Another chapter…

Right now I’m writing from my temporary new home: Ål Folkehøyskole. I’m in the process of learning Norwegian sign language. This stage of rehabilitation will take me through the winter up until May 2014.

Why sign-language now, after two CI’s?

girls_signWell, several reasons. Prime reason is that my wife and I found out we had to take some serious action if anything is going to change or improve with me (and along with me, the whole family). The biggest concern now is still severe fatigue (resulting in loss of cognitive skills, lack of concentration and sleep disturbances et al.) caused using the CI’s mixed with tinnitus and other immune system related issues.

The price to pay

missuMy wife pays the biggest price this year, being alone with two children with a fulltime job. I can’t begin to tell you how much indebted I feel. She is just awesome!
Then it’s the being apart from each others that all of us has to endure. Luckily I have my CI’s, and can Skype-chat with my children and wife.

My health, post-CI

Since my last CI-activation, I have focused on resting and getting rid of stress in order to get my energy back. Finding a balance has been my main goal. It has been a struggle (still is), for many reasons. Having a toddler who has trouble sleeping well at night due to medical reasons is one of them.

rehabilitationHealthvise, the situation has improved. My physiscian and the health-system has been able to help me with several smaller health issues that in combination also took a lot of my energy before.

Overall, things has improved to the extent I can tell the difference. But unfortunately, that is still not enough for me to be able to just live my life without concerns about my ability to function the next day. It takes a lot of time after so many years being chronically ill. Years actually.

Rebound

reboundWhat was hard to get into the latter year was the physical exercise that I have known for a long time was overdue. Being chronically fatigued means you just can’t exercise like any other person. In fact it can make your health worse. It’l like when an athlete is overtrained, he has to stop training.

Now I finally have a set of parameters in my life that allows me to focus on that. I am, 10 days into my school-year, well underway with great results and feeling well about it too. Mostly swimming, but also focus on diet and weight. When I get results from that regime, other things will follow, among them; more energy and less impact of winter depression (hopefully). This will be an interesting process.

CI and sign-language?

Yes, they combine well! CI is not only about hearing again, period. It is about hearing as well as you can. It is NOT ALWAYS the total solution. For a whole human being to maximize the profits of such technology, we have to consider the whole picture.

For me the CI presented the ability to hear quite well again after going (being?) deaf for nearly a decade (of which the last 5 years were totally unnecessary, but that is another issue). However, the CI cannot give everyone super-hearing again. For that the technology is still too crude, and the interface between man and machine is too poorly designed and developed. And let’s not forget that the brain is still the boss, no matter how good the technology is or how motivated an individual can be. If the brain has been left without sound-stimulations for too long, the brain develops in other directions, improving other areas in order to compensate. Inserting CI in a lifelong deaf person doesn’t make much sense in that aspect.

social skillsThe key here is SOCIAL HEARING. The ability to apprehend speech. I have trouble maintaining a meaningful conversation if there is other people speaking nearby, or if there is ambient noise around me. I can push and strain myself and achieve a fairly good result. But it has a very steep price; fatigue.

Ambient noise wears me out

Ambient Noise, With Sprinkles_sWith CI, I perceive all sounds around me, like I have never done before in my life. The sounds of an airconditioner, wind woshing in the trees, various creatures moving around, kitchen utilities running, children playing/singing/etc are all sounds that mixes with what I need; speech from someone communicating with me. That mixing of sounds gives the brain a lot of work, which in turn makes me quickly tired. Then add the tinnitus (which "fogs" incoming sounds too), the brain’s previously adapted compensating techniques of lip-reading, putting togheter pieces of comprehended words, guessing the missing parts etc etc. This all adds up to a bill that is simply too big for me (and my brain). It’s just not sustainable.

I can’t function solely on CI for a whole day, let alone the rest of my life. hat’s why I’m learning sign language now; I need yet another compansation technique! One that supports all my other communications skills.

The biggest part of sign-language

The biggest "challenge" of sign-language for my family isn’t me learning sign-language. It is providing my family and people around me with the opportunity to learn it too! I’m fortunate to have a wife who understood this before I did (at least she was the one who saw the necessity for taking the big leap). Without her understanding, support and initiative, I would still be sitting home being tired all the time. But the support-system in this regard is just too weak and unsupportive here in Norway. We can do so much better.

aslsignfamilyCommunication is all about social interaction. We as humans are social beings. Without social interaction we are unlikely to be happy and contributing. The meaning of life is to live the life among other human beings, experience emotions and so on and so on. One person getting socially isolated is a burden for us all, not just the one.

One deaf individual in a hearing community, can be a loss for the whole community. One deaf family member can be a loss for the whole family. Thats why rehabilitation of deafness also includes those around that individual.

 

to be continued….

Nedsatt hørsel? Sliten? Kurstilbud

Nasjonalt senter for hørsel og psykisk helse arrangerer mestringskurs for deg med nedsatt hørsel. Oppstart januar 2013.

Nedsatt hørsel innebærer for mange en kontinuerlig kompenseringsinnsats. Du må kompensere mentalt for den informasjonen du mister, du kompenserer for muskulære anstrengelser i nakke og skulder, for nedsatt balanse, du bruker energi på å lokalisere hvor lyder kommer fra osv. Stress og følelse av utmattelse forekommer ofte i kjølvannet av nedsatt hørsel.

I forbindelse med doktorgradsprosjektet “Mestring av psykososialt stress ved hørselstap” har vi utarbeidet en kurspakke basert på kognitiv terapi og erfaringer vi har samlet fra hørselshemmede gjennom studien.

Dersom du er interessert, nysgjerrig på dette kurset – eller kjenner noen kurset kunne være aktuelt for, nærmere informasjon:
Sidsel Haaberg, tlf. 22 92 35 02/951 57 782
Maj Volden, tlf. 916 20 315
Jenny Meling Hansen, tlf. 941 54 472

Kurset koster egenandel (for tiden 307,-) pr. samling – opp til frikortsgrensen.

Se for øvrig: her.

Hearing Loss Linked to Three-Fold Risk of Falling – 02/27/2012

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 »

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….