final target is, so I don't know if I'm nearly there or barely there. My hunch is that I'm probably around halfway there. But I don't think even the audiologist knows for sure, because the "average" varies a lot, so they can't know where I'm going to end up.
But they can't turn the volume up too fast. My brain gets overwhelmed if I do. My head hurts, my eyes struggle to focus (the familiar eyeball vibration comes back), and I get very tired, very quickly. Up until my last hospital appointment it's taken me, on average, 2-4 days to adjust to each increase, and then I'm ready to move on to the next programme, and up the gain a bit more. But after the last hospital appointment it took me 2.5 weeks to adjust to that setting/programme, before I was ready to move onto the next programme. And I had to push myself to do it. It then took 5 days on programme two before I moved onto number three. I don't know how much bigger the step up (made at the hospital) was than previous ones - that's something to find out. And now I've realised it's just two days to my next appointment, and I feel like I'm "failing" at my homework - I was supposed to aim to be at least on programme four, if not five, by then....and I'm only just on three and not ready yet to move on. That doesn't make me feel good.
So what can I actually hear at the moment? When I'm talking to people, face to face in a quiet room, I think that I probably hear their voices with about the same level of clarity as I did previously, with one hearing aid. So I'm not depending totally on lipreading as I was in the early days after switch on, but it's still a necessary part of understanding anything that's being said to me - as it has been all my life. But where it's different from before is that I am still getting used to how things sound now. I couldn't tell you without looking whether it was a man or woman, or even a child's voice. Stuart's voice doesn't sound like it used to sound to me - and it changes every few days as I change the programmes. I can't tell the difference between a marble run rattling as the marbles clatter down it, and a child crying. Stuart sneezed behind me the other day and it totally made me jump. I thought something very hard and heavy had crashed to the floor. The piano was playing in the next room at my sister's yesterday, and I thought it was the children calling to each other. I was home alone a couple of evenings over the weekend, and there were several noises I heard, that I have absolutely no idea what they were, or even whether they were inside or outside the house.
The more time I spend learning to identify sounds, the more I realise how much I'm listening for rhythms and patterns. As I type, I'm by an open window, and I'm hearing some sounds. After listening to it for a while, I'm fairly sure I'm hearing a bird of some kind, simply because the same set of sounds is repeated over and over, sometimes there's a pause and then it starts up again. During the day at home, I can usually identify that someone is talking because of the pattern of sound. But if the sound is continuous then it could be the continuous rattle of a marble rolling down a long marble run, or it could be a child emitting a continuous cry. If there's loud voices from the next room, it could be excited children playing or it could be a fight. And that's why my brain gets so tired. It's always trying to work out what the noises are - sometimes consciously, sometimes subconciously...but always it's working hard - until I unplug my "ear" at naptime or bedtime and there's the bliss of no sound to strain to identify.
An unexpected side effect of this CI journey is that I'm losing weight - is tiredness making me less hungry? Is stress making me eat less? I certainly know I lost a bit immediately after surgery when I lost the sense of taste for a few weeks. But the weight loss is continuing even now I have (most of) my taste back. One theory that's been put forward is that maybe my brain is burning extra calories because of how hard it's working! Anyone know if this is plausible?!
I'm a bit frustrated that I haven't yet been able to get back to running. Actually, I can't even jog, because the current magnet on my headpiece is so weak that as soon as I start, the jolting makes the magnet fall off! Annoying, really. Once my energy levels are good enough for me to get back to running again, I could run without my CI, or get a special headband to hold it in place (I'll likely have to get that anyway, for when I go back to playing netball), but it's inconvenient in the everyday - I can't run around the playpark with C because I know the CI will fall off. If I leap/start forward to catch something, sometimes my CI gets left behind, as it were. I need to talk to the audiologist about this and see if he's willing to put it back to a stronger one, because it's bugging me!
Looking back at early blog posts I can see that it's not just my hearing that's been changing: the boys have been too. Both boys are crying/yelling/shouting a lot less now than they were! They are growing up. I don't know if this CI journey has been part of that, or if it would have happened anyway. R has always been very clear in speech, but he is increasingly using his hands to gesture or outline a shape to help me understand keys words - and C has actually started doing that in the last day or two as well. With his learning at school R is able to use phonics sounds sometimes to help me work out what word he's saying, or to correct me when I repeat his words incorrectly. I'm looking forward to the time when he'll be able to write a word for me or spell it out. But then maybe by the time he is able to do that, I won't need him to, anymore! Who will get there first - R with his writing, or me with my hearing? ;) Meantime, C's speech is becoming more clear, he is (generally) better at getting my attention, waiting for me to look at him, and keeping his face turned towards me while he's speaking.
So it's been a journey for all of us. And it's ongoing. I don't know where the end is, and how long it'll take for us to get there. But it's a positive journey, despite the many challenges. There are little encouragements that really help. It's been a bit of a dry patch recently, with the 2.5weeks stuck on the same programme, reaching a new low in energy, but then when I finally managed to get onto programme two a week ago, I was excited to discover I could now hearing the clock ticking in the kitchen! I've heard loud ticking clocks before. But this one is fairly quiet (says Stuart), and I've never heard it before. I know it's not a useful sound to hear. But it's a new sound to me, and that gave me some much needed encouragement. Then a few days later at Sports Day, I talked to lots of different Mums, had some great conversations, felt like I could hear them just that bit more easily, and even, with one lady (Lithuanian, I think), started to wonder if I was starting to hear an accent, after the way she said one word just seemed a bit, well, different, to me. If after just 7 weeks I'm learning to hear almost as well as (and in some ways a bit better than) I've been able to hear my whole life, what more could I gain over the coming year? That's the exciting bit, and that's what I need to keep in mind. I know God will get me there, and I just need to trust Him through the ups and downs of the journey.
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