How am I doing, 8 days after bi-lateral surgery

A lot of people asks me how I am doing, so I better post an update Smilefjes
If you want to know more about Cochlear-implants, click linked image below to read more…

pic-cochlear

Compared to the first surgery I underwent in 2009, this operation was a walk in the park. My surgeon specializes in gentle surgery, and I can tell you, my first CI-surgeon was a butcher compared to Dr. Med. Marie Bunne.

Some of my blog posts from the days after my first surgery (listed by date of publishing): day 3: Feeling beaten up… , Day 5 – From dull to sharp – in many ways , On the operating-table , Post-Surgery and The Day after , Tinnitus maximus terrorismus and some of the other posts from 2009 mentions the problems with balance (Oct., Nov. and Dec. 2009).

The upside

I have been up and about ever since day two. Today, 8 days after, I’m starting doing the annual accounting work for my company, nageldata.no. In other words, back to work, even if it’s just tedious easy work… First surgery had me bound to bed for two-three months!

The surgery-wound dressing fell off two days ago, and I didn’t bother replace it, since the wound is dry and looks beautiful. I mess as little as possible with it. It is itchy from time to time, but I just rub the skin close to the stiches, that’s enough.positive-attitude

Sleep has been good, except for the pain. The first nights I was, just like after first surgery, just deep into the sleep (medication plus recovering from surgery trauma). Bliss. Now it’s slowly getting back to normal, that is; waking easier by smell, light or movement. I expect pain from pressure from head lying on pillow on the “wrong” side disappears in a day or three.

I’m looking forward to a much quicker recovery this time, and that is not wish-thinking. I have plans to take up swimming as soon as the wound is healed and stitches are gone. That will speed up balance-recovery as well as improve the tinnitus-situation.

Speaking of tinnitus, there has not been much difference in tinnitus this time. The first surgery was followed by an explosion of tinnitus, mostly in the operated ear. But also in my left ear, due to the sudden silence (I could not bear to use the hearing aid, it wasn’t of any use. On the contrary, it was outright painful. This time it has been a few episodes in the newly operated ear, but they have been mild, like they were before the surgery. And there is the same constant sound it has been the last two years, sounding like a power relay station, that humming sound.

The downside

negative-space-9I’m dizzy, on the verge of nauseous. It’s quite constant, but I can’t move my head too much, or it’ll get much worse fast. Especially looking up/down, is a movement my balance-organ doesn’t like very much.

The suspected migraine aura thing is just around the corner most of the time. It feels like pressure behind my eyes, and the eyes feel very dry and almost as if it has been overexposed to direct sunlight (the words snow blind comes to mind). I have become much more vary of the symptoms now, and make precautions such as turning lights off, resting or taking time-out. The surgery didn’t make it worse in itself, but the dizziness combined with this migraine aura is very tiring and debilitating.

glassy_soundSound in my first CI is different these days. First i thought it was because I had a flu-bug since 3-4 days before surgery, and finally got rid of it on day 6-7 after surgery. But the “glassy” sound is still there, and makes me a little bit annoyed with speech-sounds. I isolate rather quickly these days. (Sorry about that, wife Trist fjes ) While writing this I’m force feeding myself with Pearl Jam, even though sounds make me feel dizzy. I just want to give it massive amounts of sounds in order to get my brain to get over being seasick. It’s really exhausting work, listening to something I really like, while the sound itself makes my head spin Trist fjes Something has changed inside my head again, that’s for sure. I think the pressure from the fluids inside the newly operated ear has an effect on both the vestibular system, as well as my inner ear. I suspect the situation will normalize sooner or later.

Tired, or constantly near-tired, is my mainly prevalent condition these days. I’m somewhat used to it, but after being on my road to (very slow) improvement the last 12 months, I realize that it comes with a rather significant mental price.

grumpyI’m back to being grumpy, quickly irritated. Having said that, these mental symptoms are milder this time, compared to after the first surgery. I think being aware of the above mentioned is half the cure. Also previous experience helps. I know somewhat what is happing, the anxiety isn’t as strong because of that. The rest of the cure comes when my physical condition improves and I’m going back to cognitive therapy in February again. Well timed, and I hope it will not be too many sessions. I hope to be finished with it for good before summer 2012.

Family life

My wife (we got married December 18th 2011 Smilefjes ) is my greatest support. I might have days where I just want to be left alone and not have to relate to anyone, especially in these recovery weeks. Having a family, including a 10 weeks old baby: Joanna, is more a boost than a burden. It reminds me of what I really want in this life, and how it could have become: without CI and the chance to hear again, I would be in a very dark place. Sure, I would have found a way to be happy and function, but it would probably been a much longer and harder road.

Ulf_091010_0204_biggerNow I get to be a father of a wonderful baby girl (not forgetting our two boys eitherSmilefjes), I have a great deal to look forward to, and I have the special one to share it with Smilefjes and her family as a new branch of my social network as well Smilefjes

I feel I have beaten the odds (of my life) in many ways, but half of that victory belongs to my beloved Mette too… Without her never ending patience, her loving care, her endurance, her positiveness, her stubbornness, her dedication and all those other things, we wouldn’t be where we are today.

Thank you for your love, love!!! ♥♥♥

Status update IV – early autumn 2008 – part 3 of 5

Physical health

Up to a few weeks ago my whole body felt good and I was without any chronic pains for the first time I can remember in my adult life. Back pains are gone, and the last remaining symptoms with muscle pains in my thighs has disappeared.
Headaches, the severe light sensitivity (photophobia) and some other smaller symptoms related to vestibular disturbances also diminished this last year. Even my worn knees are improving painwise, ie. they don’t pain me as much as they used to. I can almost run and almost walk the stairs without pain. All in all, this summer was a great physical experience. This last year I have taking a break from any physical training, because my body told me in the fall of 2007 that it couldn’t take anymore. Even swimming gave me muscle and skeleton pains. Clear signals that I could not ignore.

This summer, part of my vacation was in Poland with good friends and together with my son. We went on a one week trip to an area with great biking trails. And we went on long bike trips every day. This time my body responded well, and I have now started training again. Swimming 1-2 times a week, and some bike trips in between. I look forward to loose a few kilos this winter, instead of gaining them. My knees, who are still protesting in stairs, will thank me for that.

I stated earlier here that I have regressed a little, and this reflects and manifests itself in my body physically. My neck has become stiff again, and my shoulders are constantly aching and uncomfortable.

I keep waving my arms and tilting my head in all directions in order to keep it “loose”. I suspect that these symptoms come from stress are related to the breakup with my girlfriend. She means a lot to me, but the long distance relationship we’ve had since the beginning took it’s toll on our love. She couldn’t bear it anymore. I don’t blame her and I’m not bitter. She made me feel much better a whole year in this very tough part of my life. I hope I made her life better too. I think so. Even though her breaking up with me is still a little mysterious to me. I wonder what would have happened if I had gotten that CI long ago??? Would I have become happier and have more humor and strength? The future will tell what happens to me after the CI-operation.

Parenting, oncoming deafness and it’s effect

I am a single parent. I just had my son over for an extended weekend before he takes a long summer vacation with his mother.

My son hasn’t reached puberty yet, and hence has a boyish thin voice… Unfortunately this is the kind of voice that strikes me the worst, since it is in the frequency-neighborhood where I’m loosing hair-cells in the cochlea nowadays. It is the frequency of my tinnitus and it’s where my hyperacusia hits me the worst…

He is a joyful kid with a lot of energy. He has tried my hearing aids, and understand that it hurt my ears that he shouts, but as most kids, he can’t remember everything at once.

I have to hush him when he forgets. Which he follows most of the time (unless he is upset with me).

What troubles me in this, is my own condition. As a result of having my son around, I quickly become exhausted, because as most kids he likes to communicate, and we talk… He is signing some, but it takes effort to learn the signing properly, so it ends up with help-signs only. I don’t I have the energy for learning it… It’s a paradox… I need to learn it, but I’m to exhausted to even go to school once a week (I tried!). The only thing that could help me is the operation, and for that I have to wait…  It’s so wasted to wait!!!!  Aaaarggghhh!

Anyway, the hyperacusia and the recruitment and the following fatigue affects me mentally, and sometimes I can loose my self-control a little, ending in me being too harsh or too abrupt in my reactions. So I find myself using more energy trying to stay in control, rather than raising my son and using my energy positively. I don’t feel like I have a choice…

I have to use the first hours of my days do get things done, because by noon I’m exhausted and

run on will-power and love… At his bedtime I feel like I have the mental capacity as a drunk… Reading-time I have to do without any sound… Just listening to my own voice hurts…

This is not a “normal” life… I need that operation now!

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

tinnitus2 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.

My un-sound condition – pre CI era

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

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

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

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 🙂

radThen 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)

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!

 

Read the rest of this entry »

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.

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…Cornered_20Kitten

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…drown2

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….

The sum of 2007 – Happy New Year!

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

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

The year 2007 gave me many good things:

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

The year 2007 gave me a few downturns too:

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

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

Cold on cold winters day

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

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

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

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

ist2_2899227_welness_massage_stonesI do exercises on a daily basis to prevent back and neck-pains. I have gone a few rounds with my physician, and have been able to determine that my right knee has a injury to it that needs closer attention. I guess I’m simply more bodily aware than ever before, and that is a good thing, because I need to optimize (compensate) for the secondary impacts of my near deafness on my body.

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

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

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

Link to Spine-Health, about common cold and hypochondria

In sickness and health

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

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

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

When common cold occurs, one is likely to get an increase in internal pressure in the neck/throat region due to various swollen glands. This in turn puts pressure on internal organs in the head, hence headaches, light-sensitivity and REDUCED HEARING. When the cochlear has more internal fatigue-736871pressure where the hair-cells are situated, the gel-substance that carries the sound waves to the hair-cells is a little less sensitive. That means that the overall amount of energy that reaches the hair-cells in cochlear is being reduced.

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

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

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

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Fatigue epiphany

epiphany

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

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

Emotions:

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

The emotions manifests into:

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

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

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

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

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

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

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

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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.

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.

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

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

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

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

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

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

The importance of the eyesight when deaf

Three days ago I tried contactlenses for the very first time. I’ve been using glasses since the age of 13, so this was a new experience… Because of my reduced hearing I rely heavily on lip-reading as an aid to understand the spoken words.

My use of eyesight does a great deal of compensation for the lack of hearing since I learned lipreading techniques as a kid. The “IOWA”-test I did about a year back showed that with the hearing-residue I have, combined with lipreading I got a close to 90% score on understanding speech without ambient noise present. (I fill in the remaining 10% with qualified guessing) With noise present it dropped to 60% and without lipreading it was 0% perception of the spoken words… Conclusion: I rely heavily on lipreading.

Mother nature has given me eyesight that has declined throughout the years. Last time I got my eyes checked was three years ago, so it was long overdue. The new lenses give me much better sight without the hassle of scratches, fingerprints and greasestains from the frying pan.

It takes a little while getting used to, but after three days I can say that I wish I did this two years ago. I think some of my fatigue, headaches and general strain derives from the lack of following up on my eyesight. To be honest, I didn’t think of it before my girlfriend asked me to consider lenses since the glasses get in the way all the time when we want to kiss 😀

As with mye hearing, the eyes also degenerate into poorer performance so slow that it is virtually undetectable in everyday life. I’ve learned a lesson: do not assume that your senses are allright, go get it checked at least once a year!

So yet again, something that I have to thank my great fabulous girlfriend for!!!!

Thanks for being in my life sweetheart!

All senses alert

Lately I’ve been plagued with tension-headaches and extreme fatigue. The headaches I cannot pin down to one cause, same goes for the fatigue-episodes. It seems like all my senses are so alert that it’s on the verge of being hypersensitive…

That goes for mye hearing too….  I’ve had to stop listening to music, alltogether. Only a short time of music gives me headaches. And I turn off the hearing-aids as much as I can…

I will monitor my eyesight much more often and I will start to use contact lenses in the hope that it will lessen the strain on my eyes… It’s obviously very important for me to eliminate any cause for unneeded strain on my senses, since the fading hearing clearly does something to me.

I’ll report first impressions after contact lenses has been used for a few days.

an allegory of the last string of hearing…

Recently I have tried to explain to people close to me how it really feels to loose the hearing the way I do. And I have become quite inventive and in the light of my newfound inner strenght, I have also found the courage to be honest about it to myself as well.

In that aspect, I keep getting these epiphanies. Here’s one in the form of an allegory:

Imagine a ordinary glowing light bulb. Most of us have experienced that sometimes they get this extra light strength.  You know it’s a dying light bulb… And if you turn the light off and then attempt to turn it on again, it won’t be glowing anymore. The bulb had a glorious shine before it died.

The same way, only in a longer timespan, it feels with my hearing. I complain about my mother’s high voice, or when kids yell like they’re 20 meters away from me even though they sit next to me. It is close to painful, and it makes me quickly more tired. Other adults around me do not react

I think my hearing-aids creates sound that is a little too much for my hearing organ (the eardrum and the connected parts that form my inner ear) to carry. It worked for a time, but with every new generation of new hearing aids, I crank up the volume a little. Now it’s obviously enough. On top of that, I think my brain desperately tries to wring every decibel out of my ears. That gives a combination of cranked up hearing-aids and a brain running wild!

It might be that my brain actually overcompensates and give me a form of oversensitivity as the last remnants of my glion hair cells  in the cochlea slowly are becoming unable to transmit the effect of sound vibrations…

T his is merely an attempt to explain how it feels and how it is. In time I hope I will find even better allegories or ways to illustrate the process I’m in….

I’ll keep searching for an understanding and an explanation…

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.