Nedsatt hørsel? Sliten? Kurstilbud

Nasjonalt senter for hørsel og psykisk helse arrangerer mestringskurs for deg med nedsatt hørsel. Oppstart januar 2013.

Nedsatt hørsel innebærer for mange en kontinuerlig kompenseringsinnsats. Du må kompensere mentalt for den informasjonen du mister, du kompenserer for muskulære anstrengelser i nakke og skulder, for nedsatt balanse, du bruker energi på å lokalisere hvor lyder kommer fra osv. Stress og følelse av utmattelse forekommer ofte i kjølvannet av nedsatt hørsel.

I forbindelse med doktorgradsprosjektet “Mestring av psykososialt stress ved hørselstap” har vi utarbeidet en kurspakke basert på kognitiv terapi og erfaringer vi har samlet fra hørselshemmede gjennom studien.

Dersom du er interessert, nysgjerrig på dette kurset – eller kjenner noen kurset kunne være aktuelt for, nærmere informasjon:
Sidsel Haaberg, tlf. 22 92 35 02/951 57 782
Maj Volden, tlf. 916 20 315
Jenny Meling Hansen, tlf. 941 54 472

Kurset koster egenandel (for tiden 307,-) pr. samling – opp til frikortsgrensen.

Se for øvrig: her.

Shy? Investigating social phobia…

Social-Phobia Social phobia, also know as social anxiety, is the third largest psychological problem in the world today… This diagnosis has a higher representation among people with hearing difficulties (and other populations segments), than in the average population. This site offers more information: http://www.socialphobia.org/

Background: Katharine Cecilia Peterson (Kate for short, brief presentation further down) has asked me (and others) to join her as a co-therapist for a research project looking into social phobia and the effects of cognitive therapy.

social_phobiaDisclaimer/personal experience: I can not claim expert clinical knowledge regarding social phobia, other than that I have experienced it on my own. To what degree I experienced social phobia is also a subjective matter. Also I am not an expert on cognitive therapy either, other than that of my own experience with such therapy, and it’s effect, regarding my tinnitus (reference to earlier blog posts relating to this matter: No cure for tinnitus, Life gets easier, Difference btw recruitment and tinnitus, Tinnitus cognitive therapy) I was open minded about the cognitive therapy approach, and did all the training by myself, in addition I had three hour long sessions with a professional advisor.

The text after the double line has been copied, translated and adapted from http://katharinececiliapeterson.wordpress.com/ , she writes her blog in Norwegian.

She is a psychologist, and has been a valuable contact for me personally through the years, since I have met her on various occasions/courses, and she works at the place where I received psychological therapy: Nasjonalt Senter for Hørsel og Psykisk Helse. She played a small part (HUGE gratitude on my part!) for my mental wellbeing today, as she helped me get in touch with the right people when I needed it the most. Currently she is heading a research project I will write more about in the time to come (since I am a part of the project, obviously)

Ok, let’s get down to the business at hand 🙂

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What happened with the “recruitment”?

I got this question from a reader (Candy):

Kim’s post send me here, and I really like your post.  What gets me amazed is that I do have that problem some of the time and I never knew there was a word for it!  😉
Do you have implants now? and, if so, does it helps get rid of recruitment?  If it does, then it would be a good reason for me to get it and stop procrastinating!  😉

Instead of answering Candy directly, I think everybody who has read my original post about the phenomenon called “recruitment”, also deserves to see my response:

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Unrealistic Expectations from the World? Audism?

What do people expect from me? They expect me to participate in social activities and to be part of the “common consciousness”. That is a fair expectation in my opinion. In this blog post I want to take a look at some circumstances and  obstacles concerning these expectations. I think it will be wise to read the definition of some of the words I use, they are Prayer-no-expectationlinked, as the word “expectation” was just linked.. That way we will be on the “same page”.

In this aspect I am thinking about what we expect and when we expect it in terms of my hearing progress. This is also a sore and difficult point on my behalf, since it is much about social interaction and how I am perceived socially. How I am viewed as a person.

As I’m going the path of CI rehabilitation and re-learning to hear, I am doing some discoveries about expectations of my recovery from both myself and others near and dear.

Me, a social outsider

All my life I’ve been a part of the hearing world, and thus a social outsider. Even among my closest friends and family, I got and still get, remarks and comments that hurt to the core of my being. I’m sometimes left with a feeling that people suspect me of WANTING to be isolated or withdrawn from issues that are talked about. I often feel misunderstood and misinterpreted. For instance my withdrawal from social events is sometimes being interpreted as a lack of interest, or attempt to socialize. That is so unfair and sad. I’ll explain why…

The more people talking at the same time, the more impossible it is for me to interact in a meaningful way. Believe me when I say I really wish I was able to interact with others on their terms, but there is a huge damage in my hearing that makes that incredibly hard. There is a limit to everyone’s mental capacity and endurance. My limit is shorter than most in terms of social interaction due to the nature of listening and understanding.

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CI-activation log no. 4 – day 5 – Initial shakedown

Wow, what a week! I’m very tired now, but need to put some impressions onto writing…

Have already had many CI-moments, here are the ones I remember now:

  • the dogs at my mom; when they walk on the hardwood floor they give off a ticking sound for every step. I can detect them moving with sound only!
  • I can detect the chorus in rock songs that I know well; like “Girls, girls, girls” by Mötley Crüe (I also hear the motorcycle revving in the beginning!)
  • I detect my son singing in the car while the window is open
  • Jingling of my key-chain
  • I hear mobile phones ringing in TV-shows (never heard that before, ever!)
  • I could detect my sons heavy breathing in the car (he had just been running, racing me to see how far he can get from the garage before I catch up with him, I have to wait for the gate to open first)
  • I detect the difference between –s and –sh

I10-85-cochlea2 All sounds are very thin, high pitchy. That is due to the fact that my hearing residue before the operation all were located in the innermost curves of my cochlea. (from 1500 Hz to 200 Hz in the diagram on the left) That’s where the bass is. The entire frequency range that my hearing aids could amplify, and the vibrations the hair cells were able to pick up, were dealt with by the hair cells in that that innermost curve. (Because of the limited number of remaining hair cells in the outermost areas, I experienced recruitment.)
Now, all those frequencies go to the previously almost dead outer areas of my cochlea (20 000 Hz to 1500 Hz). Which used to be the medium and high pitch range of sound vibrations were picked up by hair cells. Because of this radical relocation of sound information in my cochlea, my brain has to rewire all the frequencies through neurons forming new permanent pathways to the old brain-recipients cells who did the actual “hearing”. Until that rewiring has completed, it will continue to sound high pitched and heliumish.

I wonder if the brain would be able to do the job by itself without the aid of any other senses? Now I’m telling my brain what sounds should go in there when I drive the car, or listen to that rock music, or hear my sons voice. Because I SEE the sounds. But what if I did not see anything, just had to figure out the sounds? I’m thinking my brain probably works both ways, some sounds it’s rewiring by itself, some are helped by my thoughts… Anyone with insight into how this process might work?

As I stated in the beginning, I’m really tired! Today I had a 4 – 5 hour period where I did nothing active… (very unusual for me) Last night my son snuck into my bed behind my back without me noticing it before it was too late (he had fallen asleep). That’s never happened before. Usually I have a very sharp sense of sight, detecting any movement very fast.

All kids are really great about my CI. They fancy the magnet and think it’s way cool 🙂

The first 3 days of my CI-life, I suspect I was high on adrenaline. Everything seemed more crisp and sharp. Now I’m almost like I was before I got activated. Dead tired, numb in my bran (just not as “muddy”) and with some psychological reactions, especially very sensitive to any stress, which gives me this tremendous tinnitus again, only now it’s in both ears, and it’s has changed quality in my implanted ear… more low frequency than before, or it’s just my brain who has already started rewiring? Where does the tinnitus come from? Auditory hair cells in cochlea who are trapped in an eternal death scream, or is it from my brain which screams for those frequencies, and when it gets nothing it creates it by it’s own?

I have been avoiding the issue of tinnitus, partly because it’s has been my strategy, to ignore it away and to death, and that has worked quite well… If the tinnitus thing continues now after the CI-implant, I will have to read up on the issue… And I’m afraid the tinnitus on my left ear will take over the job since my right ear now gets plentiful of audio information….

I listen to TV-shows and movies with both the CI and the hearing aid most of the time, sometimes I turn off my hearing aid for a while. While I drive the car I only use CI, since I get too much recruitment from the hearing aid ear. While I’m walking around in shops, ore doing daily chores, I use only CI.

I need the hearing aid to communicate to everybody.

CI-activation log no. 2 – day 1 and 2 – 1st auditory self assessment

These values that I test on myself are values based on this resource: http://www.phys.unsw.edu.au/jw/hearing.html
The scores are from the chart on that page.

The sound-level on my laptop HP HDX18 will be set to the value of 74 every time I do this test. My CI’s volume wheel is set to exact the middle position (turning all the way down reduces sound volume by 20% and turning up increases 50%!). Then I have the same test-settings every time. “Wire” means that I use a direct connection between the computers jack-plug-outlet and my Advanced Bionics processor. No sound pollution possible.

Every level of registration is a notion of sound. That means that I do not necessarily detect the difference in tone/frequency. Green is where I hear the sound (yet so far all the sounds sound mostly the same, i.e.. a very thin squeaking tone or beeep), red is only a short beep, blip, bip or ding.

( I can hear  violin of my own breath, broken glass of paper being crumbled and a ding every time one of my fingers hit a key on the keyboard!)

If anyone know of more sound-test or sound-generating resources on the internet, I’d be grateful for any tips!

Date of test: 07.09.2009 (1,5 and 6 kHz is the frequencies of my tinnitus, hard to hear the test-tone)

Program 1. (stronger low pitch, weaker high pitch, 120)

Freq. 30 Hz 45 Hz 60 Hz 90Hz 125 Hz 187 Hz 250 Hz 375 Hz 500 Hz 750 Hz 1 kHz 1,5kHz 2 kHz 3 kHz 4 kHz 6 kHz 8 kHz 12kHz 16kHz
No wire -9 -6 -9 -9 -18 30 -27 -42 -45 -51 -48 -27 -48 -48 -45 -27 -42 -6 -3
Wire -27 -24 -30 -21 -15 -57 -66 -75 -84 -75 -78 -63 -54 -78 -72 -72 -69 -27 -27
08.09.09 -21 -30 -27 -24 -18 -60 -69 -75 -81 -75 -72 -60 -57 -78 -75 -63 -63 -27 -27

Program 2. (Flat profile, 16 electrodes)

Freq. 30 Hz 45 Hz 60 Hz 90Hz 125 Hz 187 Hz 250 Hz 375 Hz 500 Hz 750 Hz 1 kHz 1,5kHz 2 kHz 3 kHz 4 kHz 6 kHz 8 kHz 12kHz 16kHz
No wire -6 -3 -6 -6 -18 -27 -21 -33 -42 -42 -42 -30 -36 -36 -39 -36 -42 -6 -6
Wire 0 0 0 -6 -6 -51 -69 -75 -75 -75 -72 -60 -60 -60 -63 -51 -54 -27 -27

Program 3. (Flat profile, 120)

Freq. 30 Hz 45 Hz 60 Hz 90Hz 125 Hz 187 Hz 250 Hz 375 Hz 500 Hz 750 Hz 1 kHz 1,5kHz 2 kHz 3 kHz 4 kHz 6 kHz 8 kHz 12kHz 16kHz
No wire -6 -6 -6 -6 -12 -27 -21 -36 -39 -42 -45 -30 -27 -39 -54 -36 -42 -9 -9
Wire

CI-activation log no. 1 – day1 1st impressions

OK, finally activated!I’m only one hour into my CI-era, and I sit at a hospital canteen-table next to my good girl, Mette. Her hand is lying warm on my thigh, relaxing me.

I start off very easy, all my sound settings on the Advanced Boinics computer programme “Soundwave” are set at the bottom. It seems I’m able to pick up auditory nerve signals very good. Meaning that I’m sensitive to them. That’s a good omen in my book.

I’m very conservative in terms of setting the sound too loud, many thanks to Abbie who wrote a post about overdoing that part meaning to be offensive. It ended up with her getting an overload.

But in the 15 minutes from my audiophysicist said that now was the time for my first venture out in the audioworld with my new cyborg ear, I discovered that I had maxed out the volume already. So before we went out the door, he made a second programme with an overall higher volume. I have now had that programme on and the volume wheel has been cranked to max. Looking forward to get back to adjusting in more details at noon today (45 minutes from now 🙂  ).

Will be exciting to see if all frequencies are just as good, or if some frequencies will need more/less amplification.

Sounds I get now is just morse-code. It literally sounds like morse code. My own voice is like bip-bip-beep-bip-beep-beep.
Sounds I have received as morse code so far are voices. My own voice, Mettes voice, and the audio physicists voice, and faintly other peoples voices. Cars, trucks, trams and buses don’t give me any sound sensation through my auditory nerves. When I closed my eyes I could sense the sound of the powerful sit-on-top-drive-like-a-car lawn-mower 10 meters away through the air-vibrations hitting my body… No auditory response there.

I had my first-CI-moment: I detected the sound of my own shoes! It came through like this beep – – – beep – – – beep…..  I stomped my feet, and yes, there it was; beepp — beepp.

It’s a strange sensation, it’s almost like a submarine sonar giving off it’s ping sound: PING! ——  (and the weaker echo comes back: bip). Feel like I hear what’s NOT there instead of hearing the actual sound… I know intellectually that it’s my brain trying to make sense of the input, but I have a need to express these sensation in words, I want to remember them and share them…

I found other CI-users  explanations and variations in sound sensations very interesting. And because I read them, I have been very well prepared today. I’m not afraid, I’m just curious on how my adventure will turn out to be, and I enjoy every new discovery, such as the beep-beep of the chairs being moved here in the canteen. I had morsecode telling me that some sound was being emitted, and I looked up at the guys at the next table  and they were laughing loud.

Yes, my CI is already doing me a service. It can tell me that there are sounds out there.

The tinnitus is roaring constantly, but the morse-code is louder.

I’m tired already, every bip-beep makes me feel slightly nauseous, on the verge of making me dizzy. Think I’m doing pretty well so far. Beeps come in from all sorts of sources, and I detect the beeps and bips.

Time to give myself a little break.

Oh, what to write? Or not to write?

Did I get it or not? Wait! Don’t cheat by reading down just yet! Follow letter by letter!

I smirk, a little curve on my lips, a little smile, a little bigger smile, a smile, a bigger smile, even bigger smile, huge smile, A BIG GRIN!  😀

I GOT CI!!!! YES!!!!

I have to tell you, it was such a relief to get that message from the doctor, and the way he did it is a story in itself 🙂

surgeon We sat down around a table, after the initial handshakes, and even before I got the chance to sit down properly, he just said, “we will offer you CI”. NICE :-D  No tact, and no time to get really nervous or to start wonder what the answer would be…  Well, needless to say, that was a major moment for me! 🙂 It took two seconds for me to look into his face to look for any sign of a joke or a countersignal, but he was sincere and dead serious. Then the understanding reached my cortex… It was like detonating an emotional nuclear device 🙂

gratitude My girlfriend sat next to me, and I had to hide in her lap a few moments while I gathered myself to continue the conversation. It was such a relief. Almost 4 years of waiting was finally over in that moment.

As we took up the conversation again, they quickly discovered that I knew everything they were going to say. But, we have to follow protocol, and they needed to say all the necessary things…

I was told all the standard warnings about the procedure being close to the facial and taste-nerves, that not everything might go as planned and that I should be ready for a less than good result etc etc.

476S_AdvancedBionicsHiResAuria Then they wanted to talk about choosing the device, either MED EL, Freedom or AB. I quickly told them that I made my choice long time ago, and they were thrilled and we all had a good laugh. We went through the various features anyway, just to make sure I had all the facts. I have a feeling they don’t usually get patients that know as much as I do about this subject… But, informed as I already am, I had absolutely no doubts in my mind. I’m going for Advanced Bionics, and I also chose the color, Dark Sienna. It’s the device I waited another extra year for. I could have been here with a Freedom or MED EL today, but I have from quite early in my process known that Advanced Bionics was the CI I want. Abby pretty much sums it up for us all here.

Surgery date has not been hammered yet, but it should be around the 22-24th of July. Not idealistic concerning our holiday, but, hey, I’ve been waiting for this for so long, and I’m not waiting a day more unless I have to! Also, my girlfriend wants to be with me during the whole ordeal, and what better time than during our holiday for this? 🙂

I’m a very, very, very lucky man!

2008-06-30-homeless My thoughts now goes to those who are not so fortunate. I want all of you who read this to join me in a moment of contemplation: Think of all those individuals that live on our planet under less privileged conditions and has no idea that CI even exists! And think of all those who knows about this, but has no government to provide the proper healthcare or who cannot afford a proper health insurance coverage… It’s such a shame the world is so unfair!

I know all too well how it is for you, what you struggle with and I wish something could be could done about this for everyone…

I hereby pledge that I will honor those less fortunate by being the best person and human being I can be, and to advocate for CI for children and late deafened adults.

The rings of Saturn – simultaneous bilateral CI-surgery?

The Sahara desert, where I was recently, is like a window to the universe. P4150567I was excited to be able to see Saturn with my very own eyes through a telescope.  Fantastic! Just like the picture above.

The thought just came to me; In space there is no sound. Sound carries through air. No air in space, hence no sound.

Which brings me to this: I’ve been thinking about getting simultaneous bilateral CI-surgery, and how that would be for a few weeks… Living with absolutely no sound…

I’m sure the hospital won’t do it based on my request alone. Do I want to do it if I could? For the sake of my recovery, I want both my ears to be done with. I want to do both surgeries in one session. My only concern would be my son in the silent weeks before sound activation. I would be able to communicate though, I can read his lips pretty decent… It would just be a little slow…

I’m thinking my brain and recovery would benefit from doing both surgeries, both activations, and training both ears equally. Both my ears are very similarly damaged.

I have a feeling the hospital’s policy (for several reasons) is one ear at a time. If that’s the case, I’m pondering wether it’s worth pursuing the prospect of having both ears done simultaneously… (I risk pissing them off, you know…)

For that to be feasible, I would need help from a lawyer, which I think I have through HLF. I would have several arguments, one of them being economical. Other arguments would be the time aspect of going through two single operations that would take 1 – 2 years extra depending on the waiting time… I’m not keen on waiting anymore…

Anyone have opinions on simultaneous bilateral CI-surgeries or experienced simultaneous CI-surgery? I’d be happy to hear from you….

Captioned video of me on national news 27.02.2008

Having trouble embedding Overstream into wordpress…

Pls follow this link:

http://www.overstream.net/swf/player/oplx?oid=toliustbimmh&noplay=1

Sudoku vs. cognition

What in the world could the term Cognition have to do with Sudoku? Well, let me explain…

For a Sudoku to be solved, you need to be able to learn, reason and remember numbers. Most of which has to do with the term “cognition” (click the word above for a precise terminology).

I learned about my own cognitive condition from doing a lot of Sudoku the past years. For instance I learned that having poor sleeping over longer periods made my Sudoku solving ability very poor. Also if I was plainly tired from a long day, my Sudoku skills suffered. Other things that made Sudoku hard for me to solve was the (for the time being) ever present fatigue, tinnitus and level of blood sugar.

After I became quite skilled in Sudoku, I recognized variations in my own mental performance. And soon it became apparent to me that my mental performance also followed certain patterns. And this is the interesting part that made me want to share this with my readers.

Sudoku taught me when I was tired in a time where I was always tired, if that makes sense??? It’s the fatigue-thing I’m talking about… How did THAT help me? Well, there was variations of tiredness over time. Some days I just couldn’t remember from 5 minutes earlier, or I had trouble concentrating on the task at hand (I have a special routine for solving them). And since I was all about getting better, noticing the good or bad days for Sudoku gave me an external method of measurement of my mental state in a period where my own built-in sensor needed calibration, so to speak 🙂

Sudoku taught me how to trust and USE my own sense of tiredness again. The feeling of tiredness is a signal to ourselves to slow down, to take a break, to eat and drink, to sleep or take a nap and so on…

Yes, I was truly f***ed up, I had lost the ability to heed the signals my own body and mind gave me… Sudoku helped me almost in a scientific way to regain that.

I continue to do Sudoku, allthough not as much as I used to, but it is still a fine tool for measuring my own cognitive skills. And I can recommend Sudoku to everyone as mental training. It has been and continues to be useful to me, not only as a tool for mental measurement but also as hobby that trains my cognitive skills somewhat… And we all could do with better brains, right?

A Christmas wishlist for any CI-candidate

All these books would be nice to sift through….

Also I found that a medical journal published 6 times a year by Lippincott Williams & Wilkins, called “Ear and Hearing”. They have plenty of very interesting online articles available to subscribers, abridged if youre a guest…

Same publishing house offers The Laryngoscope.

All this is a bit expensive for me at the moment, but I will keep searching….

If any of my readers have tips for websites or publications concerning CI, please let me know, I will collect and publish everything I come across…
For the time being I will focus on what interests me spesifically;

  • simultaneous bilateral vs unilateral CI,
  • CI in adults and
  • all research data and latest scientific breakthroughs…

Fatigue epiphany

epiphany

Just back from a session with my psychologist, where I dealt with the matter of fatigue. I learned something new about myself, and I guess this knowledge could be useful to many who are hard of hearing or near-deaf.

The state of fatigue is the subject that I want to raise here. Of course fatigue can have many reasons, both external, internal, material and spiritual. I want to discuss the mental aspect of it that became very clear to me today: When I get the notion in myself, that I’m tired, it starts a whole range of other reactions:

Emotions:

  • anxiety (am I sick, is something wrong with me?)
  • stress (what did I do to become so tired??? why is this happening?)
  • sadness (the feeling of fatigue sort of disables me from being energetic, joyful and contributing to my surroundings)
  • hopelessness (damn, is this how my life has become? Is this how I’m supposed to live my life???)
  • and many more… (it is a little chaos of mixed emotions)

The emotions manifests into:

  • Stomach feels like a brick, hard and heavy
  • Neck becomes stiff
  • Sensations of pain are more prone (backache, headache, muscle and tendons)
  • A constant state of emergency (to put it short)

Last week, when I spoke with my incredifaboulofantastic girlfriend about this subject, we agreed that when I have the notion of being tired, I should simply say; “I need a break”.

This was the genius of it: instead of saying that:

“Oh, I am tired, I need to go by myself and be more tired” (thus pushing myself even further into the mental state of fatigue),

I can say, “Oh, my senses had a handful, they need a little rest, and then I’ll be fine again”.

By digging into the notion of fatigue, and really FEELING the weight of the emotions, I have also become more aware of what is happening to me in terms of thoughts, reactions and the results of those… This way; I can make a difference in myself by avoiding chains of thoughts that give me negative emotions and drain me even further of the precious energy I need to cope with the present situation of being near-deaf…

I hope this means something to someone, because it was an epiphany to me!

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CI nagging round 3

After new rounds with both Rikshospitalet and Haukeland I have reached a decision. Rikshospitalet asked if I was willing to be operated at Haukeland within 6 – 12 months. For several reasons, I declined to that very tempting offer. Given my situation, I need a solution quick, but Haukeland could not meet my first priority demand. And that is to get the Advanced Bionics Implant (see link in my Blogroll on the right side of this Blog). Apparently Haukeland only offers the Austrian “MedEl” or the Australian “Cochlear”, while Rikshospitalet also has recently started offering Advanced Bionics to their patients.

To me the prospect of (among many other advantages and future possibilities) being able to listen to music with 120 frequency bands as opposed to the “regular” 22 frequency bands the number one reason. Other reasons to decline the offer on going to Haukeland and get the thing done ASAP is the fact that all follow-up afterwards has to happen in Bergen where Haukeland is situated. Being the proud father of  a 7 year old boy, that will present some practical problems during that period of up to one year.

I got in touch with the right people at Rikshospitalet, finally, and I even spoke to them face to face in their office, so now I know who to contact, where to visit them and the communications has been established and a lot of uncertainty has been eliminated.

Now I know a lot more about the future years. I am currently at abouth the 100th person on the list to be operated, and Rikshospitalet operates about 2 patients a week. I will have to be patient (pun intended 🙂  ).

At the time I managed to establish communications witht the right people at Rikshopitalet; I also had found out about a government-funded foundation that has been established to finance people (like myself) who could be working, but needs healthcare-services today rather than later. The Foundation is called “Raskere i jobb” (“Faster back to work”) and hasn’t been fully implementet as of yet. It’s a current ongoing process of setting up rules for the foundation as well as getting the funds released to the various hospitals. I don’t think the money can be used in a foreign country, but maybe??? I will have to investigate more and get back to that.

I asked Rikshospitalet that they considered my name in regards to those extraordinary funds, and that I also be considered for a simultanous bilateral (on both ears at the same time) CI-operation. I will write more about the 1 versus 2 CI-implants at a later time and why I’m willing to do it. They have answered and told me they will get back to me.

I expect to have to fight for getting bilateral CI-implants as the consensus today is to operate only one implant at the time. Bilateral CI-implants has only been given as part of research to understant the difference between unilateral and bilateral CI-implants. I have yet to se any real scientific works about that subject, but as a hearing-aid user, I frequently had to turn off one of mye hearing aids, making me an temporarily unilateral hearing aid user being deaf on the other ear. I KNOW THE DIFFERENCE and I will advocate that difference even through my lawyer at HLF Norway if need be! (she is a lawyer for all hard-of-hearing and near-deaf in Norway)

CI-nagging round 2 (actually it’s more like round 5 or 6)

OK, the health care bureaucracy in Norway is fucked up in many ways. I have to live with that, and I have to deal with it.

SO, the premier hospital in Norway, Rikshospitalet, did not reply for my 5 or 6 first e-mails. Now finally I got a name and an e-mail-address that I can “hammer”. Maybe I will get some more info soon. Nevertheless Rikshospitalet have many who needs CI-operations on their waiting list. This results in a long waiting time, up to 3 years. This is a seriously long time for me at the moment. The perspective is unbearable. I don’t even want to start thinking about what I have to fight in order to get the second CI-operation.

Then I talked to a lawyer at HLF who works with these issues in order to put pressure on the funding  governments. She informed me that another hospital in Norway have a waiting time of “only” one year. This is Haukeland in Bergen.

So, I’m thinking, well, I have more than enough time, so why not give it a try, see what comes out of it.

The procedure then is that I have to go back to my personal physician, ask for a new requisition to a specialist at a hospital where I live (AHUS), and then get yet another requisition at AHUS to the CI-operation itself at Haukeland Hospital. Then I have to wait for Haukeland to reply to me and so forth.

Sidenote: All this Kafka-like bureaucratic back and forth drives me nuts! All that wasted manpower, resources and time! Jeez! Rikshospitalet has a HUGE file with my name on since I’ve been a patient there since childhood. They KNOW how bad my hearing is, they KNOW the pretext of my condition. Yet the system needs all this paperwork, these other specialist to say that, yes, your condition qualifies for a CI-operation etc. etc. This is one aspect of what is wrong with the Norwegian health care system. It is way too bureaucratic and complex. It has become a “bureaucracy-for-bureaucracy’s-sake-institution”.

AHUS (Akershus Universitets Sykehus) managed to loose my first requisition to the specialist in order to get the first requisition to Rikshospitalet. After my nagging they “found it at the bottom of the pile of requisition applications”.

AHUS then managed to loose my second requisition to the specialist in order to get a new requisition to Haukeland. I had to get my personal physician to re-send it. (and they always use a messenger who deliver it personally to the staff at the right department at AHUS!!!)

(why do they need to do another examination of me to give me an exact replica of the first requisition only to another hospital???)

Haukeland hospital has answered every one of my e-mails and in that aspect they appeal to me. But for me ultimately the technology and the medical skills is the most important. I don’t want my hearing to be fucked with by a newbie. It’s too important to me to be blatant about who does it and what CI-device I end up with….

I have fears that me playing on two horses; namely Rikshospitalet and Haukeland might give me troubles later on. In Norway we have a right to choose hospital, but I don’t know if they are collaborating the waiting list at the two hospitals….. And what would happen if….. and so on… I can go mad going down that road…..

A long posting… sorry about that, but this one was long overdue, I had a lot of catching up to do concerning this aspect of my life…..

I’ll stop now 🙂

Hard to understand?

I just read some of my former posts…  And one thing suddenly occurred to me as a difficult thing to understand; the fact that I get tired of what could be best described as faint noises… How is that possible when I’m so hard of hearing and next to deaf?

Well, the explanation is that the hearing aids I use are tuned to it’s maximum, perhaps a little over the top too…. For me a tractor working on a field a couple of hundred meters away from where I sit is audible (and annoying). The refrigerator has been mentioned. I pull out my hearing aids and listen to the tinnitus instead, it is less tiring actually.
All the faint sounds represent sound pollution to me. Since I need to rest (my hearing) when I’m not communicating verbally or when I have the (nowadays) occasional music listening experience, those faint sounds becomes obsolete sounds. That is by definition noise, to me.

My brain constantly seeks better understanding of the sounds it receives, and thus drains my resources constantly. That is how it must be. But when almost all the hearing has gone, the brains tries to compensate by working harder. My eyes (aka curiosity) seek out visual confirmation of the audio-signals the brain receives.

The hearing aids are designed to enhance ANY sound it receives. It has no way of making a distinction between noise and needed sounds. THIS fact causes overload on my hearing organ and my brain, since this is a constant condition.

The brain is the most fascinating organ in our body, as it is able to compensate and change during our lifetime. Loss of hearing causes other senses to kick in stronger, and when sound is still present, the brain will obviously continue to make the most of it.

The problem presents itself when I, as a human being, are met, and lives with demands that is contradictory to the auditory loss. Add the strains of everyday life in terms of stress, work, rush hours, information overload etc etc, and you have the recipe for a brain blackout if one is not aware of the danger of it.

Plus, I have to work extra hard to communicate with everyone around me. In that I have no choice. It is not an option to isolate myself from the real world where people I love and care for are. If I do that I am certain that depression and darker days will follow. That makes things worse.

Yogatrial

Learning a little yoga-exercises these days. They are very interesting in the way they affect me. I am using several exercises, and one is for the ears. The fun thing is that my ears feel warm after the exercise! I will continue for a few weeks in order to give it time to “work”. I have faith that the yoga-exercises actually could benefit my general health and stamina-situation…

I have hopes it works against the tinnitus, and that some of the other exercises will help me regain more strength that is so desperately needed…

Again I have to give my heartfelt thanks to my great girlfriend for sharing her knowledge in the eastern way of life….   Thanks honey!!!!

Tiny update

I’m doing good now. The tinnitus is not troubling me. I have been able to “think” it away. It seems like every time I think: “ah, nice that the tinnitus isn’t bothering me…” it reappears….  That’s something to think about…  It’s all in my head!

Sleep has never been better. Even when changing time I go to bed, falling asleep seems easy these days, and I sleep generally more than I have in many years… Hope this is a sign of healing of some sort…

As for my hearing…. It’s worse than ever, of course….  My awareness is hightened, and I notice more and more arenas where I can tell my hearing is significantly weaker compared to earlier experiences….  I guess it’s both good and bad. Good to be aware, bad that hearing is fading noticeably….  Makes me feel stress about the whole CI-process with the hospital… Still no response to my 3 requests for a response…. Right now ANY response would be appreciated….

So….  My plan for the summer is to take things easy, be with my great girlfriend, my son and my family.

Hope you all will have a great summer… (it’s raining and raining here in Norway, but it doesn’t bothers me, I kinda like it…)

Tinnitus, fatigue and mentality

Schorching hot days was bliss, and an experience. Up here in the northernmost part of Europe we’re not used to temperatures up to 30 – 35 centigrades. Fatigue becomes more prone, and in that persepective I learned that being more tired makes it easier to fall asleep even though the tinnitus is having a field day in my hearing-organs…

So it is a paradox; in order to feel like I sleep relatively well, I have to be really tired before going to bed. If I’m not really tired, well, then I can expect a rough night. So in the end it all becomes even… A steady state of tiredness. And that’s nmothing new to me. I’ve been really tired and never really rested and fresh the last 5 to 10 years…

This represents a challenge in itself. How do I know when my batteries are getting charged in the long term? I know being tired so well, that it has become my normal state.

I’ve spent the last months really feeling. Feeling about the tiredness, how a good night affects me, how everything affects me, even the food I eat. I would think I need to do more of that feeling in the months to come. Get to know myself.

Good thing is that the summer is here, my super girlfriend is about to complete her exams, and I can take her home and have her closer on a permanent basis. Being in a long-distance relationship has also been straining me at times, but not near as much as having a girlfriend like mine have given me more power and strenght to still endure….

This note will probably be followd by another note in july sometime if I don’t find time to file another report while being on the road… I’m going on vacation coming this monday, and wish all my readers a great summer until next time!!!  Keep reading, it encourages me!

Change of mindset

After the conclusion was reached, and the first step taken, about taking care of myself and my son in the first hand. I haven’t seen big changes in my life in general, things still go an as they have the last few years, and I don’t feel like I’m in a void or anthing like that…

But, my mindset probably has changed, in the way that I think about how to spend my days.  I will be more around my friends and family, when I feel I have the energy for it… Instead of using my much needed energy to run around in pointless meetings in the bureaucratic system.

I will definitely write more. Maybe it all will result in a book? Who knows 🙂 I will seek out more of my creative ways that I know I have in me, that have never been let out very much before…

I will spend more time outdoor, especially when the weather shows its nice side. And speaking of outdoor-life, I will be a lot at our new Swedish countryside mini-farm, tending the place. Swimming in the lake, fishing, boating, walking, driving around in the old farm-tractor 🙂 plowing old fields, turning them into grass-fields and a nice garden.

And in all this, my hope is that I get more energy for myself, my son and my beautiful girlfriend. Life is about the people in my life. I need to be able to care for them.

Let’s hope the hospital answers my nagging soon…