Revisiting old demons (emotions) part II

These demons used to be much bigger for me before I had sessions with an psychologist for two years prior to my CI-surgery. The reason I want to write about them now, and share them with you all, is that it is my belief that the social handicap a dysfunctional hearing represents also makes these emotions (and others as well) grow bigger and more difficult to handle, unless focused on and talked about. (Be advised: I do not know what is “normal”, and I do not have any formal education in the field of psychology, only my own life experiences including two years in psychology therapy for a moderate depression. I’m not an expert.)

If left unattended and with unfortunate social climate (lack of compassionate, patient and understanding people around you), these emotions represents ultimately bigger issues than the hearing dysfunction in itself!

In the aftermath, where I said my apologies (there has been many of them in my life…) the flashback feelings appears. And they are not nice. I thought I buried them a while back (in the context were talking about here), but evidently not. I guess I had hopes that I too would feel like a “normal” person in the aftermath of the CI-surgery (just to inform you all, I have not been activated yet). I think that these thoughts have been part of my what-I-hope-the-surgery-will-fix-thoughts. Anyway, a reminder to myself, that despite I’m now actually a cyborg, and I have prospects of hearing better than I have ever done in my life, my old demons will still be there, lurking and waiting for another episode where I loose my temper.

Why, I ask myself, do I succumb for the anger again and again? I have felt humiliated due to misunderstandings a million times, and every time it’s followed by all these other bad feelings.

I feel ashamed of myself, most often I have wrongly insisted on being right at the expense of someone else.

I am embarassed and feel guilty because I was wrong. I feel like I did something bad. I don’t like being wrong. I see myself as an informed and knowledgeable individual, but that doesn’t help one bit in a social context where I have to rely on my hearing and ability to lip-read and interprate situations and bodylanguage etc. And take guesses!

I feel sadness, because the misunderstanding and process of clearing things up first kills any good moods and happy conversation for everyone present. Secondly I feel sadness because I think it is bloddy unfair to both myself and anyone involved. It doesn’t have to be like that? OR?

I feel humiliated because I am, despite my intentions not to be so, has been mistaken about something, and it is public knowledge that I screwed up and made an ass of myself.

I feel sorrow (selfpity) because these kinds of situations are always hard reminders that I am not like “everybody else”. I’m a deaf person. An outcast.

Lastly I have regrets, because I feel personally responsible for getting wrongfully angry or righteous in the first place, and that I hurt someone and feel bad about that. Secondly i have regrets because I’m a stubborn person and in the heat of an argument, I’m pretty strongheaded and easily dismiss others arguments even before they have been completed. I’m sorry about repeating that mistake over and over again.

I had a thought about dwelving further in these matters, kind of debate with myself, but right now my head feels like mashed potato, så I will leave it hanging, and perhaps pick it up again later.

(Note to self, when I’ve been wrong so many times, I can begin to automatically take blame and say I did wrong?)

In the meantime, a little poem about regret:

A Farewell to Regret

This is my farewell to Regret,
Who served to teach me lessons
I shall not forget-
For now I have been acquitted
From the mistakes and the wrongs
I have committed
This marks the end of self-loathing
I’ve shed my tattered pieces
Of blame-stained clothing
Instead, I shall wear your pardon
Like sunlight falls upon a
Victory garden

Revisiting old demons (emotions) part I

Post-surgery day 7. A good day. Dizzyness has significantly decreased.

Today I want to dive into a very heavy subject: psychology. Or to be more precise: the psychological impact of hearing dysfunction in the social context.

I might begin to generalize, and if someone reading this should feel I’m plainly wrong, please feel free to leave a comment. I’m always open for arguments, and I might even edit my post if need be.

I had a very strange day yesterday. I feel my physical shape is improving rapidly and started yesterday with daily chores like the dishwashing (we have no dishwashing machine yet) and laundry for the first time post-op. Of course, I got tired really quickly, and the dizzyness didn’t make it easier to do things. First part of day was good and up-beat.

The latter part was more downbeat, and in an attempt to analyze myself I will tell you about an episode that gave me much to think about (yes, this is the therapeutical part of my blog   )

We sat down for a game of “Settlers of Catan” in the evening, and things weren’t going my way, gamewise, so I became a little grumpy (I don’t like to loose…  “shocker”   ) and I felt my opponents were conspiring against me. Then, during the game, I caught my opponents talking about what I had done in my last operations (in order to figure out what kind of cards I might have on my hand). I confronted them with this, did I hear correctly? And I got an immediate confirmation. That fired me up immediately. I got angry, and asked them not to do that, and that it was deeply unfair, since I could not follow their conversation properly. They tried to tell me somethin more, but in my I-was-right-about-my-suspicions offended game-rage, I brushed them off. What I failed to learn at that time, was that the conversation that had actually taken place, was a mock-conversation. One was thinking out loud, and the other made mock comments.

After the game I made some obviously unwelcome comments (still being angry, and feeling victimized by a unfair conspiracy that I believed at that time to have been acknowledged and apologized for) about the game strategies of my opponents. The result was that I hurt some feelings and we had to work our way through my misunderstandings. (I react strongly on unfairness, and therefore also have great compassion for others when I’m being unfair to them)

After understanding and acknowledging the REAL situation, and that I had been somewhat mistaken, I had the visit of what I call my old demons; the emotions called: SHAME, EMBARASSMENT, GUILT, SADNESS, HUMILIATION, SORROW and REGRET.

(this post got too long, the next part will be published tomorrow.)

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

The mental aspect

After a continuous rise of mental health throughout 2007 and the beginning of 2008 I think it is good in one aspect to get a setback. Life contains both ups and downs and what defines people is how they deal with both. I did a good job on the upside, and now I want to do an even better job on the downside. I owe it to myself, my son, my family and all my supporters out there.
My psychological therapy started in 2006 after a full breakdown. At first it was about getting myself up on my feet, and then I needed to learn to walk.
This down period I’m into now, told me one thing clearly: I need to learn to walk on my own. I have become somewhat dependant to the psychological therapy, which can not be good in the long run. So the goal for me now is to start detaching from the whole therapy thing. Time to think about throwing away the crutch.

I’m still afraid of the CI-procedure and what will mentally happen to me during the fight for bilateral which I expect will end in a clearly defined NO.
(I know I’m pessimistic, but to me this is the reality I need to face: it is not common procedure these days to get simultaneous bilateral CI in Norway. I don’t want to raise my expectations, because I know the disappointment will be difficult to bear. I’d rather fight the bilateral fight, and then become positively surprised if I manage to argue well with the deciding bodies of the political and medical bureaucracy. So the process of detachment from therapy starts now, with a goal of ending it sometime next year. I don’t go there every week, so I have a good starting point in that manner.

Political development

Things will happen this autumn and winter. I think I will save the details about that for later more detailed posts. But I think it will be interesting and maybe a little bit exciting. I can tell you this much: I have been interviewed about the whole “waiting for CI”-thing, and it will be published some time next month, I think… Will of course translate this article from Norwegian and post it here for you all to read. Hope it stirs up some debate, that is for sure!

Vestibular disorder symptoms I have experienced

I came across an interesting website for an organization called VEDA (VEstibular Disorder Association).  I found this list of possible symptoms that is very interesting.

Image copied from “vestibular system.” Online Art. Encyclopædia Britannica Online. 23 Jan. 2008
Here is an explanation of the Vestibular system.

I did not initially place all these symptoms into the same category (i.e. having to do with my hearing), but maybe I should have??? I exctracted the whole list and will excempt (a strikethrough line) those not experienced by me. If commented, the comment has been marked like this.

This list was a revelation to me… It all fits, kind of… Seems it connects to the wiring of the vestibulo-cochlear nerve: the nerve that carries information from the inner ear to the brain. Also called the eighth cranial nerve, auditory nerve, or acoustic nerve. If the “recruitment”-theory in my previous article holds water, the information about these symptoms could also have some bearing on the subject of my condition.

Vision

• Trouble focusing or tracking objects with the eyes; objects or words on a page seem to jump, bounce, float, or blur or may appear doubled
• Discomfort from busy visual environments such as traffic, crowds, stores, and patterns.
• Sensitivity to light, glare, and moving or flickering lights; fluorescent lights may be especially troublesome Very much so!
• Tendency to focus on nearby objects; increased discomfort when focusing at a distance
• Increased night blindness; difficulty walking in the dark Yes, have to find walls or points of support in order to be able to move, get a complete feeling of immediate disorientation
• Poor depth perception

Hearing

• Hearing loss; distorted or fluctuating hearing Well, that’s not exactly news…
• Tinnitus (ringing, roaring, buzzing, whooshing, or other noises in the ear) Very much so!
• Sensitivity to loud noises or environments Especially high pitch like childrens voices
• Sudden loud sounds may increase symptoms of vertigo, dizziness, or imbalance Yes!

 

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?

Mentally drowned

Feeling of defeat is not a good feeling. Yesterday I attended my fathers 60th anniversary celebration and had some experiences with my hearing, or rather, the lack of hearing…

In the days up to his celebration yesterday, I had my son with me as I usually have every second (extended) weekend. This time I really had my hands full just dealing with my son. Not that he is raucous or anything. But my strengths go only to a certain level these days as demonstrated yesterday. I was supposed to bake a cake to the celebration, which I had voluntarily said I would bake. And I really wanted to do it, too. But the thing with my memory when fatigue hits is that it’s very similar to what happens when one has depression; performance is poor…

Luckily one of my brothers has gotten a knack for baking himself lately (as he is expecting his firstborn I guess his domestic consciousness arises   ) and the cake supply was sufficient.

Family members who hasn’t seen each others for a few years have a lot of catching up to do. Usually I try to arrive a little early, in order to be able to have a few words with whomever gets in before there’s too many. This time the weather was bad with blizzard so the drive took it’s time…

I sat down in the couch in the corner (always try to avoid getting any sounds behind me) and could not distinguish anything that was being said around the table.

Being happy to see relatives, wondering what had happened in their lives lately, I guess I tried too hard in the beginning. I quickly got tired from trying to follow conversations.

My blessed super girlfriend sees right through me, and could tell how tired I became just by looking at me. She made me aware to take a rest by turning my hearing aids off. But in a situation like that it’s nearly impossible to be able to rest, because my eyes do most of the work. I scan the room to see if anybody has their eyes directed on me, if they are talking to me. And every now and then someone does talk to me, and I turn on my HA and lean forward to try to decipher what they ask me…

After a few hours I was shot… Simply shot….  No strength left, and I was on my “emergency battery”. I told everyone that I had to leave because I didn’t feel good, and I gave them a quick explanation. I’m lucky to have a understanding family.

But the feeling of defeat was quite heavy. I felt forced to withdraw before I wanted to. I hated it. But it was necessary…

Yesterday it was clearer than I ever have experienced… It is very difficult to describe the state of my condition then, but I’ll give it a try:

If you take a whole pack of chewing gum and chew on it a whole day you know you are bound to have an aching jaw, ok? This was quite a similar sensation: the side of my head felt like it had been pounded by someone with boxing gloves for a few hours. Headaches (on the sides, around my temples), a sensation of dizziness and all sounds was kind of like painful. The sounds were unpleasant and felt intruding and annoying.

Today, as I write this, my head still has this ring in it. I write this now even before I have gotten out of my bed, because I know that not before long, I will be mentally too tired to conjure any text like I want to…

It’s a hellish place to be… Like being forcefully drowned mentally. And because the transition to deafness is so slow for me, I have fallen in some kind of trap, by not being able to protect (get CI) myself in time.

But here I am, and I have to take care of my son, myself, and keep on with my life. I know there is a solution for me up ahead with the CI, and it can’t come soon enough!!!

I have high hopes for 2008 to be the year when I either get word of when my first CI will be inserted…

I need it badly, as confirmed yesterday….

Technorati Tags: fatigue,near deafness,CI,cochlear implant,senses,hearing,condition,sick,symptoms,out of it,drained,unpleasant

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

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.

Pre CI-op. seminar

I spent 3 days last week attending a course about CI and how to deal with the long waiting.

First of all I must say it was a good seminar. Especially since I met a woman who has already been through the ordeals of having the CI-operation on both ears. She also works as a physical therapist specialising in psychometric movements, and knows a lot about the stress the body endures when being deaf or near-deaf. It was great talking to her and getting to know her. Inger Anita Herheim (formerly known as Fjose) is her name, and I guess there are a lot of people in Norway who owes her bigtime. Being a tremendous asset to the CI- and hearing-case in Norway, that’s no wonder.

Inger Anita had a task at the seminar, and that was to teach us techniques for handling stress and tension related to our condition. I have encountered Inger Anita once before, at another seminar at the University of Oslo, where she did the same thing. I had a revelation. As I’m prone to get headaches and suffer from severe fatigue, I’m one of her targets

I need a few things to start on the exercises she taught us, and as soon as that falls into place, I’ll be happy to report more in detail here later.

Moving on….  The seminar dealt mostly with the thoughts that the participants had. We shared experiences and stories in group sessions. Important information came to light:

• Even the most dedicated and engaged spouse or relative could not possibly, REALLY relate to how the condition of near-deafness actually affected the person with impaired hearing. The consensus was that only through group sessions with other relatives, and in dialogue with specialist (such as physical therapists, audiologist, psychologists etc) who could explain various aspects of the condition, more insight could be reached. More information to relatives from both the near-deaf themselves and from various fields of expertise is strongly needed.
• In the light of the previous point; the same applies for work-places, governing bodies of our societies and in media.
• All participants shared the experience that information about CI, about various official and medical services that could help and so-forth, was scarce. The rule is that one has to find out everything for oneself.
• Participants also agreed that in many cases the life-situation of the near-deaf could be so difficult that help would be needed from a third party to get into programs and to get general help. People who should have information and give suggestions (like primary physicians (your medical doctor) and bureaucrats in the well-fare system) more often than not, FAIL to do their job in this aspect.
• Near-deaf people need to REPORT their needs even if it’s not there in the first place, in order to make the needs visible to politicians.

I might add more later if I remember more….

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???

From HardOfHearing to deaf – the symptoms

First of all – your audiochart will show that you cannot hear sounds with less than 90 dB in most of the range of where the human voices has their frequencies.

My hearing is almost all below 95 dB. On both ears. The range frequency is from 125 Hz (deep bass) to 8000 Hz (high pitch).

The biggest and most difficult symptom to become aware of, if your hearing slowly degrades like mine, would be the fatigue. I for my part couldn’t understand why I kept becoming so tired. It took many years to understand.

I did everything I could to improve my health over the years. Changed my diet. Exercise (which I have done on and off for more than a decade now, fortunately). Minimized intake of alcohol. Focused on sleep hygiene. The list can go on….

And still I was dead tired… I pushed myself harder, thinking this will pass. Eventually the pushing of myself became a habit, and all of a sudden I had erased my own limits of when to step back and take a breather. This led to a collapse, mentally.

The mental signs would be, of course, the tiredness, followed and accompanied by loss of cognitive skills (I use Su Doku to check my brain to see if I’m able to work them out). One might also try to read a book. If you’re not able to keep the eyes focused and conentrate on the content of what is being read, well, maybe time to relax?… Short term memory becomes worse. (I have learned to cope with it by using strategies like making people send me SMS or e-mails, writing down lists and using a my PIM a LOT!!!)

(A PIM is an akronym for PersonalInformationManager. My PIM is my mobile, I enter all my appointments, names of people I’ve met, numbers, adresses etc. Also my computer is a great tool when also syncronized with my PIM)

Further on with mental symptoms following the fatigue caused by overcompensating for lack of hearing:

Sleep-disturbances has been a big issue for me. A psychologist helped me through that…

Stress-tolerance declines and declines until something is done. This is just like a “burn-out” we hear about when people has been working too hard for too long. With low stress-tolerance, even a trip in the car becomes a huge straining factor. Only to commute to and from work can be so tiring because of the stress that it wears one down even further and harder….

I for my part was also prone to invent strange thoughts about other people. Suspiciousness, mild paranoia, anger towards people I love etc etc. There are many things that can relate to this, and the cause isn’t solely related to the hearing alone. But it has some bearing obviously.

Because the hearing declines, one also becomes more of an outcast in social situations. Being in a place with a lot of people, and almost never understand what everyone is laughing about can be hard to cope with. And when that happens over and over again, it is easy to fall for the temptation of faking that you understand. It’s part of social interaction. It’s normal to want to be part of the group and wnat to interact…

Last but not least (for the time being) is frequent headaches. They’re secondary symptoms to stress and fatigue. Headaches can also be caused by tensions in the body, also muscular and skeletal pains has become big issues concering my health recently.

I write a lot here… I think I have more in store about this, but for now, this is enough, since I’m tired…. (of course   )

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…

The process of understanding speech with lipreading

A while back I underwent a test called the IOWA-test at Briskeby. Briskeby is a state-funded research and education center for deaf and hard of hearing. The IOWA-test shows to what extent someone utilizes the technique of lipreading in the process of understanding verbal communication. I scored 50% (with no audio). I will post that and other documentations here as soon as I get around to prep them for this blog…What dawned on me today is that I use the same method for compensating my lack of hearing with the lipreading as I do with the audio that I’m capable of capturing.

To explain it I need to use the analogy of a computer that understand speech:

When I meet someone new, I immediately start recording their speech. Then I decode their speech: The intonation, the accent, the dialect, the volume, the size of their voice, the frequencies and more (than I’m aware of myself I’m sure).

This is a constant process in my interaction with people.

The recordings are put into a database (ie. my own memory). As someone speaks, I pick up similar pieces from the database to compare what I just heard with what my database has recorded. If it’s a probable match, I assume I perceived it correctly.

If it’s an unknown word of phrase, I record and save in my database after making sure I understood correctly.

If I’m mistaken, I correct my database, or add a new recording for the purpose of being able to compare that word spoken in that particular manner at a later time.

Ok, that’s the basics of the guesswork I do when audio isn’t 100% (which is almost never).

With the lipreading it’s a little simpler, but the process is the same. I record a video of facial expressions along with lip, jaw and tongue postions/movements.

When someone I know well, suddenly talks a different language, I always get huge problems in guessing what they say. It usually takes several repetitions and an additional explanation or translation before I’m able to put together all the segments of the word that I did not perceive.

The better I get to know people and the better they get to know how they can facilitate their speech for me, the better the rate of guessing correct by using pieces from my database.

For someone to facilitate speech for me means that they take a pause if something noisy comes by, like a streetcar or a bus. It means that they don’t cover their mouth with a cup of coffee or a glass or their hand etc. etc.

A little upset…. (my political manifest?)

My liaison in NAV made a remark in an e-mail today which upset me….

To take first things first:
1. Most things I do that involves verbal communication (which is pretty much everything) takes great effort, and when I get tired I need a lot of time to recuperate.
2. I have been able to make my liaison at NAV SYA (he has a hearing disability himself and seems able to symphatize in my position) understand that I need to start with one day work per week.
3. I have also been able to make my new “employer” HLF understand the same thing.
So far, so good…

This is the remark made by my NAV liaison: About one day per week is too little, and it is difficult to defend such small working percentage “to the system”. He should work 2-3 days per week. Otherwise it will be too expensive…

What the? Too expensive???? Oh, so you rather want me to lie down and do absolutely NO work? Will that be cheaper for society? THINK AGAIN!

Damned system. What does the system know about my physical and psychic condition?

My ramblings aside, I need to express what I deem is the core of the problem/solution in my case:

The politicians in Norway has stated that they are concerned about too many people live on wellfare even though they could do a little work! More people should work a little they say. Well, here I am!

In response to the Minister of labour and social inclusion in Norway; Bjarne Haakon Hansen’s often repeated statements about his concerns about people who could work a little (but who doesn’t):

and in support to Minister of Health and Care Services in Norway; Sylvia Brustad’s recognition that CI-operations are an important and an socio-economically feasible procedure that will save the Norwegian tax-payers a lot of money by getting people like me fast back to working condition.

CI-OPERATIONS is an INVESTMENT in HUMAN CAPITAL! The longer the wait for CI, the bigger the long term cost for society!
The wait for CI-operation cost money in itself. Also; the longer the wait, the longer the rehabilitation period equals even bigger costs.
Some cases take so long time that people give up, they enter a state of hopelessness they never recover from, even if they one day finally receive a CI-operation…

My political manifest:

Norway needs my skills and my work capacity! I have 10 years of IT-experience, and a lot of IT-certificates to show for. Norway SCREAMS for more IT-skilled workers today! My working capability WILL improve. Just give me time and space to adjust and find my foothold and balance in life, will you???

AND GIVE ME MY CI-OPERATION TODAY! That way I can exercise my communications skills without feeling like I commit a slow suicide. That way I can heal, recuperate and get back to normal worklife a lot faster!

Instead of being a liability to my society, I can (and want to) become an asset! But I need help, and I need it faster!!!!!! Not tomorrow! TODAY!

I want to work!
I want to be useful!
I want to remain in the workforce and use my brain.
I want to stay in there and fight for my life!
I want to contribute to the best of my abilities!

I DO NOT want to destroy my remaining health in the process!
I DO NOT want my son to have a father who is too tired to nurture him properly!
(I ABSOLUTELY REFUSE to neglect my son! You hear me???) 
I DO NOT want a life where I merely struggle to survive from day to day.
I DO NOT want to be subject to suspicions that I am lazy or exploiting the wellfare system. (I am part of the solution and I’m dedicated to it, are YOU?)

I was hoping to get a good nights sleep, but the de-humanizing system that results in remarks and directions like the one I described at the beginning of this posting made that a long shot… It aggravates the hell out of me, and this posting is the only way I know of to get it off my chest and into the worlds public consciousness…. Where it belongs….

And then maybe I can find sleep and rest, in order to be able to function yet another day…

Brief News

The process with NAV SYA has resulted in an agreement with HLF (Hørselshemmedes Landsforening – Organization for hard of hearing in Norway). I will begin working there shortly.

This is happy news, and I feel that given my condition, I will be able to stand in that jobb, since they better understand what I’m going through…

Getting help

Nav SYA (the department in the Norwegian state wellfare agency that helps disabled people to a working life) finally set me up for an appointment last week. That was a big relief. To meet someone who understand my challenges and my situation completely.

You see; my disability is invisible, and there are a lot of myths, misunderstanding and most of all, lack of knowledge about it. I don’t blame no one, it’s just the way things are these days. It’s changing, but those changes takes decades.

Ok, moving on; it is a relief to be “seen” as the person I am. As a person who has gone against the odds for years, and to be fair, I have achieved a lot while I was able to work. I haven’t achieved “great” things, but what I achieved was great because I did it despite my invisible disability.

I never let my near deafness define me. I had a normal childhood, I went to regular schools and I had no friends who had hearing aids when I grew up. I listened to rock music and was into street-skateboarding. Just a normal kid. 
In my working career I managed to work my way up the ladder to become a Chief IT Operational Manager for a medium size Internet Programming / Consulting company in the dotcom years. (Which in Norway counts about 50 – 60 heads)

I never let my disability define me…  Hmm, I wanted to do what everyone want to do.
By not letting my disability define me, I simultaneously did a very normal thing. It’s called self-denial.
Theres two sides to this; one thing is to not define myself as a disabled person (whichs is mostly a good thing), the other thing is to define myself as a person with NO disability whatsoever (which is the self-denial part). That prodigy has caught up with me since 2001 on up to today.

What has hit me mentally recently is the process of recognizing the truth about myself and learning to live with that. Theres nothing new to me practically. Of course I always knew that I am hard of hearing, because obviously I use hearing aids all day long every day. Ever since I was 3 years old.

The new aspect is the recognition of the fact that my hearing is slowly disappearing. And that it is inevitable. No point in denying that to myself.

From defining myself as a normal guy, I now am forced to take into consideration the fact that my hearing is disappearing. That is no easy mindtrick, let me tell you. The psychological term for it is adjustment disturbance or disorder (somewhere in this lane…. http://www.psychnet-uk.com/dsm_iv/adjustment_disorder.htm).

I’m wasted, will write more later. My ears have started to hurt again this weekend. No external factors, and the pain kind of “enters” my head too. I wonder what this is… Is it a sympthom of some kind? Is it only a mental thing that manifests to my ears and gives slight headache?

I will investigate….