Another Random Success Story

These are the stories you don't get to hear, so I thought I'd post it here. I was out on Friday night at the 60th Round Table charter night, which had Eddie the Eagle as a motivational after dinner speaker.

The main story here, is whilst I was at the bar I noticed a guy wearing earplugs (there was no music, just the noise of chatter), so I decided to introduce myself (quite normal at these events anyway, networking etc). I asked outright if he had tinnitus, to which he said yes, but was wearing earplugs because of his hyperacusis. This immediately sparked the interest of another guy who was standing next to me who proclaimed, "did you just say tinnitus!", I said yea, I was just talking to this guy about it etc. He went on to say he'd had loud tinnitus for 10 years. I asked him if he could hear it over the background noise (around 80db), and he said "yes" overwhelmingly. I said, "And me. I thought I'd be the only guy in this room with tinnitus loud enough to be heard". He smiled and said "me too". So, I asked him how he'd coped with it etc, and he went on to tell me how it effected his sleep in the early years, along with all the other symptoms we all know about. He said it took him a few years to accept, but that it no longer bothers him at all.

I wasn't going to post about this, but then I thought why not? These are the people out in society that you never hear from, so I thought I'd highlight his story here for you all to take some positivity from.

Have a nice day

PS, Eddie the Eagle was awesome. His story was heartfelt, hilariously funny at times, and genuinely legendary. I spoke with him for a while and can say he is such a nice and humble person. What he achieved in life is astonishing.

 

Yes. Absolutely I need to hear these stories. Thank you. It's what keeps me going. I am struggling to stay positive at the moment. Maybe its just a Sunday downer but thanks anyway.

 

Thanks Ed.

As I was reading this, I pictured myself trying the same thing at my next networking event if I see someone with ear plugs.

I know my father-in-law has T but didn't know until he learned that I have it. -- He always has music or the TV on and know I know why. He has never complained about it though and that is how I am getting to be with my wife. Why complain if it doesn't help fix it?

You and I have had T for about the same amount of time. -- I think you were the one who said 3 years is when most suffers really turn a corner for the better. -- I'm really looking forward to that day..

 

This seems reasonable until you realize that this behavior muffles the awareness to the point that almost nobody (especially in the medical field) believes that T is a real issue.
It's particularly nasty in the sense that many doctors send you home with instructions to "not think about it" (and therefore "don't talk about it"), even to not look up anything about it on the internet (I've been told that a few times since onset). Basically pretend it doesn't exist.
To me, that leads the patient to suffer, keep everything to him/her-self, and let the medical profession think that people have good methods for coping with it (since they aren't coming back complaining).

On the contrary, I think we should be making noise about this condition. Keep complaining, but with moderation, so it's not counter productive.

When I see my doctors and they tell me "you look better than last time, it seems like you're dealing better with T" I don't hesitate to correct them and tell them "no, it just looks that way because T is invisible, but my suffering hasn't decreased since last time".

In my opinion, minimizing our suffering is doing a disservice to our cause.

 

I'm more interested in what the guy with hyperacusis had to say. I like the fact that he's still out and about with just earplugs on.

 

The way I see it is different though. The medical industry know how bad this condition is; many ENTs and audiologists have it also. They know. How we privately suffer makes no difference, whatsoever, to their research or the speed at which a treatment may be found. We are possibly decades or even a lifetime away from anything significant (I hope not), so in the meantime, just like with bereavement, we need to move on with our lives and accept it. We will never deal with it until we do, and for me personally, I refuse to sit around pissing my life away just waiting for something to happen. We can't have it both ways.

That in no way doesn't mean I don't care. I still post here, I still raise awareness with people I meet (I highlight the devastation it causes) and my GP file clearly shows the impact it has made on me (I have the notes). It's like many things in life that we can lose, it takes time to function again; to find our feet. Once you do, however, you should do your best to fulfil your life's ambitions and not live in the shadow of tinnitus. The research can still be pushed and pursued with a smile on your face.

I am still raising money for research and will never let habituation stop me from pushing for answers.

 

I don't think it's mutually exclusive. You can move on with your life, and still keep complaining and putting pressure on "the powers that be".

If I read you correctly, you are doing exactly that.

 

I spoke with him for about 10 minutes. He said he had severe H and he was laughing and joking at the bar; kind of like the life of the party. I did ask things like: do you avoid going out or doing certain things, and he said "absolutely not". In fact, they were both loving life to the full. People in the Round Table go places twice a month. They go shooting, karting, sky diving, skiing etc.

There's one event I went to which was at a farm, and it was like a mini olympics, setting challenges with loud farm vehicles. Quad bikes, diggers etc. We were in teams and had to go round doing different events where the fastest times won. I'm telling you there are people with serious health afflictions including T and H, and many other serious issues who attend these things; absolutely loving life.

We can have our cake and eat it. Just because we learn to adapt in no way means we don't care about it. I will always fight on behalf of tinnitus because it's a horrid condition.

 

Yea Greg, I don't see why we only have to be 'sufferers' to push for more research. I don't think it makes a difference how we're coping with it; if we want to make a difference we need to step up. In the mean time I think it's of the utmost importance that we carve a life out for ourselves.

 

Ed, don't you understand how it works. You can't have it both ways! Your suggestion is to carve a life out for ourselves and live happily ever after with T. We shouldn't do this because then the "powers that be" think this isn't a crippling disease. We should all go on permanent medical retirement, stating T as the reason! We shouldn't keep appearances of living a life... We should be making sure everyone knows we are crippled by T. Positive attitude and telling people it's possible to live normal lives with T is devil's work, nobody takes us serious.

 

I'm getting back on my mountain bike and my paraglider in spite of H. Not sure about H + quad bikes though...

 

Amber, the medical community know exactly how devasting T and H can be from the historical data alone. Many people have been medically retired because of it from soldiers, to industrial workers (I believe @Michael Leigh was?).

You're mistaken, however, if you believe your own personal happiness has any bearing on this. I have many friends and acquaintances with other, equally, life changing disabilities and deseases who are genuinely happy. One of my friends has Friedrichs Ataxia, and she is one of the happiest, outgoing, people I know. Are you saying because she is happy she is diminishing the chances of a cure for her condition, for which she regularly fundraises?

Equally, there are people that are paralysed, have macular degeneration, blindness, deafness, cancer etc etc, who live happy lives. Their personal life has no effect on the speed to which a cure may be found, and yet they have profound problems in their lives.

One of my moms best friends started going blind at the age of 40. Right now she can only see about 10cm in front of her face and even then it's only shadows. Yet, she is a beacon of positivity. Another friend of a friend of mine, who brews beer, is also registered blind and he is a right laugh to be around. He is really outgoing. He too raises money for the blind; are you telling me they don't take him seriously because he is happy? Are you kidding me? I can go on; a friends wife has had bowel cancer for the last year, and they are booking holidays left and right living life to the full. She doesn't yet know what her long term prognosis is, but she refuses to lay down and let it destroy her. My cousin lost his eye in a nail gun incident, yet he still works and never mentions it. He too is absolutely loving life right now.

They know what T and H does to us in the medical community. The medical retirements and suicides alone indicate what a horrible condition this can be. I can't believe that you've followed me to the 'success stories' section to continue this argument from the other day to be honest. Spreading positive stories like the one I mentioned can brighten people's day, because it shows there can be a life with a profound medical condition. It does not have to be the end of our happiness.

 

Do what you love Foncky. I'm glad to see you're getting back out there

 

So many folks (including me) have to do with tandem paragliding because we can't go at it alone.

To be able to paraglide by yourself is such a wonderful thing. I hope you can enjoy it again.

 

As a side note, I'd also add that me and the guy with H were comparing earplugs (had a bit of a discussion on the pros and cons of foam vs molded). Not the kind of thing I envisioned happening when I left my house that evening.

 

I might try to raise a little bit of awareness through my "coming back", we'll see. Because that's a challenge even though those activities don't seem loud

I'm not able. I just do it

 

A paradox

In all seriousness though, sometimes that's how it is. As long as you're moving forward I'd mark it as a success.

 

Ed, what are the pros of foam plugs then? One could think that it's hard to get better/more comfortable/etc hearing protection than custom molded plugs.


I love this success story! Thank you so much for sharing it.

 

Nice story @Ed209,

Considering earplugs, i'm confused too. I use this musician type earplugs with filter. I don't feel protected to tell you the truth. It's like i don't wear earplugs at all.

 

Foam

Pros:

• Good overall decibel reduction
• Cheap


Cons:

• Uncomfortable
• Can overly muddy the sound in some situations (hard to have a conversation)
• Need replacing regularly
• Occlusion effect is strong


Molded

Pros:

• Superb sound reduction for hearing speech
• Can use different filters for different environments (including solid caps which take them to around -33db)
• Last four years or more
• Dramatically reduces the occlusion effect
• They are comfortable with a perfect seal

Cons:

• Expensive (filters are also easy to lose and are expensive to replace.)

 

Depends what filters you're using and how loud the environment is really. Personally, I've got 3 sets of filters (10db, 17db, and 26db) and solid caps (33db). I change them depending on how loud the place will be that I'm visiting.

 

You are correct @Ed209 I was medically retired from my employer many years ago and wasn't pushed out as some people might believe. They tried their best to help me but my tinnitus was too severe to carry on working.
Michael

 

Was the tinnitus severe in the sense that you were simply unable to concentrate properly to get any work done? Or was it more to do with anxiety about the T?
I'm currently preparing for important university exams and finding T particularly distracting when I'm trying to revise. Hopefully if my anxiety about it improves I won't notice it as much.

 

@Krish230 My tinnitus was too severe to get any work done and also caused a lot of anxiety. My employer send me to various doctors over a period of time for assessment and eventually I was retired on medical grounds. When tinnitus is mild or moderate many people are able to cope with it. However, when it is severe and this level is sustained it can become very difficult for someone to work.
You might find my post: My experience with tinnitus helpful https://www.tinnitustalk.com/threads/my-experience-with-tinnitus.12076/
Michael

 

This is a bit scary. I can just wake up one day with severe T and my career is over. Woooho.

Tinnitus is awesome 0/10 would not recommend.

 

Life is problematic @maltese Tinnitus does not necessarily mean one's life is over and is set for doom and gloom. One has to try and carry on. There was a time my tinnitus was so severe I wished I'd go to bed and never wake up. It took 4 years for me to habituate the second time. When my consultant said: "You are the second worst patient that I've seen with tinnitus" I was close to breaking point. I asked for her candour and I got it. She vowed: " I will never give up on treating you". She kept to her word and never gave up on me and I never gave up on myself. Please read the post below to get my meaning.

Positivity and Tinnitus.

For some people prolonged intrusive tinnitus can be very stressful and at times debilitating. This can sometimes lead to depression and a person may need to go on a course of antidepressants. I have often been asked in tinnitus forums and via email “It is great if you’re able to be positive, but simply telling someone to be more positive about tinnitus isn’t going to change anything”. I want to clarify here and now, that isn’t what I mean.

Thinking more positive about tinnitus and bringing positivity into your life takes time it isn’t achieved overnight or by simply thinking to yourself “I must be positive about my life”. If a person wants to improve the quality of their life they have to be prepared to try and help themselves, because there is no wonder drug or operation that can cure tinnitus at this time. Unless a person faces these facts they will forever be trawling the Internet going from forum to forum complaining why there is no treatment for tinnitus when actually many of these people want a complete cure.

I once read a newspaper article that mentioned: nineteen out of twenty medical conditions cannot be cured. Someone once told me “I don’t want to be positive about tinnitus, I hate it. Being positive wont make it go away". This is true, however, thinking more positive and bringing positivity into your life will reduce the perception on how you relate to tinnitus. CBT and TRT are based on having a positive attitude, without that these treatments aren’t effective. Long before CBT, TRT and the Internet came on the scene Doctors have been telling tinnitus patients, there’s no cure you’ll have to learn to live with it. Most of us know this is easier said than done. So how does one start to think more positive about their tinnitus and to bring positivity into their life?

The fact that someone with tinnitus is reading this page suggests to me their tinnitus for today at least isn’t so intrusive that they are unable to function, for that I’m pleased because this is something positive, instead of lying in bed on medication doing nothing. If you are able to work that’s even better as your tinnitus isn’t so severe you’re incapacitated. I see this as something positive in a person’s life. Being able to earn a living and support yourself. Therefore, you’re able to do all the daily tasks one needs to survive in this world. You may have some difficulty granted, but you’re still achieving and that's progress. It is still better than someone that is visually impaired or severely disabled and unable to earn a living. Or, people with severe tinnitus that are depressed and on medication and unable to work. So by looking at our own circumstances and seeing what we’re able to do and achieve we can think more positively about ourselves. There is nothing more satisfying than being independent and I suggest you hold onto those thoughts.

If you live by yourself consider getting a cat or a dog so your home environment won’t feel so lonely. If you have a partner and family think about spending some quality time with them, as this can help reinforce your sense of belonging, and the love that binds you together, then your T won’t make you feel so isolated. Sometimes opening up sharing your thoughts and how you feel can help immensely and keep negativity at bay.

I have just given a synopsis of what I believe can help a person’s quality of life improve with positive thinking. It doesn’t happen overnight but a lot can be achieved when one is prepared to try. By moving forwards and taking one day at a time you can occasionally look back and see how far you have come.

Michael

 

Knowing about it and doing anything about it are two different things though. It's easy to say "yes I understand how horrible this must be for you". What is hard is to do something about it. Compassion, whether fake or not, requires very little effort.
I've witnessed it myself: the doctors look at me and nod "yes I understand" and then send me home without any actionable lead.

In the "big scheme of conditions" T is abysmally represented (just pick any metric: funding, awareness, research papers). Why do you think that is?

I'm not convinced the medical community really understands our predicament, because they seem pretty satisfied with the current set of options that exist to "treat" patients with T (masking, CBT, mindfulness, etc).

Since I've acquired this condition I tune in to radio shows or TV shows or any other media that talks about T "to the masses", and with no exception, they put on a good show and try to convey the message that "we can help you, there are very good techniques nowadays that can really help you, stop thinking that there is nothing you can do about it". This is from experts in the field that partake in TV programs or interviewed for news segments. They seem convinced that we have what we need to manage this condition. They are also the guys that have influence on funding and awareness.
On the one hand I'm happy to see T discussed on public TV/radio, but on the other hand I cringe about the message conveyed to the masses: they must think it's a mild condition that you can easily ignore with some fans running in the background or some meditation.

Even on the web, it's all about positive stories: we are encouraged to write them and to be inspired by them. Think positive!

The world plays pretend around this condition, to the detriment of patients who are themselves told to stop looking for a cure, stop looking on the internet, stop thinking about it. I know I've been told that. And if we patients lose the drive and will to seek change, then who's going to drive a resolution for us? Nobody has your best interest in mind other than yourself.

I will keep living my life the best I can do given my conditions, but I think playing pretend is counter productive to the positive change I'd like to see for this condition.

 

Remember that the façade that you see can be radically different from what people feel in private.

 

How can the guy have severe H and be at a crowded bar even with plugs ?

 

Just a note what you see from people at bars or event like this doesn't really reflect how they are doing. When I'm out at bars with my friend I'm like the funny guy everyone likes me and always making jokes etc even in class it's the same but deep inside I'm crippled. And if a stranger asks me if I'm depressed or what about something I'm not going to tell him yes. It's not because they look happy that they are.