At the moment I am just. so. tired. It's been almost a week since my last hospital appointment, when the audiologist bumped the gain up quite a lot. He said it was a bigger step increase than I'd had before, and bigger than any of the upcoming increases that he's programmed into my processor. It seems like this big gain (plus some lingering tiredness from half term last week, which was also the week that my younger son C chose to drop his naps...) has just knocked me for six. I have never been more thankful for a husband who works from home and has some flexibility with his working hours. And for a younger son who, despite dropping naps, can do quite long periods of playing well on his own (while Dad listens out for him), so that I can have some naps. Today, after doing a food shop and picking up some supplies for the upcoming 5th birthday party, I came home and slept for two hours. And by dinnertime, I was knackered again, and ready for bed. It's at times like this I have to push away thoughts about my chronic fatigue returning (I had M.E. for 7.5 years, from 2002-2009), and just accept that this is the CI doing this to me, and that it will get better.
I also am still finding this setting a little loud at times, and even after a week am not yet ready to go up to the next programme. This leads to some fears that maybe I'll never be ready to move up, so then I'll be stuck on this level, and won't gain more clarity. Also, I asked the audiologist last Friday about whether the settings can be tweaked to make it easier for me to hear speech in noisy background situations. He said that they can be - and I can also have a remote control to change the programme according to the situation I'm in - but not until I've reached my maximum gain level. It makes sense, but is another reason for being frustrated about my slowness in moving up through the programmes at the moment. I'm thankful for life generally being busy, with the boys, church, and family things, to stop me thinking too much about this!
Today, when not asleep, I have been battling with my sunglasses. The processor sits behind my ear, just like a hearing aid. But unlike the hearing aids I've worn all my life, it's bigger, heavier, and is not firmly attached to my head! With the hearing aids I had a very snug mould that fitted into my outer ear, to channel the amplified sound into my ear canal without any leaks. So, if the behind-the-ear aid slipped off from behind the ear, it just dangled, held safe by the tube connecting it to the mould wedged in my ear. With a CI, there is no mould, because it doesn't work like a hearing aid, amplifying sound waves. (It takes the sound waves and converts them to electrical signals, which are transmitted into the CI implant via the magnetically attached headpiece.) So the processor basically just hooks onto my ear and balances there - until I move my head in the wrong direction, or something, like my sunglasses, pushes it off. The weakening of the magnet (at my last hospital appointment) is not helping either. On four separate occasions on the sunny school run this afternoon, my 'ear' (the CI processor) fell off my head (once while crossing a road - I had to return for it before it was squashed by a passing car, leaving my sons stranded in the middle of the road - NOT your ideal scenario!) because the balance of the processor was made even more precarious by the sunglasses 'arm' hooked onto my ear, and the magnet failed to hold it on. I need to find new sunglasses with thinner arms, or cut the offending arm off (that sounds a bit sinister when put like that!) and see if I can still wear them with just one arm.
After my last blog post (about my greater than average sensitivity to the gain of the processor, and my secret hopes that I might have been able to do it faster than was expected for my particular profile) my next sister up (Jenny, who's also deaf) commented that she totally understood my feelings. She pointed out that all our lives we have both worked hard to prove ourselves, to show that we are capable of achieving just as much as the next (non-deaf) person (we are the only deaf people in our family, in our church, in our school - in fact we never really knew any other deaf people, growing up, other than each other), that it's difficult when no amount of hard work can compensate, when we have to just accept that we aren't going to be near the top of the class this time.
I've also been reflecting recently that I am terrible at telling people that I'm deaf. There are so many reasons, and it depends on any given situation, but the list includes:
* Fear of rejection
* Feeling like it'll take too long to explain
* Not being sure how to explain it in a way that the other person won't feel awkward (surely I ought to have figured this one out by now, after 37 years?!)
* Fear of the other person thinking of me in terms of stereotypes and dumbing things down/shouting/over-enunciating (it's happened enough times before)
* Fear that the other person will be too scared of the effort involved to communicate clearly
* Feeling too tired/busy/stressed to bother
* Thinking that if I can just get through the next few minutes, then it'll be OK, they'll be none the wiser, and I'll have saved myself some hassle... (This is a favourite of mine when meeting new people for the first time, especially in a brief encounter, and too often it works....!)
Often I prefer to tell people I'm hard of hearing, as my experience is that they find this less intimidating. But then they don't realise just how deaf I am...
Today at Aldi I had a very chatty cashier. I've had her before, and she is lovely. But she talks non-stop. So I have a choice - watch her, and then I can't pack my bags. Or pack my bags of shopping, and not hear a word she's saying, and just smile and nod and hope that satisfies her. But for some reason I always forget I have a third option - to interrupt her, and explain. Today I obviously didn't do a good job on the smiling/nodding/uh-huh-ing, and she clearly picked up something wasn't right, and faltered and tailed off. And then said something else, very tentatively. Finally I realised I was going to have to explain, so I just said "I'm sorry, I need to lipread you to understand you, and I can't do that while I'm busy putting my shopping in the bags." And she seemed to be fine with that, and stayed quiet for a bit. But then after a pause, off she went again, about her best friend being deaf.....which I'm afraid was all I got, because the rest just flowed over my head while I concentrated on paying! ;)
Time to sign off here and head to bed - I have a busy weekend coming up, with Stuart again working on Saturday, and R's 5th birthday party on Sunday (dinosaur themed - it's mostly planned out, Stuart's just figuring out how to get the zipwire working properly!). The next blog post may not be from me - Stuart has said he'd like to do a guest post, so we'll let you know when that's ready to go. :)
I also am still finding this setting a little loud at times, and even after a week am not yet ready to go up to the next programme. This leads to some fears that maybe I'll never be ready to move up, so then I'll be stuck on this level, and won't gain more clarity. Also, I asked the audiologist last Friday about whether the settings can be tweaked to make it easier for me to hear speech in noisy background situations. He said that they can be - and I can also have a remote control to change the programme according to the situation I'm in - but not until I've reached my maximum gain level. It makes sense, but is another reason for being frustrated about my slowness in moving up through the programmes at the moment. I'm thankful for life generally being busy, with the boys, church, and family things, to stop me thinking too much about this!
Today, when not asleep, I have been battling with my sunglasses. The processor sits behind my ear, just like a hearing aid. But unlike the hearing aids I've worn all my life, it's bigger, heavier, and is not firmly attached to my head! With the hearing aids I had a very snug mould that fitted into my outer ear, to channel the amplified sound into my ear canal without any leaks. So, if the behind-the-ear aid slipped off from behind the ear, it just dangled, held safe by the tube connecting it to the mould wedged in my ear. With a CI, there is no mould, because it doesn't work like a hearing aid, amplifying sound waves. (It takes the sound waves and converts them to electrical signals, which are transmitted into the CI implant via the magnetically attached headpiece.) So the processor basically just hooks onto my ear and balances there - until I move my head in the wrong direction, or something, like my sunglasses, pushes it off. The weakening of the magnet (at my last hospital appointment) is not helping either. On four separate occasions on the sunny school run this afternoon, my 'ear' (the CI processor) fell off my head (once while crossing a road - I had to return for it before it was squashed by a passing car, leaving my sons stranded in the middle of the road - NOT your ideal scenario!) because the balance of the processor was made even more precarious by the sunglasses 'arm' hooked onto my ear, and the magnet failed to hold it on. I need to find new sunglasses with thinner arms, or cut the offending arm off (that sounds a bit sinister when put like that!) and see if I can still wear them with just one arm.
 |
| Chunky framed sunglasses - maybe I need to go for a thinner aviator style? |
After my last blog post (about my greater than average sensitivity to the gain of the processor, and my secret hopes that I might have been able to do it faster than was expected for my particular profile) my next sister up (Jenny, who's also deaf) commented that she totally understood my feelings. She pointed out that all our lives we have both worked hard to prove ourselves, to show that we are capable of achieving just as much as the next (non-deaf) person (we are the only deaf people in our family, in our church, in our school - in fact we never really knew any other deaf people, growing up, other than each other), that it's difficult when no amount of hard work can compensate, when we have to just accept that we aren't going to be near the top of the class this time.
* Fear of rejection
* Feeling like it'll take too long to explain
* Not being sure how to explain it in a way that the other person won't feel awkward (surely I ought to have figured this one out by now, after 37 years?!)
* Fear of the other person thinking of me in terms of stereotypes and dumbing things down/shouting/over-enunciating (it's happened enough times before)
* Fear that the other person will be too scared of the effort involved to communicate clearly
* Feeling too tired/busy/stressed to bother
* Thinking that if I can just get through the next few minutes, then it'll be OK, they'll be none the wiser, and I'll have saved myself some hassle... (This is a favourite of mine when meeting new people for the first time, especially in a brief encounter, and too often it works....!)
Often I prefer to tell people I'm hard of hearing, as my experience is that they find this less intimidating. But then they don't realise just how deaf I am...
Today at Aldi I had a very chatty cashier. I've had her before, and she is lovely. But she talks non-stop. So I have a choice - watch her, and then I can't pack my bags. Or pack my bags of shopping, and not hear a word she's saying, and just smile and nod and hope that satisfies her. But for some reason I always forget I have a third option - to interrupt her, and explain. Today I obviously didn't do a good job on the smiling/nodding/uh-huh-ing, and she clearly picked up something wasn't right, and faltered and tailed off. And then said something else, very tentatively. Finally I realised I was going to have to explain, so I just said "I'm sorry, I need to lipread you to understand you, and I can't do that while I'm busy putting my shopping in the bags." And she seemed to be fine with that, and stayed quiet for a bit. But then after a pause, off she went again, about her best friend being deaf.....which I'm afraid was all I got, because the rest just flowed over my head while I concentrated on paying! ;)
Time to sign off here and head to bed - I have a busy weekend coming up, with Stuart again working on Saturday, and R's 5th birthday party on Sunday (dinosaur themed - it's mostly planned out, Stuart's just figuring out how to get the zipwire working properly!). The next blog post may not be from me - Stuart has said he'd like to do a guest post, so we'll let you know when that's ready to go. :)
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