My story got published

A few weeks back the latest issue of the membership magazine “Din Hørsel” (“Your Hearing”) was sent out to all members of the Norwegian Association for HoH. In this issue is an interview with none other than yours truly 🙂

I’m proud to be a small part of the fight for better medical care for people who need CI in Norway.

So far I have received no official responses to this. I keep hoping it’ll tickle into the minds of the people in positions to do something about this difficult situation that hundreds of people like me are enduring here in Norway.

I will of course translate this article to English, but you have to be patient with me, since I will be attending a school reunion this coming weekend.

I’ll be back!  🙂

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Status update IV – early autumn 2008 – epilogue

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

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

Status of Tinnitus: rather unchanged.

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

General health, back to regular training

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

High permanent stress levels leads to immune system deficiency?

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

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

The mental aspect

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

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

Political development

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

Status update IV – early autumn 2008 – part 4 of 5

Everyday life – restlessness

I’m more stressed and restless. The feeling of social isolation is stronger than ever, and I’m more sad. It’s not depression, because I am able to initiate things and engage in activities that are good to me. The positive experiences about my body’s reactions to physical exercises this summer came at a good time, because up here in the north, the autumn is generally a rough time because it’s get much darker so quick, and thus it’s important to be in a good physical condition in order to avoid Seasonal Affective Disorder (S.A.D) which I had to some extent during my early adult life.

Training in the swimming pool will give me a positive reaction this autumn and winter, I’m sure. Hopefully the stress will be reduced and I’ll be able to relax properly again.

The CI-operation

Lost love is one part of the rough spot that I’m living right now. The other part is that earlier this summer, I had great anticipations about getting really close to my turn at the operating table for the CI. Not so. As things have turned out, the budget cuts at Rikshospitalet that I wrote about here earlier has slowed down everything. Instead of operating according the what the Norwegian Health minister ordered (at least two operations a week), the speed slowed down to one operation a week. So current status to my operation is that I can expect something to happen next year around summertime… One whole year more than I thought my worst case scenario would be when I started this blog… It takes some time to wrap my head around this. And it takes a whole lot of effort to not go negative about this, too. I do my best.

I have patience…

“Wait in the power of knowing what is possible…. Do not waver…. Remain steady… Remain true to your goals and allow life to carry you. That which is worthwhile is sometimes created slowly.”

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.