Pinch me! Slap me! Am i Dreaming?

I just got the long awaited letter from the CI-team at Rikshospitalet! YES!

Finally!

(read on below   )

The long wait is over, and I can now start to look forward to the beginning of the process of becoming a candidate for CI! (sounds like I’m running for the presidency, and in many ways it feels that way too! THIS IS BIG!)

Phase one of the pre-screening, pre-qualification process starts april 28. THIS YEAR!

Then followed by phase 2, which in turn should end up in me being qualified for the procedure AND A NEW CHANCE TO HEAR AGAIN!

I have to tell you, I started crying when I realized what the letter said… It was a good cry!!!  I’m so happy it just happened to be a day when my girlfriend was with me. It was a day to remember, indeed! Thank you, my dear, for being with me and sharing that mammoth moment with me!!!

I love you, my love!

 

I needed to share this with the world today!

I want to thank everybody who is reading my blog for all the support, comments, insights and INSPIRATION you provide me! Abby, Jennifer, Jeff, Sam, Roberta, Arnt, and many, many others, you know who you are!

And to everybody close to me in my everyday life, thank you for being patient with me and supporting me throug this!

Since 2006 I’ve known this day would come, but I still can’t quite comprehend it. I’m in a mild state of shock, I guess

HAVE A GREAT DAY EVERYBODY!

Norwegian Deaf and HoH asks for SMS to emergency services

Recently some larger news-services (VG) in Norway has picked up on this story:

The Norwegian Association for Deaf has started a campaign in order to make the Emergency services available to deaf and hard of hearing via SMS. Like it is now, it is NOT POSSIBLE TO SEND SMS TO EMERGENCY NUMBERS IN NORWAY!

Apparently Sweden, Denmark and Iceland all have SMS to emergency services.

See informational video on www.deafnet.no

Here is a captioned (Norwegian) video from Bergen about a deaf man who could not get contact with emergency services when his boat caught fire. They mention the project in Sweden which supposedly will be permanent.

Question to my readers:

Does 911 in the US have this kind of service to deaf?
What about other countries?

I’d like to know, because I travel a bit from time to time…

 

Thanks to Ann Kristin for making me aware of this.

Status update IV – early autumn 2008 – epilogue

You people must become fed up with all these “Status update”-posts, no?
After this rather long and 5-way split Status update, I realized there are some other health issues that needed addressing.

It also serves as a reminder to myself that the purpose of this blog is mainly to be like a medical journal (for myself and others who might need the info).

Status of Tinnitus: rather unchanged.

It is still sounding the same as it did when I started being bothered by it, with a rather constant “UUYYUUUUYYYUUUUYYYUUUUUYYYUUUYYYUU….” around 1 to 1,5 KHz. It’s worst on the right ear, and it varies in intensity (or strength/volume) according to how tired I am. I don’t know if that means that the tinnitus is worse because it’s actually louder or if it’s because my tiredness makes my brain more susceptible. It is a matter of perception I think…

General health, back to regular training

I have started training again, after a whole year without any training regime whatsoever. The body seems to respond well to the exercise as opposed to one year ago when any exercise gave me pain and aches in both bones and muscles. My goal is that my little overweight shall become less during this winter instead of becoming more as it usually does during the dark season.
The chronic pain in my knees is fading. This is a little miracle for me, because it was troublesome to just take the stairs at times. I thought the chronic pains was a one-way ticket into some sketchy knee-surgery-history. I’m glad I was wrong
I have become conscious about the fact that I can not and should not run anymore in order to save the knees from more wear. So my focus has been switched to alternatives like kayaking, biking and swimming. And that is all right by me.

High permanent stress levels leads to immune system deficiency?

I have a theory that the level of stress in me the latter years made my immune system turn on my own body as a warning mechanism (the signal being: slow down!). I don’t know if this makes any sense, but what if the immune system reacted so strong to the state I was in that it actually attacked parts of me it was not supposed to attack? I know, it’s a wild theory, so if anyone has any views on this I would appreciate any comment. I googled on the term “autoimmunity”, but those articles where mainly oriented toward causes for arthritis and diabetes. I didn’t go deep though…

Status update III – part 3 of 3 – Social life and Society

My social life suffers. I decline offers of going out with friends, I withdraw early from family assemblies, isolate myself from communicating with people in such occasions. This depresses me. But I live on the knowledge of that it’s a passing thing, and that one day I will be able to participate as I used to again…

I have placed a lot of hope in the CI-surgery, but must not forget the possibility of that I cannot get the operation due to “factor X”. If that happens, fine, so be it, then I have to learn sign-language and bring my family in on it… No problem with that, it will only take longer… And the rewards lies elsewhere than in being able to hear again, I’m sure.

It is a test of character to wait for Rikshospitalet to get around to operate on me. The last months events has not been much fun, and it drained me of energy and tested my motivation. But I think I have come out on the strong side of it.
I’m nagging and nagging at the best of my abilities. I do not wish to cause a conflict or anything like that. That would only hurt myself. I do what I can do with the situation I have at hand. The rest is up to destiny.

I’m currently waiting for my contribution to the health-debate in Norway’s premier news-paper Aftenposten to be published. I look forward to publish it here on my blog, but will wait until it is published in Aftenposten Aften (the evening issue) first.

I still await answer from the state secretary Roger S. in the Norwegian Treasury Department to my letter about countermeasures that I think should be taken to address the problems I have experienced. I still have a hope he will see himself fit to read and to respond to my short letter…. He is a busy man, I have no doubts.

I am hanging on to myself and my sanity, and thanks to the people I care about the most, I am able to cope. Considering the challenges I face, I feel I’m doing a pretty decent job of it. I pat myself on my back

I will persist, I am patient and I will persevere. I will be stronger and a better person as an outcome of this trial by fire.

I live on love.

The 3Ps… and friends

Thanks to Sam “Blitzer” for a reminder of the key to endurance: “The 3Ps”.

His post on Michael from Minnesota who has trouble with getting approval of CI served as an inspiration to me today.

The 3Ps:

Persistence

Perseverance 

Patience

I want to use this opportunity to thank everyone around me in my life who helps me keeping my spirits up:

My mother, my dearest girlfriend, my beloved son… Thank you all for being in my life, each one of you is a reason for me to stay tough!!!

Inger Anita – who is a driving force in the CI-community in Norway today – and I’m happy and proud to call my friend , everybody at Briskeby, Ragna from Telenor (thank you for great support! It means a lot to me Ragna!), Lene from Coachteam – thank you so much for you, Lene!!!, everybody at HLF (who brought this happy news: a new legislation concerning childrens rights to proper speech and hearing training after a CI-operation is in works at Stortinget.)

And to all my social friends whom I haven’t seen in too long time: sorry for not being there lately, I will make it up to you in the future! You know who you are

Just say yes to sunshine

Today I want to spread some sunshine.

This picture shows the morning sun entering the valley of Lærdal in one of the deepest parts of the worlds longest fiord; the fiord of Sogne (Sognefjorden). The fiord goes almost halfway into Norway.

This is my view from the window as I write, and this is the view I enjoy every day I’m visiting my girlfriend. It’s uplifting, allright

Lately I realized that I have been indulging myself in self-pity too much for my own taste. It’s time to turn the other cheek and greet the spring and summer with a new fresh, happy spirit. Bad news on the CI-front will eventually have to be replaced with good news again.

So, my dear readers, please enjoy the view of Norwegian mountains with rapidly melting snow on the tops. Today I will walk in the bright sunshine, take pictures like crazy, and if they’re good, possibly share them here with y’all…

Have a nice sunny day!

Quote of the day:
There is no greater impotence in all the world like knowing you are right and that the wave of the world is wrong, yet the wave crashes upon you. – Norman Mailer

The cost of a CI-operation?

Can anyone tell me the cost of a CI-operation? Either for one ear, or simultaneously both ears?

I would like to “hear” (pun intended ) from everyone who has knowledge about it…

On a personal note…

My writing is a bit slow these days, I hit a mental bump in the road caused by these budget cuts I was interviewed about…

I’m sleepless in Oslo again, and thought it would be a nice opportunity for letting the world know I’m still here…. And finally browse through some old photos of mine…. Time to air them

Easter holiday is just around the corner, and I intend to spend my time at our Swedish farm by the lake to get my inner strength back. I will hopefully complete a restoration of a sturdy American built Mercury outboard-engine that has been broken and lying around for years.
Also I will take up a new hobby; kayaking! And with that another too long ignored interest of mine will be much more interesting: photography…

I imagine a lot of photo-opportunities just waits there for me to capture… Have plans to take it up again… Hope to show some of them off here on my blog in near future! These two were taken last year with my Nokia cell-phone, imagine what I could do with a proper camera….

And good wishes (and a little jealousy     ) goes to these recently CI-activated blogger’s! Pay them a visit and leave a happy Easter note and let them know we’re CI-happy for them! Some of them has posted their activation videos, check it out!

Sam the brave-blade-Runner, Steve the Ruminator, Michael “ReBuilt” Chorost, Abbie “Contradica”, Jennifer “the butterfly” and Jeff “metalhead”.

 

With this last picture I took last year around Easter time I bid thee good night and I wish all my readers a happy Easter holiday!

Technorati Tags: cost of CI,CI,cochlear implant,sweden,kayaking,photography

Status update II

Where to begin??? Well, since my last “Status update from Nov. 6th 2007” (where everything is still valid, I won’t repeat everything) some things has changed.

Overall everything is a little bit worse. Tinnitus is loud, perhaps more constant, fatigue is a bit more severe. I get tired a lot faster from a lot less sound. Headaches are frequent.
It’s gotten to the point where I can’t stand the sound of pretty much anything. Even faint fan-noise is uncomfortable. I’m pretty much intolerable to any sound now.
Less than a year ago I was able to listen to music, now I have my hearing aids turned off more than they are on… I rely more and more on my lip-reading skills…

Bilateral CI-operation is still my number one priority. Other than that I continue to take care of my 7 year old son, my fantastic girlfriend (so grateful to have you in my life, honey!!!), family and myself as best as I can. My psychologist has helped me to be able to be comfortable with the fact that there’s not much more I can do. So instead of feeling lost in a black hole, filled with despair, I relax as much as I can, think positive as much as I can and so on. But I have to admit that some times I get the blues and wished that CI-operation could be in the past instead of in the future. But then again, that’s something to look forward to, right?

I am now at about number 60 on the waiting-list for the CI-screening. About 4 months ago I was at the 100th place. If that pace holds, it means about 10 patients a month, which means I could be looking for an appointment at around 6 months from now… Say august… I certainly hope so!!! I really shouldn’t complain, because I’m a lucky guy, really, who live in Norway and these kind of operations are funded by our health-care system… But things can always be better! If not for me, than maybe for the future post-linguistic-deaf person who need CI…

It will be interesting to see how the hospital will respond to my request for doing both ears simultaneously…. It’s not at all standard procedure, I know. It’s just that there’s really no alternative for me, so I might as well get both ears done at the same time…

I think the technology is ripe (Advanced Bionics Harmony with HiRes90K implants that can do 120 frequency bands), the surgery-techniques have developed and are pretty secure. Besides, operating one ear at a time is less cost-efficient than doing both at the same time. 300 000 NOK for one, and 500 000 NOK for two. That’s a whopping 20% saving! Or 100 000 NOK in plain numbers. Not to mention, my recovery will be over once and for all, and I can get back to the workforce sooner.

If the surgeries are done one at a time, I guess it will be almost 3 more years before I’ll get through it for good. In total that could be 6 years (!) of my life dominated by this CI-process…

The long walk…

If I also take into consideration the time I spent dealing with the fact that I slowly lost my hearing, I would have to add a few years to those 6 waiting for CI. I also struggled with work since 2002. I’m up to almost 10 years of my life!!! If everything had been optimized, it could have been as short as 2 maybe 3 years….  Something could have been done a lot better by the health-care system and by the governments…

I hope that I will be able to work and function even with one CI, but I know it will take more strain on me. I know how it is to be deaf on one ear, too (all those times with defect HA, no good battery etc. etc.). And remember, CI is not fixing my hearing to a 100%, but maybe 30% of perfect hearing. Those 30% is certainly a lot more than the 0,5% I have now…. In fact, it’s more than I ever had. All my life I had approximately 20% residue hearing… And if I get more sound from all over the frequency-chart, I will be a very happy normally functioning deaf man!

Other than my deafening, my knees are shot, I’m still waiting to hear from the hospital after the initial response that my request has been recorded and acknowledged… I’m not able to do any physically challenging things like running (forget it), ice or in-line skating, swimming(!) or long walks…  I’ve been gaining kilos all throughout this winter   More of me to love

Last night I finally got through the sleep-registration for detecting if I’m suffering from sleep apnea or just plain snoring… Something I decided needed to be ruled out as cause or bi-factor of my relentless fatigue…. Report is due in the mail sometime soon…

I have to thank all my blog-friends here: Thank you for sharing your experiences with the world, thank you for reading my blog and for encouraging words and support! I salute you all! You are indeed a well of good information!

Beautiful Butterfly Jen, Bionic Woman Abby, Running Crazy Sam, Michael is writing Chorost, Metal in his head Jeff, Great Cochlear Kids, Roberta from Italy (where’s your blog?) and many more!

Technorati Tags: postlinguistic deaf,cochlear implant,deaf

My son, the papparazzi

What I hear (or what’s left)

It would be a good idea for me to put down some kind of status as to how my hearing is these days (as a baseline):

Without my hearing aids I can barely hear:

• My son singing at certain notes at the top of his voice (gives me echo-effect on that frequency until I hear new sounds)
• A tractor right outside my windows (5 meters away)
• Only the bass from music

With hearing aids in quiet surroundings I hear:

• Well enough to understand spoken words with the aid of lipreading (better if my head is clear and rested)
• When really silent: a noisy refrigerator, traffic noise outside the building, an airplane or helicopter in the sky. I get a “white noise” sound from running water.
• My external hard-drive – the spinning disks vibrate into the wooden table.
• Other peoples voices in the room, but cannot understand without lipreading.
• Familiar voices on the mobile for short conversations and messages. I most often have to repeat and ask for confirmation. It’s border-line.
• Other peoples footsteps in same building, maybe a slamming door.
• Static noise from electrical FM-devices like my Phonak Smartlink

With hearing aids in a “quiet cafe” surrounding I can hear:

• Spoken word if not more than 1 meter away, but I have to concentrate really hard
• Other people speaking, but cannot make out what is said.
• Music, but only in the form of unrecognised sounds…

 With hearing aids in noisy surroundings I hear:

• All sounds are garbled and mixed in an impossible soup of noise
• I can extract a voice from 50 cm away if noise isn’t too bad, and I know the subject and the person (if I’m used to lipread whomever, it’s a better chance of understanding)
• Cars and trucks travelling at high speed close by me
• Dogs barking loud

When waching a movie with sound directly into my hearing aids I am dependant on captioning. Environmental sounds like running water (splashing), wind blowing, birds chirping etc are lost completely. Spoken words are not understood at all without captioning (dialogue is most often switching and camera angles changing too fast for lip-reading to be effective enough).

Music has lost it’s magic during the last few years. I can sense the rythm, and hear most of the bass and drums. Percussion is completely gone. Perception of vocals depends on type of music and what tone the voice has. Guitar has disappeared slowly last few years, now it’s not “swinging” at all anymore…

I wrote down this, because I want to use it to compare later when I get the CI (my personal baseline).

The Bøya glacier

Clouds cover the top

Jølster, entering Fjærland

Kjøsnesfjorden

Cold on cold winters day

Still suffering from that common cold I reported on a few days back, I feel it takes forever to recover. I’m an impatient guy who hates to be slowed down. But I guess the years have given me at least a little more of that precious patience. When I grew up i was prone to get ear-infections and had more than my fair share of common cold and alike.
This time it has been a while since last round so I notice things more vividly. I am even more baffled by the impact the clogged sinuses and all other symptoms have on my hearing. Talking in a controlled environment is harder, thus giving me even more strain by communicating. Being in noisy environment communicating is virtually impossible.

I have become quite obsessed these last years about dressing myself properly to avoid getting cooled down and thus more vulnerable to catch a cold os something similar. I make sure to stay warm on feet, head and neck as good as I can. I can sense when I get bugs in my body, and mostly I feel I’m able to beat it down before I get sick. It takes a few hours sleep and a lot of heated beverage like milk with honey in it

Sometimes I wonder if I’m developing paranoia for illness, or if I’m a hypochondric…

Speaking of hypochondria, I remember when I was young I was often accused of being hypochondric, because I complained a lot. In retrospect I can understand that, and at the same time, I understand my own behaviour. What I didn’t understand was how I was affected when I had a cold. And being young and utterly impatient the feeling of increased isolation and deafness wasn’t easy to deal with.
Over the years I have slowly come to terms with all the issues concerning my state of hearing, and I have also developed this “smartness” in avoiding getting sick. I’m quicker to sense when the air is getting colder on the evening in the late summertime/beginning of fall. I know my own body better and treat it with more respect than ever before.

I do exercises on a daily basis to prevent back and neck-pains. I have gone a few rounds with my physician, and have been able to determine that my right knee has a injury to it that needs closer attention. I guess I’m simply more bodily aware than ever before, and that is a good thing, because I need to optimize (compensate) for the secondary impacts of my near deafness on my body.

For example, my back pains originate in the fact that I use my neck to protrude my head when I have trouble hearing (you know; putting my ear out to signal that I do not hear properrly). Over the years that have resulted in a neck that does not harmonize, thus straining my back further down, causing secondary symptoms.

A course with a psychomotoric therapist and advices from my girlfriend has taught me this.

The exercises I do now really feel beneficial to me. Amount of back pain is reduced to almost nothing. Headaches caused by stiff neck and stress is reduced. All because I won’t stop trying to figure things out….

Link to Spine-Health, about common cold and hypochondria

Technorati Koder: hypochondria,common cold,health,sick,paranoia,exercise,back pains,near deaf,hoh,hard of hearing

A new feature to the blog

  Poetry in a picture….

This picture was taken today as I was x-mas shopping with my girlfriend in Førde, and sendt directly from that spot using my mobile to this blog. This is possible thanks to ShoZu, which in my opinion is incredibly cool! Easy to set up and VERY easy to use! Works with Facebook, WordPress and several other blogsites.

Expect to see more pictures from me on this blog

Technorati Koder: photo,norway,poetry,emotion,blue,pink,mountain,ShoZu,WordPress,picture,cool

In sickness and health

Coming from a lot of resting and relatively no stress I can feel somewhat energized. But the feeling of fatigue is less than one hour away still, and that can be frustrating. But I have come to terms with the fact that this is how it is – for now anyway. And I feel that I’m getting better a little at a time. I hope it’s not just wish-thinking…..

Yesterday I came down with a regular cold. Comes with the season, and especially when you have kids roaming in germ factories like schools.

All hearing aid users probably know this: being hard of hearing makes you a extra deaf when being “stuffed” and having to blow your nose every ten minutes or so… But for people who do not know how it is to be hard of hearing and use hearing aids, it’s virtually impossible to understand the impact of a common cold on hearing aids users. This is what I want to try and explain now.

When common cold occurs, one is likely to get an increase in internal pressure in the neck/throat region due to various swollen glands. This in turn puts pressure on internal organs in the head, hence headaches, light-sensitivity and REDUCED HEARING. When the cochlear has more internal pressure where the hair-cells are situated, the gel-substance that carries the sound waves to the hair-cells is a little less sensitive. That means that the overall amount of energy that reaches the hair-cells in cochlear is being reduced.

Then there’s also the impact of all the fluids that forms in the sinuses.
With reduced hearing in the first place, such an reduction on the hearing gives a larger effect on hard of hearing, thus making us more deaf.

Aside from the normal symptoms of common cold that makes you tired, feverish and so on, it also makes near deaf’s have to put even more energy into the business of communicating.

I propose that near deaf need an extra low threshold for sickness leave from work etc. It is also important that the employer understand the fact that common cold has a stronger impact of people with hearing disability.

Technorati Tags: sickness,fatigue,health,understand hearing loss,near deaf,cold,common cold,symptoms

Dreaming deafness

Woke up early today from a vivid dream…

I was at a banquet or an award show or like, and the hostess and host of the show somehow pointed me out among a lot of people and started making their way towards me.
That would normally be the last thing I would wish for, as I have had a lifelong fear of appearing stupid in case I answered wrong. (you know, if I didn’t hear the question properly, I would answer something else, thus making it funny for everyone…)
With microphones jammed up in my face and spotlight zooming in on me along all the attention from everyone present, they started asking me easy questions I was able to answer ok, you know, to warm me up… 
Then the guy came “to the point” and halfway into his question I lost him completely. That would be where I normally wanted to sink into the ground and die of shame or embarrassment. In this dream I just said: “I’m sorry, I didn’t hear you.” Being very calm inside, laid back and not stressed, I waited for their next move. Somehow the social pressure on me was gone, because they had a show to pull off, and by picking me the “joke” was on them. I could see the guy lost his nerves and didn’t know what to do. At such instances I feel terribly sorry for the person, and want to help, but in this situation they were interviewing me, and I could not help by taking charge of the conversation as I normally would.
The woman stepped in for a try and she failed too…. then I woke up, wide awake…

This was a weird good dream for me. Can’t remember last time I had a dream about being out there publicly. And the thing that hits me about this dream is that I’m just being me and honest about it (that I can’t hear everything), unlike before in my life, where I’d have a number of strategies for “handling” such a situation, thus “saving face”. Doesn’t matter what kind of situation I’m in, I’m who I am… Near deaf and all

I think this dream was some kind of milestone for me.

Technorati Tags: dream,dreams,deafness,deaf,psychology,dreaming

Battling tinnitus, headaches and fatigue

While living my life, with the absence of the working life strains, I still have to deal with stuff that is quite heavy.

First out is the tinnitus. Coming on strong in the evening and especially before sleep, I can feel the phase-shift as I have taken out my BTE HA (behind-the-ear hearing-aid) and the sound-world has disappeared.
After only a few minutes the concert starts with mid-level frequency sounds (where I have never ever had a sound chart reading above 110 Db) trying to find the right tune, just like violinist warming up before a show. The level of sound varies a little, and I have different sounds in the right ear from left ear. In short: a cacophony just as a whole orchestra is warming up before a concert…
Sometimes I get a spike of sound. A sound very distinct almost like the ping sound a submarine uses in it’s sonar just lasting a little longer. And that sound startles me every time, since it’s very loud. And it pops up in both left and right ear totally randomly.

Then there’s headaches. I get headaches almost daily for what feels like very different reasons. Sometimes it’s the overload of sounds either in loudness or in durability. Other times it’s strain headaches from stress from various situations, or just plain stiff neck. And the wintertime low sunshine on clear days can also induce headaches. Seems like I have a low tolerance for headaches. Just checked my brain with MR and x-rays and all results came back negative, which is good news. One less thing to worry about.
I have taken some actions to fight the headaches, and I think I’m on the right path. I have started doing exercises for my neck. And I’m doing it very slow and careful now in the beginning, as I get headaches from doing these simple exercises.
Most HOH and near-deaf people have one thing in common: we move our head forward as to signal to anyone that we need to hear better. I think it is also an instinct in order to make the distance between us and the source of sound as short as possible.
My neck is  very agile going forward, but back and to the sides, it’s as stiff as a stick…. So these exercises, bending my head back and forth, from side to side, and rolling my head slowly around are having an impact… I can feel the cracking of neck-bones and the headaches come bad right away, which I think is the rush of blood extending the blood vessels in my head. And my head isn’t used to those extending blood vessels, thus giving me headaches… I hope it’s temporarily, because if it is, I know I’m on track of doing something that will improve my day to day shape.

Then we’re on to the fatigue… Tinnitus and headaches clearly attributes to the fatigue, no doubt. I have also recently heard about a phenomenon called “recruitment” that could explain the sensations I get from my ears and the following feeling of fatigue and exhaustion. Will read more about that later, and research it too. See link to the article I found under the heading: “Special Subjects”.
Depression is also a common factor resulting in fatigue… Am I depressed??? I really am not sure… Sometimes, yes I would say I’m depressed, other times I’m as happy as a lark in the sky singing away… So, you tell me…

Technorati Tags: recruitment,near-deafness,symptoms,life,hearing,tinnitus,psychology,coping

Fatigue 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!

Technorati Tags: psychology,deafness,near-deafness,rehabilitation,health,life,fatigue

Midlife – on new paths

A pilgrim walking alone
Memory of a time lost
Seeking purpose, connection
From here on

A lot said and done
Not all undone
Lack of time lack of sight
Thinking; time heals all

In breath and movement it still sits
Unleashed, untouched made to ice
Inner frost, loneliness and grief
Pushing for release

New sounds, and paths
Demands new compass and maps
A lone pilgrim still walking
Towards greater insight of body and mind

“Midtlivs – på nye stiar” by Inger Anita Herheim, freely translated from Norwegian by Ulf Nagel

Status update

Tinnitus is still there, disturbing concentration and sleep. The left ear seems to want to join the debate as to wether the hair-cells in my cochlears are about to wither and die or not… For the time being, the tinnitus is bearable because it’s inaudible during the time I wear my hearing aids (HA). But I have noticed times when the tinnitus breaks through even when I wear my HA. So the signs is that the tinnitus will not subside or fade, on the contrary…

Fatigue is still severe and limiting my activities on a daily basis. However, I have now organized my life in order to have less activities, and it feels good. I get more ability to initiate things I want or need to do. I still have to do a job regarding my own mentality towards the fatigue (how I cope with the feeling of being “empty”), but having said that, I have now eliminated most possible external causes for the fatigue.

Bilateral CI-operations are still my number one priority in the long term. In short term it is my son, girlfriend, family and myself. As for the CI, I do research, talk to people, evaulate back and forth. I have also checked out the status of stem-cells research of regenerating hair-cells in the inner ear, and the conlusion is that it is indeed exciting and promising, but not plausible to expect within the next 10 – 15 years. That rules out stem-cell therapy on my part. If I by getting bilateral CI-implants ruin the possibility of stem-cell regeneration of my cochlear hair-cells, so be it. I live now, today! That will be for the next generation of deaf and near-deaf.

I mentioned music in a posting yesterday; The music’s over – for now… Since I started this blog, the time spent listening to music has declined automatically and quite evenly as I started reducing the strain on my ears as an experiment. It requires too much concentration of me to listen to music anymore. Before I could get a kick out of music even when relaxing. Today I need to really focus and also have the lyrics in order to “get” something from the song I’m listening to… After a very short time it starts to feel like my head has been through the washing machine…

(Reminds me of “It’s all gone – Pete Tong” – a movie about a DJ who looses hearing)

Symptoms from too much sounds:

• Pounding and pulsating sensation in head (brain?)
• dizzy (I’m even getting troubles with balance if I overdo listening),
• my counscious level is reduced (like I’m sleepy but I’m not),
• concentration has diminished (harder to follow what people say to me, I concentrate harder),
• cognitive skills reduced drastically (I know this thanks to my un-scientifically measurement method using Su-Doku)

and…  I suspect I’m getting mild migraine from time to time, even though that could be related to the fact that I quit nicotine permanently 18 months ago. My brain is perhaps still adjusting to the fact that my blood-vessels are getting sound and healthy again. The migraine-tendency could be caused by dilated blood-vessels in my brain, and if this is the case, those pains will subdue soon… Prone to light-sensitivity, I also turn down the intensity of lights.

On a personal level, my life is good, I enjoy being a father, and have a wonderful girlfriend with whom I can spend time. My family is close to me, and somewhat engaged in my condition. Friends still keep in touch with me. I’m feeling active and engaged, working on several “projects”, including this blog and fixing up my apartment and helping my mother and stepfather with their recently aquired small-farm. I keep in touch with former employers, and have moral support from them, have several contacts in the near-deaf-community and so on.