I thought that I would float this out there in cyber land to see who was winning and who was surviving and who is living.
I keep in contact with a chap who I met in the ENT. He went from being fit, healthy and enjoying life to what could only be described as a "broken" man. His life was good and he was enjoying retirement. He used a gym in the park shoulder press and tweaked his neck. He then got a roaring noise in both ears. He says that it is like standing next to Niagara Falls 24/7. Four months into his journey he can only leave home twice a week to attend a mental health support group. He goes to bed and hopes not to wake up. Clearly this is just surviving. I have been in that dark hole so I can say that I know how he feels. I am sure that a lot of you will empathise with him.
For me winning is the next stage. I don't think that I have won but merely learnt lots of ways not to loose. i.e. I am typing this with YouTube dawn chorus playing in the background. On loads of meds, radios in most rooms and a sound box playing wave music at night. Have a tinnitus masker so that I can watch Tv. Pink noise/brown noise Cd to play whilst driving the Car. So for me winning looks a bit like the battle of Rourke's drift. It is energy sapping as you will know. Not so much winning, but not loosing.
As for Living, it has taken a while and many bad days. I posted last week about putting lots of good stuff in the memory bank to look back on. This I am doing. I am back doing most things that I used to do. I am not having as much enjoyment because of "you know who" but at least I feel that I am living.
For me winning is doing the thing the T tries to stop you doing. Living is doing the things you enjoy and T has not interfered with it in any way. For me this is high energy things where my brain is given lots of stimuli.
I have tried to support my friend and make him believe that he will soon be "Winning". He is not believing this at this time.
I would be interested to hear your thoughts on Surviving, Winning and Living.
Regards
Ade
Written by
ade-the-pade
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I am 'Surviving' probably 5 days a week trying to deal with Hyperacusis more than the Tinnitus. The other two days are either 'Winning' or 'Living'. I will admit that today I am 'Living' which is a rarity since this journey started for me but it's nice to feel this way. I hope I get more days like this. I really do. 👍🏻
"Grin and bar it" Would be the short answer. My left hear has fluctuating high pitched sound that interacts with the noises around me. Noises, such a rustling paper sound really loud. A bit like nails on an old fashioned blackboard. It gets right into the nerves in my teeth.
Ear plugs don't work for me as they trap the noise inside and without back ground noise it grows. At work, I listen to very low music via an ear phone in my left ear. I use a t masker in the evening. This is set very low but it means that I can watch the telly and concentrate.
I found that listening to Dawn Chorus on You Tube to be very good. They is no rhythm or tune so the H gets a bit lost.
I know that everyone has there own difficulties but I can put up with the T in my right ear. The H is the won that stops me Winning and Living.
Re tinnitus, I'm winning. But I'm one of the lucky ones who only get tinnitus when it's quiet unless I get impacted ear wax or other health problem [shortness of breath due to my airways resulted in what I would describe as 'wind tunnel' tinnitus last year].
Morning. Great post. I am a mixture of surviving and winning . I used to be 75 % living until 6 months or so ago when I had to give up work . To the outside world I guess I am 70 % winning - I have just moved house and still sometimes see my friends. But I have had to stop working apart from a little bit of freelance that doesn't cover half the bills, can't go to Forest , pictures, town, see my friends with you g children because they screech ( as infeed they should ), cafes unless very quiet or cinema and conversely now Country Park because too quiet but....Interestingly as I wrote the things I can't do any more the % kept having to be changed . Internally I am just about surviving - each day having to physically and mentally grit my teeth and get through each hour, fight back the tears and put on the proverbial brave face and smile. To Live for half an hour would be bliss 😊 Hope as many of you can live for sometime today 😀
That would be lovely, but I don't see it happening anytime soon, ENT are useless in my case and my VRT appointment which I'd waited months for was cancelled on the day as I arrived at the hospital!!
You will get mixed professionals along the way. I had a chief audiologist tell me just to "ignore". I had to see an emergency doctor who asked me why I was so worried about a benign condition.
Hi Ade, such a thoughtful post which sums up how I feel. I try my best to win and some days I do. But then it seems that I have dropped on the snake - I see it as a game of snakes & ladders! I dread if I go back to square one as the pain in my head and body was so alien and intense. But, we just have to cope don't we.
I hope that you are having a really good camping holiday with your family ~ you have the weather for it!
Camping was fun. Loads for my memory bank. The kids loved it. Camp fire and marsh mallows a plenty. My ears are now buzzing with the lack of sleep and no T maskers.
Ah bless, sounds like great fun. Lots of memories for your children. My children are now 29 and 22, but how I cherish all the holidays we had together. I managed to get them to agree to a holiday in Majorca - just the 3 of us - 5 years ago before my son went to uni. They survived a week with their pensioner mum and what lovely memories! Glad to read that it was a winning time. Last week, I was surviving, then it turned round and I am winning again! Love, Angela xx
Surviving - it feels like every day's a battle to get to 9pm when I justifiably go to bed and not have to listen to this racket. No fun for me and not much different for my wife & kids.
Sorry that you are just surviving. I know what it is like just trying to get through the day. Longing for the relief of "sleep". I would be counting down the seconds to taking my pill. I then would wait the 20 mins for them to kick it. Next day, start all over again.
I have more days winning but still drop back to surviving.
Hi Ade, I too am a mixture of both surviving and winning with more recently tending to survive. I have the odd rare living day ( or maybe an hour or two). A few months back I was more living with the T , with times of winning and at times surviving but now with Hyperacusis and increased T all has changed and most days now seem to be surviving. Hoping to be winning again soon and living again. Best wishes to all
Most definitely winning! I had tinnitus from January until May of this year and it took me to a very dark place. The worst thing I kept reading is that there was no cure, this did nothing but greatly exacerbate the condition, I can only describe my tinnitus as raging during those months and found it very difficult indeed to cope. Tackling the sleep depravation with a noise machine was the first step of my recovery and then fortunately amongst all the predominantly depressing information and stories on the internet I came across Julian Cowan Hills blog and youtube videos. I urge anyone with Tinnitus to seek out his blog/videos out and learn about his own journey with Tinnitus. They were of tremendous value and comfort to me.
I also took up Qi Gong (Chinese exercise) in May and the condition has done nothing but improve since then and as yet I don't even do it on a regular basis, again please look into the benefits of Qi Gong in relation to Tinnitus. These things have helped me greatly and with belief and patience I am sure they can do the same for everyone with this condition. Good luck everyone!!
Morning Ade, just one more tip that worked for me, make a conscious effort not to read anything negative or that will encourage anxiety, completely ignore it! Fear anxiety and anger are all great friends of Tinnitus and will perpetuate the situation., Good luck on your journey to recovery!
I am surviving just, used to be very fit, outgoing and fully competent in my job but now life is a constant battle just to remain on top of despair. I have roughly 10 crap days with the loudest high pitch scream in my head and if I am lucky I get a couple of days of respite. Nothing really works so it is just a mental war and it is wearing.
No silence, no peace and very poor sleep. I think I have aged 10 yrs in the past 4.
I live for a cure or a drug that delivers silence.
Know how you feel. I am 15 months into my journey and it has only stopped for 20 mins one morning. I can identify with the aging. My face is like a road map with stress lines. I have tried most things and long for a cure.
On a plus note, most days I am winning. I have a few "surviving" days a week when life is a struggle. This time last year I was just surviving 7 days a weeks.
At least my sleep is ok. Usually get 8 hrs. Thanks to three assorted pills a day.
Anyway, life goes on. At least people in the group really understand how we feel.
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How far away are we from a decent Tinnitus treatment or even a Cure?? As hasn’t this gone on long enough now!?
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