Which battles do you fight?

It's past 04:30 in the morning as I write this post - yet another sleepless night. It's been many of them since I got T in June. No sleep is my average these days.

I was sitting up watching a movie called Jackie Brown (Quentin Tarantino/1997) that had a lot of retro soul music in it, my type of music. Then I suddenly got very depressed and sad, like a carpet of sadness fell down on me. This T condition creates a lot of emotional response and I felt sad because the music reminded me of better times, a period in my life where I had bought new speakers and used music to cope with the daily problems in my life - I remember how I felt about my problems back then and sitting here now they seem all so small compared to dealing with T. I know I shouldn't wander down the days before my T road, but I must admit it is difficult not to think of better times.

It also made me think that the main problem for me isn't necessary the fact that I hear a constant loud sound now, but rather that I battle the eternity aspect of it, I think I could cope with this if I knew I would have it for 7 years, but for the rest of my life? Now that's a tall order. In my better periods I think that no one knows how long I will have it etc. I couldn't produce any of those positive feelings tonight. I'm a grown up guy and I have battled some serious things during my life, but nothing gets me down more than thinking I will have T for the rest of my life, so that's why I shouldn't think like that, but I am only human. My face were all wet from tears during that movie and when I shut the TV off I was just staring into the dark. Yes, I broke all the rules and felt sorry for myself. I guess it was impossible to fight.

Which battles do YOU fight? What do you find the hardest? Would be interesting to see what you all are dealing with mentally in your world of T. Sometimes it puzzles me that individuals can react so different to experiences in life. Some people can cope so better than others, so the mental aspects are obviously crucial when dealing with serious blows in life. I just saw a news report about a 61 year old guy that lost both his legs all the way up to his waist because a post truck ran over him, he was sitting there in his hospital bed giving an interview and all he could say to the reporter was that he never felt any anger towards the driver that hit him and that living without legs would be quite okay, much because his way of looking at life was so positive. He added that he didn't feel any pain so it was okay. I thought "well, he is past his youth and he probably has a lot of support from his family and I don't have anyone." I must admit I played with those feelings but what also struck my mind was how different we are in context of dealing with setbacks in life. What would that guy say if he got severe tinnitus? What would be his survive strategy?​

Thinking positive is the only way to go but sometimes I also need to let out some steam, after all the brain is producing fear and depression as part of living as well. These past weeks have been an emotional roller coaster and a lot of times I think it would be better to have a life threatening decease, at least then I could get to hear doctors say "we will fight this thing with this treatment and that usually kills the virus" etc. I would give so much to get that definitive hope instead of the eternal fear perspective. Some would probably say that I'm ungrateful to be alive. Others would perhaps relate to my kind of response. Feel free to share your thoughts on this.

 

I understand how you feel.
It's very easy to write on a forum like I am doing now, be all positive and act like you're amazing at dealing with T...
but trust me I go through all the ups and downs like everyone else.
By writing on this forum I realize the steps I take in life to stay positive, when I never really think about it otherwise.
I also hope I can offer help to others through my writing.

I see photos or footage of myself before T, it reminds me of well being.

My mind lives in the future. A great thing for interests and planning.
This is generally a healthy mindset.

It becomes destructive as soon as your future thinking takes over how you feel NOW. You may think to yourself
"oh it can only get worse" or "will I ever be normal again" or "my quality of life with family will not be as good"...

so wait slooooow down. Why do we feel the need to think up a negative outcome. In the meantime you can only feel worried - what if it never happens? You've just created a fake scenario that is leaving you miserable in present time.

With T you need to live in the moment. Save future thoughts for your passions and interests. Memories of the past should be a reminder of who you really are... nothings changed.

 

I also see my past photographs and handwriting and think that I was so happy at those times.I have also seen so much struggle in life but never felt so depressed because every problem was timebound.Recently I baught yamaha home theatre and projector but I could not enjoy these gadgets and T started.My weekends which used to be so enjoyable are totally gone. I am not planning any thing for future till I get adapted to this new problem of T.But still hope I will get over it .

 

@Deep,

That's wise words. The future has not happened yet and I agree that it's quite destructive to make up the future with negative assumptions. I wish I could apply that philosophy each day, but it's been tuff. I was just about to celebrate a large milestone in my life when I woke up with severe T. I have never heard T noise before alltough so many scientists and doctors say we all have T in our lives. I don't agree.

Thanks for the positive input.

 

@hps,

Adapted and/or habituated seems to be the bird word. Hope you one day will be able to enjoy your home theatre system, as a matter of fact I stopped listening to music the 17th of June cause of T. But perhaps that's wrong? I would presume that music on a lower to normal decibel level would be ok? I put on my headset getting ready to try to get some sleep, when I pressed play some music came on cause I had exited the T masking sound folder - that created some tears. I exited the music and entered the masking sound folder thinking "is this really my life now?"

 

'Sleep' something we take for granted until robbed from it night after night - most people experience sleepless nights at time - new baby - stressful time - money worries - and so on - BUT most things come to an end - work through or you find a solution - this T thing is cruel so cruel so its endless - it never goes away in real terms its just we have to learn to ignore it and accept it ! HOW hard is that - at 4.30am when everyone around you snores and you feel jealous and desperately want sleep !! Well last night for me it was 12.30am - until when - I have no idea - I have stopped clock watching I have NO idea how much sleep I got ! Or didnt get .......

That's how I cope I don't put a figure on it - last night I got some sleep enough to cope - maybe - not enough as I would like - definitely - not as much as I used to get 20 yrs ago - that's for certain ! More than my husband - defo no way he sleeps for Britain !! Do I feel bad ??? Not enough to cope with the day but yes enough to wind me up at 1am 2am or whatever time it was when I tossed and turned listening to what I can only describe as a 'wine glass having someone run their finger round the top - half full !!

Is this for the rest of my life ........ probably .......... in variance degrees - what's the alternative ??? Well prob not a cure in my lifetime - I hope there is a cure for my children's generation in-case in 30 years they experience this ! Can I cope - don't have a choice really - do I feel sorry for myself - YES at times why not its 'crap' totally a shitty thing to have - bad nights and good night we should have an 'app' to contact others who cant sleep that takes into account time zones !! Awesome Idea

I hope you get a better night tonight @Per - but if you don't and depending where you are in the world probably one of us is with you in spirit ! xx

Keep strong - we are all in the same boat together and just need to keep each other going xxx

 

Per there is still hope. You and I both got our T in June of this year. That is still too soon to tell if it is permanent. I think there is a possibility that it can go away or get better with time. There is a BIG possibility that in a year from now you will be much better. Oh, I don't let it bother my sleep. I think that sleep is one of the resources I have to get away from the constant eeeeeee! I just focus on it so much that I lose interest and think about other things then I zonk out.

To answer your question about battles that I fight. I too get depressed over this constant ringing. Last night was the first time that I almost cried because my T is more louder and pronounce from the first time I got it. The idea of it never going away and only getting worse as we get older dragged my spirit down quite a bit. I do have some strong signs of habituating because mine is mild/moderate and I could only hear it when it is really quiet or if I put my ear on a pillow. That's one of the things I'm going to miss sleeping on my side. Now I have to sleep on my back. The worst part for me is when I forget I have it. I go through the day feeling all happy and good then when I go into my room and lay down. Boom!, it's there screaming and reminding me that I am not okay. It's a big time downer. Another crappy thing for me is when I am out having fun doing things then when I close the door to my car and pause for a moment the ringing is there going hey you I'm still here. Tinnitus is such an @$$hole.

 

@Alxtan,

I so understand your battle and I recognize your description. My pillow has become an amplifier too. So many things we need to change in our life's, it's all in the numerous details in life. Stuff we took for granted before. Like closing the door and feel silence.

I'm looking forward to getting habituated - sometime in the future. I'll try to use that as a concrete positive goal and inspiration, something to look forward to is really what we all need. A cure is the ultimate, but if the cure is almost 100% habituating I will be pleased with that. Many times I hope for an Einstein looking genius to wake up with the Eureka response in the middle of the night, running down to his basement laboratory and make the cure serum for us. Professor Baltazar, where are you?

 

The battle I fight is not letting is get worse. I work in a noisy environment every day, sometimes with completely unexpected noise peaks. If I can not let it get any worse I will have won, in a way. I'm 25, I've got a long way to go. I can cope at the level I have, but with mine being caused by noise damage, it would be very very easy to let it get worse.

 

Read all the above , all of us ( with vocal tinnitus) can relate to this.

There is a saying that comes to mind. I am not sure where it originated from.

When you experience physical or mental pain it's like being shot by an arrow.
When on top of the physical or mental pain , you resist it and resent it ,its like being shot by a second arrow.

In my case I am always being shot by the second arrow.

Peace.

 

That's the word I was looking for, amplifier. Yes my pillow is an amplifier. Ugh it sucks! I don't like closing the door in my bedroom too. My bedroom turned into this soundproof room that I try to avoid as much as possible. I dread visiting my Mom's house because her house is so quiet. And we all know that's the Tinnitus' playground.

Yes, Per we have to stay positive and keep on telling ourselves that this is not the end of our world. I think acceptance that we have it is the first step in getting us through the habituation process. Anyhow at this point we really have no choice but to accept it. This is our shared reality now let's make the best of it. I know it's easy to say but hard to do. I'm struggling and mine is even considered mild. Like the saying that Bacus shared I am in the second arrow category.

The way I feel about my T is like being shot by an arrow but not being able to ever remove it at all. The arrow stays forever through the flesh fused to the bone. That actually sounds like an SNL skit huh?... guy walking around the office with a big arrow stuck on his back or leg.

Anyway hang in there. If you ever want to talk PM me. I can at least help try to get your mind off the ringing.

Take care,
Alex

 

SO with you guys a but your 'pillow' my T is in my left side and I'm a left handed person so by default I've always liked to curl up on my left side snuggle my pillow and sleep - but now as soon as I do this ' its there' that noise that whine ....... I tried popping my phone with masking noise under my pillow on v v low or its too loud - it helped although you then can't move around much if you need the masking noise through the night like I do - can't win either way !

Try a masking noise under the pillow see if it helps ? - Cher x

 

I am simply fighting with volume. My T is now so loud, so I can't ignore it during the day. I am trying to do so, but it big obstacle to cross over. It drains so much energy from me, that I cannot escape from the sound. I can hear it on the busy street, over TV and music on decent volume, when driving car, even in noisy pub.

Oddly, I am able to sleep with this loud noise now. I usually don't use any masking sounds or drugs to fall asleep. But it took 6 months to achieve. Probably remains of habituation and training I had from times, where my T was mild and noticeable only in quiet environments.

 

@Map,

Volume is a big issue. If I could get to a place where my T was 40% lower I would be a grateful person.

 

@Map

What caused your volume jump, if you don't mind me asking? That is my biggest fear. Currently I can cope, I'm not sure if I could if it was louder.

 

@Shuffle

Noise exposure. I had mild T for years and didn't care about it, was visiting loud concerts, clubs and pubs without ear protection. Yes, stupid mistake. But nothing can revert it back now.

Just protect your ears from loud noises. And be careful about medications you will eventually take. That should keep your T on the same volume. Mine was mild for 9 years with no worsening.

 

@Map

I attend concerts irregularly, but only with plugs. I don't really go clubbing, never have. As I said in my other thread, what's pushed my volume up from unnoticeable to noticeable at the minute is going to a wedding and there being a band on, and despite my keeping away from it the volume was enough! D'oh!

 

Same as Per, i think "eternity" is the worst part of it. If we all knew this usually lasts for 2 years or so, we wouldn't even think about it and the acceptance would be so easy.

Even though, i think waiting for a good treatment is also not really positive. We have no idea when a good treatment will be released. As of today, only AM101 looks promising and i guess i will be dissapointed if this thing doesn't get released.

 

...good days, bad days and everything in between. But I also did before I got T...

This is so true!

 

@erik,

I think we need "cheerleaders". It's a relief to receive external positive input, it's like it carries more weight when other people writes something positive. I'm not able to achieve the same response when I try to encourage myself. I try to be of help to others, but sometimes it just gets too hard. Encouraging others is a type of therapy also, so I try to write as many positive words as possible. I read about peoples battle with T all the time and since T is so personal both in volume and character, it's also different in the way it affects us. I guess we can say it affects us differently because we are different personalities as well.

You are absolutely right about a potential cure, if it's a real 100% cure it will be on the news, the internet, in doctors offices (I hope!) radio and here on tinnitustalk.com of course I guess that would generate the need for a separate category called: The cure is here! What a great party that would be, the drinks are on me.

 

@erik

Thank you...thank you....thabkyou....u don't know how much strength just reading these posts give.....its absolutely true about good bad and so so days....it's just that T makes it oh so more frustrating.
@Per
You're absolutely right. Speaking positive to ones self just does not work and that's when we need a place like this and cheerleaders. In a world where no one seems to understand our torment its only US dotted all around d globe who can help each other.

If a cure comes through...drinks...hell I'll throw an all out extravaganza.
Well done guys...know that your words atleast helped me

Cheers