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.

Finally there – and difficult feelings

17265-Local-boat-Lake-Kariba-0

Right now I’m in Zambia, next to Lake Kariba. Planned this trip a good while ago, among other to keep me busy doing something exciting while I’m waiting for the CI. It is a good strategy for me to have my mind on something else than such a frustrating thing like the CI-waiting….

Just  before I left I received a letter from the hospital calling me to the second appointment. To my great regret, this coincided with my planned trip 😦

But sometimes in life things have to go as planned, and I have asked the hospital for a new appointment. I feel like a traitor.

I have asked and nagged for this CI surgery for so long, and now when the appointment for the second and last examination finally appeared, it appeared before I expected (I asked the hospital a few weeks back when to expect something to happen).

lake kariba 009And it also seems I will get problems bringing my girlfriend with me on the second appointment. This is the session where all the information is given, and I have to find a way to get her to come along… She needs that information even more than I do… We’ll have to work something out, I guess… Take care of it when we get there, I guess….

Anyway, the date is now 18.06.09! 🙂 This is the second and final examination before the actual surgery.

Looking forward to it with both a little fear but mostly with great joy!

Meanwhile I’m having a great time here at the greates man-made dam in all of Afrika, just as planned! I intend to forget my difficult feelings and just absorb all the impressions and enjoy them. I feel I deserve it!

Visit my facebook-profile for updates on my Africa trip 🙂 

(just klick my personalized Facebook-banner on the top-left of this blog)

Patience, understanding and love

When I started this blog in late 2006, I had a feeling it would be a long journey (that’s why I started the blog in the first place). That suspicion became stronger after receiving a letter from the hospital saying that they had an obligation to operate on me before 2010. What I had ahead of me back then, has been more or less as expected. I was prepared for a long haul.

“To exist is to change, to change is to mature, to mature is to go on creating oneself endlessly”. ~Henri Bergson

I want changeMy every day life has changed a lot. More activity, never a dull moment. I wish the day had more hours :-)  I’m not “waiting” for the CI anymore, I let that struggle go this winter, focusing more on my own life and people around me. (Mind you, I still need the CI desperately!) I’ve had enough of trying to understand why Rikshospitalet are not able to operate more than 50% of what the Health ministered ordered last year (see some of my previous posts). I don’t think my engagement into this issue has any meaning or bearing anymore. I’m sad to say this. (I hope I had a little impact, but I have achieved no real results, to my knowledge anyway.)

Waiting, waiting and more waiting. In fact, it has been so much waiting, that life happened during the waiting 🙂

And life is what everything is about, isn’t it?

In retrospect I can with great certainty conclude that I did all the right things back in 2006 and 2007. (You have to read the past posts on this blog in order to know what has happened to me and what I have done  :-)  )

I have managed to get my life back. I am in a place that is brighter and better, even though it has it’s challenges. I am where I want and need to be.

I am able to cope with life, and take care of my loved ones and myself (somewhat).

But I’m walking a fine line. Experiences from every day life tells me that I have very little to go on. Only thanks to the slow process of acknowledging that I’m by definition deaf, I have come to understand better what the process of loosing one’s hearing does both mentally, physically and socially. And take some precautions in order to preserve myself from exhaustion.

I am deaf, I use hearing aids to take advantage of the very little hearing residue I have left and thus suffer from a rather severe case of “recruitment”. I have tinnitus on both ears, get tired really quickly in general (and then the tinnitus really howls!) and have no chance of keeping a regular job. I need all my strength to take care of my son, my dearest girlfriend and her son, and last but not least, myself.The Fight Of My Life IMG_1252

I had to fight to get my life back. I had to fight with my willpower in order to do all the right things in many areas of my life. I changed a lot in my life. I changed myself in many ways. I changed how my family perceived me. I had to get them to understand me better. And it helped.

In a way I had to try NOT to fight, too! By accepting my fate and my condition (it is by no means a surrender, mind you! :-)  ) I have learned that my mind and willpower can work against me as well. Rather than standing tall in the strong wind, risking to break something or get hit by flying debris, it is better to bend over and lie down on the ground and survive. Sometimes it is much better to accept fate and accept conditions, rather than opposing the facts and use a lot of energy trying to get things my way. The consciousness of this “bend before you break” is helping me in many areas of my life.

This blog will remain active at least until I have received my first CI by the end of this year, but it will be less active due to lack of time and energy to keep it updated.

I have learned to suck things up. Take a punch. Even though life is hard when it comes to my health right now, I have so much to be grateful for. I will not allow myself to turn sour or negative. What happens happens. I’ll do my best and want to keep a positive mind about everything. All is good until proven otherwise 😉

I’m going to use this experience to improve my own life in the future. No matter what. There is another day tomorrow!

“If we don’t change, we don’t grow. If we don’t grow, we are not really living.” ~Gail Sheehy

What to think?

Since my last post life has grabbed hold of me 🙂 This is a good thing. I’m changing my life in the direction I have always wished for. I consider myself extremely lucky 😀

Life is looking good, but has it’s challenges and a few funny twists…

Challenge 1: how to engage in healthy social life as a post-linguistic late deafened man without blowing a few fuses?
Answer: It’s near impossible. But with an understanding and supportive girlfriend who also gives me “the speech” when I need to hear it, I’m learning my lessons and I have to take the consequences of it. And I do. Many thanks to my sweetheart for being my honest and fierce hearing assistant and for taking care of me!
The very first meet with her large great family was made into a positive experience despite really sad circumstances. “C’est la vie”, as the french say.

Challenge 2: how to handle the (what I feel is) suspicion from medical professionals that ask me if I can’t do more than I am doing at present time?
Answer: Tell myself that my feelings can be ignored (in this matter), that I’m probably mistaken, and that if my physician really wanted to understand, she could ask me more questions. No one can understand my condition without having been there themselves, or asking me about how it is (I have become quite good at explaining it). On a side note: my perfect speech has become one of my “problems”, because “you can’t speak perfect and have a hearing problem” (you should at least have a speech deficiency!). Most people almost fall off their chair when I tell them my hearing chart classifies me as a deaf (as they have shown for many years).
It’s my hearing it’s something wrong with, not my head and certainly not my mouth!

Challenge 3: How to handle large life altering changes in life?
One thing at a time. And take it slow if you can. I have no other recipe. 🙂

Twist no. 1: A girl I know applied for CI after me, who has suffered sudden deafness on one ear, is due for CI-surgery at Rikshospitalet within the next two weeks. Why is she prioritized?
Believe me when I say that I’m thrilled for her! She is a great person, and really deserves it. But what about me? Didn’t I complain enough? Am I too naive about expecting the medical professionals to understand my condition? Isn’t it enough with deafness on both ears, a recruitment problem and a devilish tinnitus? I have a child I’m taking care of too! I feel I’m being punished for coping too well through difficulties in my life… It’s not the first time this has happened to me. I keep on doing my best. It’s all I can do. And to wish others good luck with their surgeries… My turn will come. I’m lucky and blessed with what I have in my life… I shouldn’t complain… I just want things to be fair and equal. But you can’t expect life to ever be fair, I’ve learned that much. It will only disappoint you.

Twist no. 2: The government are about to release a “finance crisis” package of stimulation to the economy. How about stimulating Rikshospitalet to operate on all those 200+ adults who need CI and have to wait 2+ years? That alone would save the well fare system for vast amounts of funds! It aggravates me! This (CI) group of individuals are too small to be heard in the larger context! I’m still waiting for Association for Hard of Hearing to get going with the process about the CI-operations at Rikshospitalet that is failing to meet the demands from the Health Minister last year… But anyway my turn is due soon, and this media-thing will probably come too late to have any effect for me anyway.

Frustration no. 1:
I had to ask for an extension of my temporary well fare benefit due to the slow process of CI-surgeries at Rikshospitalet. It will probably amount to another year! Another 500 000 NOK of taxpayer money wasted, and another year for my professional career gets lost. I’m starting to think: why bother trying?

Status update IV – early autumn 2008 – part 1 of 5

Hello again, world! Sorry for my absence lately…

It is time to summarize my condition and status concerning the CI-process again. What has happened since last time and what is current approximate time schedule?

It’s now a rough period for me. Things are heavier and I struggle with a lot of different things internally. It began this late summer. Personal life hit a speed bump and for the first time since I “hit the wall” back in 2006 I have regressed somewhat. The positive in this rough patch is that this time I’m more aware of what is happening, and I’ve been strong enough to avoid depression and destructive “artificial solutions”. This is very much thanks to the ongoing psychological therapy I continuously attend. And of course, it has mostly to do with my inner strength and my own reflections and attitude. My therapist constantly reminds me of that. It is about time I remind myself too. I feel like I have finally grown up, at the age of 36! Way to go, I say to myself. Better late than never 😉

Life in general

I have projects to keep me busy. I’m fixing up the apartment these days. Painting doors white (they had this dreadful dirty greenish seventies retro color with dark brown/black frames. Some retro is cool, but these doors were outright depressing). I paint both the frames and the door blades white and give them new brushed steel handles which is much nicer. Maybe it’s new doors of perception I am making? I certainly will perceive them differently after this refurbishment and renewal process.
I also have a long “to do-list” hanging on the refrigerator, so when I have the money for it, I’ll continue on that.
My son is at my place a lot, which is a handful for me, but very rewarding and pleasing. We have a lot of fun. Maybe I’m too much of a weekend-dad, but hey, life is too short to be an uptight authority figure all the time… My son gives my existence a real meaning. A reason to keep fighting and to stay in there.

I just started my own company. Got it registered and already have one big client which is enough at the time. Since I’m a beneficiary of a government support arrangement, I’m only allowed to earn a certain amount extra, which suits me fine. I’m not able to work that much anyway. So this arrangement is perfect at the time being. I’m starting something new, I’m keeping busy, avoiding the couch potato depression and making myself ready for post CI.-surgery.

My familys place in Sweden is a resource for me. I can do all sorts of physical labor things there, at my own pace and only the stuff I enjoy doing. It is a sort of therapy, to do practical things. When I focus at the task at hand, I can forget about the whole world and everything for a time. Things I do is various tasks with our 1959 Fordson Power Major tractor, building a tree hut for the kids (will eventually have three floors and be the hut I dreamed about as a kid 🙂  ), maintaining a patch of forest wood as a lumberjack. We’re also currently trying to fix up a garden that had been dormant for 6 years or so. We’re making a rose garden with all sorts of roses. That includes trying to make a whole new lawn on a patch that is about 25 x 75 meters.

I take kayak trips, photograph, do some woodcarving, welding, fix my car and play around in this great workshop garage that we have, fixing boat engines among other things. I play with the idea of building a go-cart for my son with a lawn-mover engine…

Also I’m making plans for the future. The business and my new company is part of that. I am now able to try it out on a small scale, make experiences, and can then make a more qualified decision when I am going back to working properly again. I look forward to that. Get out, meet people, be social, and enjoy my home and free time with good consciousness.

My un-sound condition – pre CI era

I want to make this list in order to remind myself what it was like before I got the CI (2007/2008). Maybe I run into problems post-surgery post-sound activation and need a reminder of how I reacted to sounds before the operation(s). It’s a time capsule to myself…

Here’s a similar post I wrote January this year…

These are the sounds that causes great stress, fatigue, even pain and vertigo in me these days… 
  • All things mechanical like car engines, especially bigger engines like on buses and trucks.
  • to many voices at the same time, especially if a little loud
  • the clanking sound of ceramics against ceramics (dinner plates)
  • my son at the top of his voice (vertigo)
  • my mothers voice when louder
  • children voices
  • the vibration sounds from my computer, or maybe it’s one of the fans
  • inside my car
  • elevator music and “muzak” (because it’s too faint for me to grasp, or too noisy otherwise, my brain tries too hard)
  • the hiss from the steamer on a cappuccino-machine
  • if everything else is quiet, the refrigerator noise is picked up by my HA and that sound wears me down
  • the air-condition in office buildings and alike
  • stiletto-heels and other hard shoe soles on hard surfaces
  • vacuum-cleaner and other domestic appliances
  • music     😦
  • any sounds in a room with bad acoustics (naked floors, walls and ceiling echoing sounds)
  • any background sound when I’m having a conversation
These are the sounds I can’t hear at all anymore even with hearing aids on
  • Birds singing (could hear them faintly as a kid)
  • My cat meowing
  • My bedside alarm clock
  • the fire alarm
  • the doorbell
  • running water
  • rain falling on rooftop
  • someone yelling my name from a distance or another room

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!

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?

The sum of 2007 – Happy New Year!

As 2007 soon is history, I feel it is appropriate for me to sum it all up for myself.

Even though my hearing is coming to an end, there are, however, sounds to look forward to. And that is the CI-sound! Still have to wait for it, but in the meantime, I can take care of myself and prepare myself as best as I can.

The year 2007 gave me many good things:

  • I started really believing in a better life for myself.
  • I learned A LOT about myself and life in general.
  • I’m much more self-confident in my role as a father to my beloved son.  
  • I consolidated my relationship to my great, great super girlfriend. Thanks for being in my life, honey!!!
  • I had the opportunity to spend time with my girlfriend 😉
  • I learned a lot more about CI, and I’m even more certain that it is what I need.
  • My health improved a lot from reduced stress.
  • I did a fair share of traveling and had a lot of activities. I’ve been busy, all right 🙂
  • This blog has become a good thing for me, I also made new online-friends from it 🙂
  • I discovered that my knee(s) probably need surgery so I can exercise again. (too much pain lately). It’s a good time to fix such stuff now, as I’m waiting for CI anyway 🙂 Just hope I don’t have to wait too long for the knees to be fixed either…
  • I made a lot of new acquaintances in the CI-community, for which I am grateful…
  • My life seems to fall into place now, as opposed to a little more than one year ago, where I felt everything fell apart…
  • Took care of my eyesight (new lenses and new glasses)
  • Relationship with family improved overall.
  • I learned to cope with my tinnitus, it’s almost soothing sometimes
  • I’m reading books on a steady basis again! For many years I have been so tired/fatigued that my ability to concentrate was very poor. I used to be an avid reader of everything, and now I’m on my way back 🙂
  • I’m sleeping well again.

The year 2007 gave me a few downturns too:

  • CI surgery is still in the blue as for a fixed date
  • The music’s over for now. I get no more pleasure from it (only occasional glimpses), only more fatigue and “head/earaches” 😦 
  • Speaking of fatigue; my battery is still worn these days, it takes long time to charge and very short time to empty… But it has improved a little, and that is to me good news, really! I feel the tide turned in 2007.
  • Trouble walking stairs both up and down, thus disabling me to exercise rigorously, which was supposed to have been my project number one this year (in preparation to CI-surgery). Even swimming was painful… Will be fixed soon I hope…
  • The tinnitus became a factor that I had to deal with. It is slowly increasing in force (louder and louder), but luckily it’s a steady tone, rather than the chaotic concert it was at first…. It’s more prone to appear when I’m tired, so it’s a signal for me too, to slow down or turn off my hearing aids for a break…

All in all, 2007 was a good year for me. Happy New Year, everyone!!!

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.

ist2_2899227_welness_massage_stonesI 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

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…

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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Midlife – on new paths

flowers growing_bl_wA 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

The importance of the eyesight when deaf part II – the conclusion

Getting used to contact lenses, and with the final adjustments just around the corner, I learned this:

My eyesight is as important to communicate verbally as my residual hearing with the hearing-aids!

With near 100% eyesight, I can tell the difference after a few weeks. Evidently I unconsciously strained my eyes to compensate for the slightly imperfect eyesight I had. This unnecessary strain has over time also contributed to the fatigue caused by multiple factors. Just how much strain is impossible to express in a number, but given my condition, I would say it is a quite significant strain that I now have eliminated…

I can tell from situations where people speak to me from a distance of a few meters away. I no longer have to walk toward them, since I can make out their lip movements from a few meters away. Earlier I would squint my eyes as much as I could possible do by using the muscles around my eyeballs, thus giving me strain-headaches and muscle-tensions in my face if I had do to it too much, say more than one hour in one stretch….

This experience is for me another evidence on how stretched my residual hearing has become, and how hard I actually work to participate in normal everyday verbal communication. I need that bilateral CI….

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!!!!

Summertimeout

A timeout for myself. My girlfriend has started her new job at a beautiful place next to the longest fiord in the world; Sognefjorden. The mountains surrounding us on all sides makes this a very special place…

My plan for this timeout is to simply chill. To take a trip within myself. I plan to take some long walks, go on bicycle-trips, see some of the Tour the France, develop some artistic skills in writing and drawing, and of course to help my girl get started at this new place and spend some quiet calm time with her… We need that now…

As for my condition; I still get quickly tired. Today I haven’t used my hearing-aids at all. I just sit here listen to my tinnitus come and go (I have noticed that the tinnitus disappears when I engange my brain into creative activities). The refrigerator here is making a little noise, it wears me out quickly and I don’t even notice it before it’s too late….

Lately I’ve been thinking that maybe I developed some kind of hyper-sensitivity to sounds as well? Is it possible? I mean, I’m loosing my hearing, how can I be hypersensitive for sounds? I read in a newspaper about a guy who had been over-worked, and he told the readers about how he couldn’t stand the sound of newspaper rattling or crumbling. That sort of things…. It makes sense: input overload gives hypersensitivity… It’s a natural reaction to excess input….

I try to listen to music every now and then. To my disappointment, I cannot endure for long. One year ago, I could listen to music for hours. Now I usually have to turn it off after 90 minutes….  And I have started turning the soundlevel down as low as I can. I can’t hear the music as well as with louder sound, but that way I can listen a little longer. Still it’s very limited. It’s just sad. I love music. I always did. Energetic music, moody music, love music, medtitation music and so on. The quieter and slower music doesn’t give me anything anymore. I loose too much of the whole soundpicture for it to be enjoyable. That leaves me with the energetic music with a lot of rythm. The rythm is good. My brain remember many of the songs and certain sounds I cannot hear, I can remember….

Jeez, tired already… I’ll write more in the next few days….. I have more news, but that’ll have to wait 🙂

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!

Damned tinnitus

I’ve had it before, but never for such a long period, and never so annoying. It has gone from this rather peculiar cooing sound that pigeons and owls make, to a steady signal. (same frequency – or tone if you prefer) The damned thing also seems to be controllable in some psychological manner… I just put my head to the pillow, real tired and ready for a good nights sleep. In the second I thought, ” good thing I don’t hear the tinnitus now”, it came on full force… (the sound is there almost only when I have taken off mye hearing aids… Just a few times I hear it with normal audio-world on) 

Is the sound there to spite me? Is it imagined, am I going crazy? Is it a sympton of a certain hair-cell in my cochlea that has it’s death-angst-cries before it finally ends? What?

 I have found out, or rather decided that I won’t let that shit annoy me. If I let it annoy me, the only one to suffer the consequences is me. So I rather be like a grass in the wind, I will bend and do something else… I just tried Su Doku, to try to get my mind away from it. Didn’t help now though, ’cause I’m overtired, and the Su Doku thing is on automatic these days. I have done quite a few…. I have a whole book… Working on the “difficult” section now…. After that it is the “fiendish”  section 🙂

So I thought, nah, better write some, use my brain more creatively… And it seems to do the trick… At least the tinnitus has faded a little in strenght….  Strange stuff…. I have to read up on the subject of tinnitus… And add the weblinks I come across to this blog…

As a sidenote; I just came back from a lone-trip to our newly bought small-farm (don’t know what else to call it). No animals or anything, its just a big house, two barns with a workshop and a beautiful lake only 100 meters from the house. I just went about my small projects like fixing up a Mercury outboard engine (9,8 hp), plowing a little field (no real success, I guess I just got bigger respect for farmers), getting the ’59 Fordson Power Major tractor to start again and some creative stuff… (now the tinnitus got stronger and louder again) Point of this sidenote: it was easier to relax, and I feel the tinnitus was fainter too… Perhaps it is all about perception… When I’m tired I perceive the tinnitus as stronger and more disturbing???