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

My 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.

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

Promising results for tinnitus treatment

With the use of magnets, in so called “repetitive transcranial magnetic stimulation” (rTMS), a trial run has showed promising results in the treatment of tinnitus.

Read more about it here:

http://www.thedeafblog.co.uk/2009/02/magnets_stop_the_nightmare_of.html

Status update IV – early autumn 2008 – epilogue

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

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

Status of Tinnitus: rather unchanged.

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

General health, back to regular training

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

High permanent stress levels leads to immune system deficiency?

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

Status update III – part 2 of 3 – Challenges of tinnitus

The tinnitus is a relentless as ever. Recently I discovered a way to explain how it sounds. I came to think of the TV test signals with the one-frequency audio sound. That is on about 1000 Hz and is almost the same frequency as my tinnitus. In other words; I have a constant TV-test audio signal blaring in my ears. I have a suspicion that the tinnitus has changed a little in the frequency the last months. The sound is a little higher up on the frequency-scale than I imagine it was 1 year ago… Tinnitus is the sound of my hair cells screaming goodbye forever. May they be revived upon the insertion of the CI-electrode arrays…

Distractions necessary

In order to distract myself from the tinnitus I either has to turn my hearing aids on and endure the “recruitment” and hyperacusia and wear myself out quickly, or engage my brain with tasks like reading, sudoku, various forms of art (I like wood carving, metal work, drawing, writing, photography and the processing of photographs in Adobe Photoshop and alike. Furthermore I like to get my hands dirty working on

alpine and rock plants on my balcony, plants in my living room, various tasks on our small farm in Sweden. Also I enjoy the diversities of the computer world wether it’s playing a strategy game like Command and Conquer, driving rally cars in Colin McRae Dirt, being a hyper modern deadly soldier in Crysis, or simply surfing the Internet, staying in touch with friends and family via email and IM. The computer is a big part of my life, especially since it was and will be part of my professional life and career. Oh, and “house chores” are also a nice distraction from tinnitus

OK, got a little sidetracked, but what I meant to say is this: I have to constantly distract myself with mental activity in order to keep the tinnitus away from the “alert”-consciousness. That in itself is depraving me of the opportunity to really relax and to build up some sort of surplus of mental strength. The results of this never ending battle with “recruitment”, hyperacusia and tinnitus is first of all extreme mental fatigue. It doesn’t take much to wear me down these days.

Consequences of this condition is that it takes more effort to concentrate. The endurance of concentration is shortcoming. Even concentrating on a dialogue is a challenge. To keep my own thoughts in order at the same time I have to concentrate on comprehending the things being said to me is a challenge. At the same time, my short term memory is failing me, probably from the exhaustion of all the other tasks that my brain is occupied with, thus giving me another task I need to concentrate harder on.

Fatigue and effect on body

The extreme fatigue I often experience puts limits to the extent of how much I can pursue my interests. It feels very limiting and prison-like. But I focus on the positive and whatever gives me joy. Having said that, I know that pondering a lot about the condition I am in isn’t necessarily a good thing. However I am such a person that almost never take the easiest way. I tend to analyze and scrutinize the hell out of anything, and then meet it with countermeasures that are carefully considered and self debated. It is a way of dealing with things that goes well for me…

The physical condition is linked to my psychological condition. The stress fatigue is sometimes limiting my capability of getting myself into physical action. At the same time, I have experienced that last year most of my muscle and skeleton-related symptoms (mostly pains and discomfort) has subsided. I have a theory that my body was in a state of stress just as my mentality was (still is) in a state of stress. My body just didn’t respond well to physical exercises. So last winters absence of extreme training has done me well in terms of reducing pains and discomfort in my back and neck especially, and subsequentially in my legs and shoulders (which was the reason I had to stop swimming regularly, last fall). My focus now goes to light physical activity and just having fun while doing it. Pleasure-driven and not self-forcing hard exercise seem to do the trick for me now. I focus a little more on my diet since I no longer burn so many calories.

Status update II

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

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

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

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

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

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

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

The long walk…

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

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

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

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

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

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

Technorati Tags: postlinguistic deaf,cochlear implant,deaf

Unconditional condition

I just sat very comfortably in my favorite chair in front of my computer for two hours, doing some work that requires concentration. I had no sounds to distract me, since I turned my hearing aids off for the work-session.
I can’t stand the sound of the fans, even though I have water-cooled most of my rig, the hard-drives give off too much heat for the whole thing to be able to run without fans… I think the sound can’t be much more than 17 – 20 dB (according to fan specifications), and that’s a faint sound, really. But my hearing aids are the most powerful there is (to my knowledge) and they’re cranked to the max. (Widex Senso Diva). So I turn them off more and more these days…

The recruitment is killing me if I don’t turn them off.

The tinnitus is there as always, but not really bothering me concentration-vise. It’s sort of comforting, since the sound now has a rather steady tone. (before it was a chaos of frequencies and variations in strength/volume)
Anyway, I sit, my head is not moving, my eyes are only fixated on the screen, and my concentration goes to the task at hand. The first hour goes fine, no problems.
The second hour I start to get physical sensations in my head. It is like pressure building slowly up.
I had a good night and I’m not tired. I have no stress to complete the work I do, and have no deadlines for anything. It’s Sunday

Then suddenly I get these auditory sensations, it’s like a silent storm. I can feel it somehow. Not like pain, it is not unpleasant, it’s just a sensation of very weak electric current in my brain. Like a blanket of electricity sliding back and forth like the radar screen image.  It’s like a soft “wooosh” inside my brain…
The sensation that I have are connected to my ears, and at the same time they affect all of my brain (at least it feels like it does). I have no control of this sensation.

I wrote about this sensation before, connected to a pre-sleep phenomenon. This is very much the same, only now I get it during daytime too…

Seconds after this “wooosh”-sensation I feel dizzy (I guess there’s some kind of activity affecting my Vestibule where the balance-nerves are situated). It’s a weak vertigo, even though I sit still, are at peace with no stress. And I know I don’t have Meniére, thank goodness…

After this my ability to concentrate is worse. It’s difficult to keep a thought for as long as I like. My mind has always been a multitasking one; while doing one thing, my mind has been working out what the next thing I should/want to do… This is impossible in the state I’m in after only two hours of working effortlessly… It’s frustrating for me, because if I’m doing something that gives me a thought that I want to pursue, the short-term memory isn’t working as I’m used to. So when I complete the task I worked on, I KNOW that there was something I thought of doing, like searching for a special kind of information, or look up a certain fact etc. etc. But it’s gone… Sometimes I sit for 10 minutes of more, pondering what it was that ignited that thought, trying to reconstruct the idea for myself… Sometimes I get it, most often I just move on… I can’t let it get to me.

In short it makes me feel like I’m cognitively amputated… The SUDOKU-thing helped me understand this better…

And by writing this now, and concentrating on the subject and all the aspects of writing, I feel I’m pushing myself… I’m starting to get a headache now… This is the part I do not understand at all…

I haven’t heard a sound all morning (it’s now 12.30, I started working at 9.30). I know my hearing is disappearing, and the tinnitus is singing it’s tune. But why is it a strain for me to do something that doesn’t affect my hearing? Why do I get this dizzy feel, why the headache, why the memory-problems, why the multitasking problem, why the feeling of fatigue? Can it be that the optical-nerve also lies close the the nerves of the auditory nerve and the balance-nerve? It is all connected somehow…

My jaws feel like they had a punch (they’re sore, like I chewed gum for a few hours). My temples hurt a little bit. The dizzy feeling is there (but I’m not having trouble with the balance, though).

This state/condition will last all day, until late at night, then I feel better again, but the paradox then is that I need to sleep. I might me tired, but want to stay up because the world feel somewhat more vivid to me. Is it connected to me originally being a B-person? I’m not extreme, have no troubles getting up in the morning whenever… (but used to)

Technorati Tags: recruitment,tinnitus,deaf,cognitive,vestibular disorder,senses,bteha,vertigo,fatigue

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!

 

Explaining the analogy: "Recruitment" of hair cells in cochlea

During my research into my own declining hearing- and health condition, I came across information about a phenomenon regarding hair cells in cochlea called “recruitment”. I strongly suspect “recruitment” is what happens to me. It certainly would explain a lot of the things that happen(ed) to me and my hearing and the fatigue…

(Most of the text that follows is copied from this page at hearinglosshelp.com and edited by myself for the sake of this blog and my readers.)

What is “Recruitment”?

Very simply, “recruitment” is when we perceive sounds as getting too loud too fast. How is it possible to hear too loud when the hearing in fact is vanishing, you may ask… Well, be patient with me and read on…

“Recruitment” is always a by-product of a sensorineural hearing loss. If you do not have a sensorineural hearing loss, you cannot have “recruitment”. In simple layterm this means that this condition only affects those who have a significant loss of hearing caused by haircell-damage in cochlea (mainly).

As a sidenote; there are two other phenomena that often get confused with “recruitment”. These are hyperacusis (super-sensitivity to normal sounds) and phonophobia (fear of normal sounds resulting in super-sensitivity to them). Both hyperacusis and phonophobia can occur whether you have normal hearing or are hard of hearing.

An analogy for understanding how “Recruitment” got its name

Perhaps the easiest way to understand “recruitment” is to make an analogy between the keys on a piano and the hair cells in a cochlea.

The piano keyboard contains a number of white keys while our inner ears contain thousands of “hair cells.” Think of each hair cell as being analogous to a white key on the piano.

The piano keyboard is divided into several octaves. Each octave contains 8 white keys. Similarly, the hair cells in our inner ears are thought to be divided into a number of “critical bands” with each critical band having a given number of hair cells. Each critical band is thus analogous to an octave on the piano.

Just as every key on the piano belongs to one octave or another, so also, each hair cell belongs to a critical band.

The requirements for “Recruitment” 

When you play a chord on the piano—you press two or more keys together but they send one sound signal to your brain. Similarly, when any hair cell in a given critical band is stimulated, that entire critical band sends a signal to our brains which we “hear” as one unit of sound at the frequency that critical band is sensitive to. This is the situation when a person has normal hearing.

However, when we have a sensorineural hearing loss, some of the hair cells die or cease to function. When this happens, each “critical band” no longer has a full complement of hair cells. This would be analogous to a piano with some of the white keys yanked out. The result would be that some octaves wouldn’t have 8 keys any more.

Our brains don’t like this condition at all. They require each critical band to have a full complement of hair cells. Therefore, just as any government agency, when it runs short of personnel, puts on a recruitment drive, so too, our brains do the same thing. But since all the hair cells are already in service, there are no spares to recruit.

Getting to the point – what “Recruitment” means

What our brains do is rather ingenious. They simply recruit some hair cells from adjacent critical bands. (Here is that word: recruit or recruitment.) These hair cells now have to do double duty or worse. They are still members of their original critical band and now are also members of one or more additional critical bands.

With only a relatively few hair cells dead, then adjacent hair cells may just do double duty. However, if many hair cells die any given hair cell may be recruited into several different critical bands, in order to have a full complement of hair cells in each critical band.

 

 

The results of the phenomenon known as “Recruitment” – the conclusion

The results of this “recruitment” gives us two basic problems. (notice the underlined parts!)

1. The sounds reaching our brains appear to be much louder that normal. This is because the recruited hair cells still function in their original critical bands and also in the adjacent one(s) they have been “recruited” into.

   Remember that when any hair cell in a critical band is stimulated, the whole critical band sends a signal to our brains. So the original critical band sends one unit of sound to our brain, and at the same time, since the same hair cell is now “recruited” to an adjacent critical band, it stimulates that critical band also. Thus, another unit of sound is sent to our brains. Hence, we perceive the sound as twice as loud as normal.

   

   If our hearing loss is severe, a given hair cell may be “recruited” into several critical bands at the same time. Thus our ears could be sending, for example, eight units of sound to our brains and we now perceive that sound as eight times louder than normal. You can readily see how sounds can get painfully loud very fast! This is when we complain of our “recruitment”.

   In fact, if you have severe “recruitment”, when a sound becomes loud enough for you to hear, it is already too loud for you to stand.
   

2. The second result of “recruitment” is “fuzzy” hearing. Since each critical band sends one signal at the frequency of that spesific critical band, when hair cells get recruited into adjacent bands, they stimulate each critical band they are a member of to send their signals also. Consequently, instead of hearing just one frequency for a given syllable of sound, for example, perhaps our brains now receive eight signals at the same time—each one at a different frequency.

   The result is that we now often cannot distinguish similar sounding words from each other. They all sound about the same to us. We are not sure if the person said the word “run” or was it “dumb,” or “thumb,” or “done,” or “sun,” or? In other words, we have problems with discrimination as well as with volume. If our “recruitment” is bad, our discrimination scores likely will go way down.

   When this happens, basically all we hear is either silence, often mixed with tinnitus or loud noise with little intelligence in it. Speech, when it is loud enough for us to even hear it, becomes just so much meaningless noise.

   This is why many people with severe recruitment cannot successfully wear hearing aids. Their hearing aids make all sounds too loud—so that they hurt. Also, hearing aids cannot correct the results of our poor discrimination. We still “hear” meaningless gibberish.

   However, people with lesser recruitment problems will find much help from properly adjusted hearing aids. Most modern hearing aids have some sort of “compression” circuits in them. When the compression is adjusted properly for our ears, these hearing aids can do a remarkable job of compensating for our recruitment problems.

Technorati Koder: recruitment,fatigue,disorder,hair cells,cochlea,deaf,deafness,hard of hearing,understanding hearing loss

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!!!

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

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.

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.

Pre-sleep-phenomenon

Oh yes, I have for a long time wanted to describe a re-occurring  phenomenon that takes place just before I fall asleep. Obviously I have taken out my hearing aids some 10 to 20 minutes before…

It is like a switch is being flicked inside my ears and head. Difficult to describe, but I will try…

Imagine you are on a voyage in a plane or a boat which makes a constant high-pitched engine-noise. This voyage takes all day long, and the noise is there all the time. And just before you fall asleep, someone turns that noise off like magic. It’s like landing on soft cotton-clouds after being tossed and heaved around all day… I can feel a “wave” of electric current sweeping from the front of my head to the back, very quick. It’s like the shock of icy-cold water thrown on your head while lying down, only that this sensation is rather pleasant…. Does this makes sense?

This sensation occurs every night just before I fall asleep. When it happens, I know that I’m seconds away from sleeping…. Very pleasant and soothing.

If anyone has experienced similar, I would like to know. If someone has an idea something might explain this phenomenon, I want to know…. 

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…)

Interest Organization for Hard-of-Hearing in Norway (HLF)

HLF (Hørselshemmedes Landsforbund www.hlf.no) works in many ways. One field they work with is by influencing politicians and legislators or more commonly known as lobbying. One aspect of this political work, is to help the various systems understand and see where the problems are.

They publish a magazine. Work with the membership records to keep the organizational data up-to-date. Organize meetings for volunteering hearing-aids users that want to help other people who are just starting to use hearing aids. (”likemannsarbeid” – “common fellow work”)

HLF also runs a school (Briskeby) and holds several seminars and courses for people with hearing disabilities. They also aim at being Norways center for knowledge about - and to have high competence about - hearing-disabilities.

Tinnitus and Mèniére are also in the HLF’s sphere of interests.

In short: everyone who isn’t part of the deaf community, has a home at HLF.

Link: www.hlf.no

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???