Bridge over troubled waters – 6th day CI activation

Getting stereo again is just great, I kid you not. I have been walking on clouds this week, despite some troubles.  (read more below picture)

 

Walking_On_Clouds

 

Sound is, even though my newfound ear is very weak and undeveloped, much, much more gratifying to absorb. It is as if the sound world just came alive. From being flat, dull, monophonic, dead, boring and lacking essential information; it became vibrant, alive, all-covering and moving (to my brain) and complete.

nero-runninMusic is better, lyrics pop out much better (no matter how hard I tried with one ear, some things where not possible to grasp auditory, even though I knew what was being sung), vibrations in music, like harmonies are back in force. In short, music is alive and moving again.

So, get this: I love what is happening, and I can’t wait for the time ahead; I know I still have a lot of good stuff coming! Smilefjes

Now, that’s the white clouds, now over to the gray rainclouds…

Challenge 1:  Overwhelmed and family life

overwhelmed3My brain is simply overwhelmed by this. Day one to three was all about amping up the processor according to what my left side hearing nerves and brain could handle (without it becoming painful). On day three the mapping (all 16 frequencies per electrode) was on par with the right ear!

That is nothing but astonishing to me! The right ear (in fact, it is the brain that do this work) used maybe 2 years getting to that level, and a lot of trying and erring in terms of settings in the software. A lot of parameters concerning both resistance (in the fabric of my biological tissues, perhaps even buildup of some kind of patina on the electrodes), audio-physics (amplitude; the length of waves) and Clear Voice™.

basementBut the overwhelming issue (Trouble 1) has a price: I am somewhat fatigued from before, with very little reserve to go on, and now it’s right down into the basement again. I have been there so much this winter, and frankly I’m getting very sick of it.

baby-cryingI have a family that also has to live with this; 4 month toddler with water in the middle ear (somewhat painful at times, she wakes up screaming her head off), and my dear wife has so far taken 99% of the burden of this. (image to the left is not of my daughter)

It’s so unfair to her! I can’t support her (take my share of the “workload”), and take care of Joanna the way I wish I could. Along with this issue, comes a strain on our relationship, mental challenges and so on. But, we’re coping, learning, and getting more and more secure with each other. It is in hardship a relationship is tested…

Having said that, we manage, and Joanna is getting medical attention. (we had her hearing tested, and she was then diagnosed with water in the middle ear in her left ear (otitis media))… We just have to wait and see what can be done. I really don’t want to puncture her eardrum….

Challenge 2: Balance

balanceLight headedness and balance issues. With the new new sound, my balance is set for another test-drive. Sound input is clearly affecting my balance. It feels as if my brain is swimming inside my skull. I also have a feeling of difficulty of fixating my eyes (it only feels like that, I can read and drive and play computer games just fine). It is weird, because getting this new sound is a satisfying experience, at the same time it feels confusing to ALL my senses.

I guess the three years of complete silence on my left ear made the nerves rather raw, and now I’m dancing on these raw nerves!

Challenge 3: Vision

Vision affected. As I mentioned in Trouble 2; feels like trouble fixating (but not real). It’s all in my mind, but it certainly makes me tired. This problem is particularly felt when I move my head in any way. Balance is closely connected to vision.

Challenge 4: Fatigue

Utbrent_slitenAll these things combined takes it toll. OK, I’m only on day 6 of this new era of my (our) life. Give it time and it will get better, of course. But the idea of putting this into the blog is to share experiences and be a little part of the experience and data-bank internet is… I hope writing this gives other people (my family, friends, health authorities, my government and everybody else who might be interested) better insight. And in turn are able to make better decisions in the future.

The politics in Norway

It is my opinion that todays political handling of deaf-operations in Norway is poor, substandard and backwards. A lot can be done better, and the best part is that making better decisions will actually save the society a LOT of money in the future!

But in order to do that, we have to get knowledge and insight across. This is my humble attempt to do just that…

How does it sound on my new ear?

augmented-xylophoneVery much like my first ear did in the beginning. It’s very light, helium-ish. And music  and speech sounds are very noisy by itself (isolated). Robotic is the best description I can make.

It’s strange, because along with my other ear, noise isn’t so tiring as it was with only one ear… And sounds sound better with both ears working together. Even when this new ear is still “fresh”, infantile and by itself almost useless.

But something is different, and I guess it’s the brains ability to interpret the sounds. This interpretation is better now, since my brain has already learned one time from my first CI. I can actually understand speech, although I have to utilize my lip reading skills to pull that off Smilefjes I know that given time, it will improve, and I’m not at all stressed about that Smilefjes

How do I train this new ear?

interval-training1Not much conscious training yet. I’m just trying to find my level of comfort, and to find my balance, both in my body (head) as well as in my energy levels.

I have them on as much as possible, but take it off when I need a break. Volume has been turned down on both, and I understand speech better, even then, so that is very much a promising sign to me.

When things get better, I will start working on this new ear by itself, in order to get it faster up to speed with the first ear.

How am I doing overall?

I have had one good day so far, where I felt better, in terms of energy and not being overwhelmed. That was yesterday. I then did a lot of stuff (you know, things are waiting for me Smilefjes ), and have the feeling of having to pay for it today Trist fjes But that is a good notion, thinking of it, I had my first OK day yesterday (being bilateral, that is) Smilefjes

Tinnitus is still there. And on my new ear it is shouting through a new channel when I turn off the sound. But it was like that with first ear too, and it calmed down. While I have sound on, with both ears, tinnitus is much less of an issue now. The stereo-sound is masking the tinnitus fairly well.

If I get tired or agitated, it comes back full force almost instantly.

pain-ear-1Some pain in both ears from time to time. But the pains are mild, more like a reminder of how the pain from surgery used to be. Could it be some kind of reverse psychosomatic thing?

Stress level is fairly high, given the fact that I stress with being weak and not able to support my family the way I wish I could. I use some mental energy to tell myself that it’s not something I can do something about, really, and don’t feel guilty about it. Emotions and logic don’t always follow… But I have made myself my own therapist now. I know the mental pitfalls, and I know the right questions, and I get the right answers rather quick…

One for the philosophical corner…

I ask myself this question these days: am I very good at being sick and fatigued? Can that be a pitfall in itself? By being good at coping with hardships, have I forgotten how to handle myself and life when things go well?

Bridge over troubled waters?

long_stone_bridge_over_water-wideThe bridge? She is my wife Smilefjes  She is patiently awaiting my return to the “living”, taking good care of our kids and us all.

Mette, you have my eternal gratitude and outmost respect for the way you have overcome the hard nights and busy days with me going on 20-30% engine!!! I love you!

poweroflove

Posted in deaf. 4 Comments »

4 Responses to “Bridge over troubled waters – 6th day CI activation”

  1. cem4881 Says:

    This is the first time reading your blog, Ulf! Thank you for sharing your experiences. It’s the good writing that informs the public what this ‘invisible’ disability is all about!

    • laura jakubowski` Says:

      hello this is my first time reading this blog. i have met many americans and uk ci users but none from norway! i have a ci in my left ear. i cant go bilieratal because my right ears screwed from infection and so many explorotry ops! i had a ci in that ear but it had to come out because of the infection. my surgeon tried v hard to save it thought but the infection was just too bad. i was reimplanted with the left ear 3 months after that when iwas 15 but its always good to read other peoples experenices

  2. christian Says:

    I have been reading more and more of what you have been through you and your wife are amazing.
    My partner has been liveing in a very dark place for the last 2 years.
    She lost all her hearing in april 2010 and with that came the tinnitus it was so strong that she tought her head was
    going to explode.On a good day it was like a house alarm in both ears.
    We have battaled so hard.

  3. laura Says:

    hello i stumbled upon your blog through another ci friends the tinnitus will be slight when you have your ci on and it may be more promident whenyou take it off i have had a ci for 17 yrs and i still get tinntius when i dont have ci on. balance will get better as time goes on. not for me though coz i have a mito condition which conributes towards that i look forward to seeing what else you can hear with your amazing ci🙂


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