Pinch me! Slap me! Am i Dreaming?

I just got the long awaited letter from the CI-team at Rikshospitalet! YES!

Finally!

(read on below   )

The long wait is over, and I can now start to look forward to the beginning of the process of becoming a candidate for CI! (sounds like I’m running for the presidency, and in many ways it feels that way too! THIS IS BIG!)

Phase one of the pre-screening, pre-qualification process starts april 28. THIS YEAR!

Then followed by phase 2, which in turn should end up in me being qualified for the procedure AND A NEW CHANCE TO HEAR AGAIN!

I have to tell you, I started crying when I realized what the letter said… It was a good cry!!!  I’m so happy it just happened to be a day when my girlfriend was with me. It was a day to remember, indeed! Thank you, my dear, for being with me and sharing that mammoth moment with me!!!

I love you, my love!

 

I needed to share this with the world today!

I want to thank everybody who is reading my blog for all the support, comments, insights and INSPIRATION you provide me! Abby, Jennifer, Jeff, Sam, Roberta, Arnt, and many, many others, you know who you are!

And to everybody close to me in my everyday life, thank you for being patient with me and supporting me throug this!

Since 2006 I’ve known this day would come, but I still can’t quite comprehend it. I’m in a mild state of shock, I guess

HAVE A GREAT DAY EVERYBODY!

What to think?

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

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

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

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

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

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

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

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

Christmas 2008 – 36 months in waiting

As the end of 2008 nears, I have this summary for the year.

Still waiting for the CI. Still have no date. Still on the brink of deafness. Still struggling in everyday communication situations.

Despite this, life is pretty good. I’m extremely grateful to live in a country like Norway, where I’m provided for. I’m not happy about the waiting part, of course. But I’m able to pay my bills and buy presents for my loved ones and even take a trip to my friend in Norwich, UK for the Christmas and New Years Eve!

Personal life is really good with a new, promising and really exciting relationship. This awesome woman might be "the one"! So I’m very, very happy about that and look forward to the next year for that reason alone. I miss her achingly bad right now, but this trip to UK was planned even before I met her, and we both have "family circumstances" that requires us to take things slow and spend this holiday apart… 

Health wise, I’ve regressed somewhat, but that is because I feel some strength returning, and have an urge for getting back up and on with my life… Neck and shoulders are troubling me. I started swimming again, but evidently the body isn’t quite there yet.

But I keep telling myself; take it easy, don’t exhaust yourself again… It’s not easy to take it easy for me, but I’ve become better at knowing when I’m tired and need a break. Still working on that issue I guess.

Had a round of pneumonia and a couple of common colds so far this winter.  That is not normal for me, but then again, "everybody" has been sick this year… That stopped my training for a few weeks. I’m looking into why the neck and shoulders are hurting as they are. Buying new pillows, trying out some dietary supplements for joints and muscles for people who are exercising… It doesn’t seem like the training itself is the cause, because the pain is still there after a few weeks of no training…

My guess it’s the stress from trying to keep up with conversations and common verbal communication. (you know; protruding my head, in order t signal that I have trouble hearing you, or signaling that I didn’t hear you. It’s just that mimic habit that is hard to stop. It affects my whole body posture… Head forward, shoulders slumping forward, upper body bent forward, looking into the ground… I arrest myself, but when I get tired, it’s back again…)

And now the flu is on it’s rise, newspapers in Norway report…  Ah, bring it on, and let’s get it over! It’s good for one thing; to keep the immune system on it’s toes and in tip top shape, isn’t it?

When I return to Norway, I will investigate in how much longer I have to wait for the CI-operation.

I have a few things going on in that regard. Will report on it here on my blog when something real happens.

It seems like 2009 will be the year I get my first CI. Can’t be more specific yet…

So, to all my readers:

HAPPY NEW YEAR!

Status update III – part 3 of 3 – Social life and Society

My social life suffers. I decline offers of going out with friends, I withdraw early from family assemblies, isolate myself from communicating with people in such occasions. This depresses me. But I live on the knowledge of that it’s a passing thing, and that one day I will be able to participate as I used to again…

I have placed a lot of hope in the CI-surgery, but must not forget the possibility of that I cannot get the operation due to “factor X”. If that happens, fine, so be it, then I have to learn sign-language and bring my family in on it… No problem with that, it will only take longer… And the rewards lies elsewhere than in being able to hear again, I’m sure.

It is a test of character to wait for Rikshospitalet to get around to operate on me. The last months events has not been much fun, and it drained me of energy and tested my motivation. But I think I have come out on the strong side of it.
I’m nagging and nagging at the best of my abilities. I do not wish to cause a conflict or anything like that. That would only hurt myself. I do what I can do with the situation I have at hand. The rest is up to destiny.

I’m currently waiting for my contribution to the health-debate in Norway’s premier news-paper Aftenposten to be published. I look forward to publish it here on my blog, but will wait until it is published in Aftenposten Aften (the evening issue) first.

I still await answer from the state secretary Roger S. in the Norwegian Treasury Department to my letter about countermeasures that I think should be taken to address the problems I have experienced. I still have a hope he will see himself fit to read and to respond to my short letter…. He is a busy man, I have no doubts.

I am hanging on to myself and my sanity, and thanks to the people I care about the most, I am able to cope. Considering the challenges I face, I feel I’m doing a pretty decent job of it. I pat myself on my back

I will persist, I am patient and I will persevere. I will be stronger and a better person as an outcome of this trial by fire.

I live on love.

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.

My son, the papparazzi

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!!!

A new feature to the blog

  Poetry in a picture….

This picture was taken today as I was x-mas shopping with my girlfriend in Førde, and sendt directly from that spot using my mobile to this blog. This is possible thanks to ShoZu, which in my opinion is incredibly cool! Easy to set up and VERY easy to use! Works with Facebook, WordPress and several other blogsites.

Expect to see more pictures from me on this blog

Technorati Koder: photo,norway,poetry,emotion,blue,pink,mountain,ShoZu,WordPress,picture,cool

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.

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!

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!

Un-hear

How can one describe a permanent condition to someone who does not have that condition? If this condition is all I know, how can I know what the difference is?

The condition I’m speaking of is the residual hearing I have left. Just to be very clear on this matter: I have compared audio-charts with people who are totally deaf. They cannot on their life perceive a sound through the hearing-organ. My chart is basically identical. Yet I can talk to someone in a relatively secluded surrounding almost like a person with a normal hearing. I’m a bit puzzled by this myself.

The fact is that I’m deaf, but I can listen to music, hear sounds on films etc. Now, what do I get from the music? It’s clear that I do not hear what you hear, right? Well, my audio-world is unique, and I am at the brink of total deafness. It’s slow torture.

Right now my head is pounding. An area from just above my ears, going up to the top of my head is pulsating. The pulsating sensation is not like a headache, but it’s very similar. I can sense it down to my teeths and jaws.

I tried listening to music today, and I had to shut it off at once. I just couldn’t bear it. Felt like having stuffed my ear-canal with waxed-cotton, standing inside one of those old phonebooths with a boomblaster at full volume. Too much sound and too little space.

 Today I have a day of relaxation after a weekend with my very energetic and playful 7-year-old son and my girlfriend. The weekends is supposed to be a time of recreation, relaxation and fun. And it was, total bliss, really. Being with the people whom I care for the most in my life, and loving them and they loving me back. But, for me it now feels like I have been through double shifts of hard work all weekend. So now I really feel like I need a weekend after the weekend. It seems I’m good at mobilizing and channeling my strenght to where I need them the most.

I’m still struggling to feel when enough is enough.

Anyway, the sensation in my head does feel more physical than psychological. My ears are practically hurting, and for the first time in my life, it seems that having NO SOUND is the ONLY thing I can do… That is… Well, to be frank, IT SUCKS!!! Up to now I felt like I had a choice; preserve and rest until I need or want to hear. Now it’s just survival.

I know it’s a passing condition. I’ve had the sympthoms before, and they pass and I feel better againg for some time…

Still no reply from the hospital, and I’m growing impatient. I’d like to have something to relate to, like a future date for examination. I also feel reluctant to take any actions on this now. That is a surplus-task.