NHS £750 Million for Research

Discussion in 'Awareness & Fundraising' started by jay777, Apr 21, 2018.

    1. ABakos
      Wishful

      ABakos Member Benefactor

      Tinnitus Since:
      04/2017
      Cause of Tinnitus:
      ? neck injury/unknown
      I feel no shame, but I am a bit like jazzer: a pain in the ass to everyone around me.
       
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    2. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      I can understand that Greg, but then is it no surprise that tinnitus is not taken seriously? Whom in the real world knows about it who isn’t on this forum. It’s like the secret agent of problems to have. I suppose that’s the real reason why no one cares.

      I wouldn’t say I broadcast it, but I’ve never downplayed it either. People know the effect it has had on me when I was at my worst because it couldn’t be hidden. I had too much time off work and excuses wouldn’t cut it. At the same time I’ve never felt shame about things that are out of my control - and I think it does the opposite - I think it shows power rather than weakness that you can show the world your true-self. I’m a pretty confident person in the real world so maybe that helps? I honestly believe that people will only see you as damaged goods if you see yourself in that way. If you can still perform your job then it should make no difference; they’re the ones that need educating if it’s true that they think in this way. I have educated my friends and family on the dangers of noise and what it can do. Now it’s up to them to either take my advice, or ignore it, but at least they are now aware of the hidden danger.

      I suppose it’s the same as the depression debate. Nobody tells anyone about that either because of the stigma, but for the past few years, our government (UK) has spent millions trying to break it. We have TV adverts, radio adverts, posters, and multiple celebrities queuing up to talk about it. Maybe one day tinnitus sufferers will finally open up, en-mass, and spill the beans to the unenlightened. I hope so.

      Never feel shame.
       
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    3. Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      Difficult decision for me to make - professionally - where and when to mention it on gigs.
      I rely on the fact that they know I am an intuitive jazzer, who knows how to make a musical contribution, to outweigh any nuisance value.
      If they can take it, fair enough; if not, I’ll play with others capable of considering what I feeel.
       
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    4. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      Jazzer, I think a lot of musicians know about this condition, already, because it affects so many of us. It’s a trade off. Many of the musicians I’ve spoken, and jammed with, already had the condition.

      I get that it can be difficult to bring awareness without shooting your self in the foot sometimes, but my experience has always been good when I speak with others. I’ve received loads of respect, and support in some cases, when I tell them how bad it can be. No one has ever been derogatory. I understand that this is just my experience and maybe others have not been so lucky. But if we hide it then how will the world ever learn/know about it?

      To feel shame is almost to feel guilt; like we have done something wrong and are embarrassed about it because it is frowned upon or vulgar in some way. Far from it I’d say! the world has wronged us by being too loud and by hiding T & H from too many people ;) Be bold, and make a difference if you can, but that’s just my opinion. We don’t all have to.
       
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    5. Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      Believe me Ed - I never hide it.

      Sometimes I give ‘em both barrels!
       
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    6. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      And so you shouldn’t Dave! What’s there to be ashamed about? It’s an affliction, not a dirty secret :LOL:
       
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    7. Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      Great post Ed - with you all the way.

      I said to one successful bandleader, after the first set of a three hour gig (yes I was well plugged up)
      “Either the volume comes down right now,
      or I walk out of here, and you don’t ever phone me again!”
      We got it right!
      B1F4A3FF-C33B-4C7F-B0CA-95F58A7FA3C2.jpeg
       
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    8. TheDanishGirl
      Sad

      TheDanishGirl Member Benefactor Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      05/2017 (H since 06/2017)
      Cause of Tinnitus:
      long term noise exposure (headphones), maybe some stress.
      Exactly my problem! I want to donate to research, I REALLY DO! BUT I don't know where to put my money, because I want to make sure it goes to actual research and not CBT, TRT ect, so where should I put my money?? the possibilities are many, and I feel confused.

      And yes, I have shared my struggle with tinnitus and hyperacusis on FB, and warned others.....I have shared articles and joined the Thunderclap during Tinnitus Week. Unfortunately people don't seem to have an interest in it.....I did not get one like on my shared articles, NOT A SINGLE ONE.....Like you say: people just don't care unless they have tinnitus themselves :(
       
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    9. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      You got it Dave. Own your own existence.
       
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    10. Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      @Ed209
      Here’s a clip taken from a ‘telephone - ad hock’ session.
      I appear to be giving it some ‘welly.’
      (Don’t sit in the front row!)

       
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    11. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      It certainly doesn't help. I'm not claiming it's a good thing: I'm stuck between a rock and a hard place. That's one of the aspects of T that makes it so difficult to manage: you want to be able to talk about it openly (for all the good reasons you mention), but you want to be careful about the consequences from it.

      I think you have more faith in humanity than I do, especially when it comes to work. I'm certainly more cynical.

      Agreed, but the thing is that it does affect my performance in pretty bad ways. I'm hoping that time will help change that, and I don't want to be written off permanently if it were to be a temporary situation.

      I do think it is very similar indeed to the depression debate. And I think it's easier for the people who don't have to worry too much about work to talk about it: generally, if you're a celebrity, you can get a decent income from just being visible and known (for some of them, that's all there is to their celebrity status actually). In some twisted ways, drama even help the celebrity status.

      For the rest of the world who has to go to a job interview, being the one with depression in the pool of a few qualified candidates is probably not going to help your case. I can dislike this on many grounds, but it is what it is, and I still have to live with it.

      I'm not ashamed of my T at all.
       
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    12. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      Great performance Dave.
       
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    13. Autumnly
      Wishful

      Autumnly Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Location:
      Germany
      Tinnitus Since:
      July/August 2013
      Cause of Tinnitus:
      Noise induced
      I have the exact same problem, so I'm donating here and there just hoping that it might make a difference...

      But still great that you shared those articles! Maybe someone will develop tinnitus and think back to one of your posts. Yeah, I told friends when I developed tinnitus and how severe it is but the reactions I got were very hurtful. I've heard everything from "Oh my god, I'd go crazy! / I'd kill myself!" to "How the hell did you do that? (meaning what did I do to develop it, I think some people really don't know that they're just one more concert/night out away from developing tinnitus themselves). Also told friends to wear earplugs at concerts and they simply said "I won't develop tinnitus / I'm not like you" and the fact that they haven't gotten tinnitus just proves to them that I must have done something extraordinary to develop it or that it's rather a mental health issue. :rolleyes:

      Agree with you, I'd like to have more faith in humanity but my own experiences weren't quite what I had hoped for. Today was the first time I met a compassionate doctor who was understanding of my struggle with tinnitus and hyperacusis (I had t for over four years), it was a dentist who has mild hyperacusis himself. But friends, doctors, other people at college... they just looked at me like I'm contagious and crazy when I mentioned I had chronic tinnitus.
       
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    14. ABakos
      Wishful

      ABakos Member Benefactor

      Tinnitus Since:
      04/2017
      Cause of Tinnitus:
      ? neck injury/unknown
      Wow, amazing musician you are!
       
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    15. Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      @ABakos - thank you so much.
      I’ll just mention, after a dreadfully lonely infancy/childhood I was so troubled that I couldn’t retain much learning for exams etc...
      I had been academically crippled by isolation and depression.
      I was desperately trying to hold myself together, to survive the moment I was living in.
      Then one day the Salvation Army loaned me a cornet.....and guess what.....I could play anything that came into my head.
      The other kids said “but how do you know what to do? How do you know which ‘buttons’ to press?”
      I just did somehow know what to do.
      From a position of feeling totally useless, I was forced to admit that I could actually
      Do Something. “WOW!”
      I’ve been doing it ever since.
      I’m a bit self conscious about putting clips up here.
      It’s a bit like “blowing your own trombone!”
      Dave xx
       
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    16. Zug
      Woot

      Zug Member Benefactor

      I was a University Professor for about 10 years. Lost the count of how many people who didn't fit in went on to do amazing things in their adult life.

      Unfortunately, the educational system doesn't know what to do with artists, entrepreneurs and original thinkers.
       
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    17. Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      Hey Folks - @Zug s a regular ‘boffin!’
      University professor, and all that.
      Wow - he’s gotta be the real deal.

      How do you manage to put up with us lot?

      What was your subject, by the way Zug?
       
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    18. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      Zug was a professor in how to be a legend (y)
       
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    19. Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      A Legend in his own Lunchtime. x
       
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    20. Zug
      Woot

      Zug Member Benefactor

      Business. Not THAT much fun :rolleyes:
       
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    21. Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      Must have helped you earn a crust ??
       
    22. ABakos
      Wishful

      ABakos Member Benefactor

      Tinnitus Since:
      04/2017
      Cause of Tinnitus:
      ? neck injury/unknown
      Aww, that is sad. You have done so well for yourself!
      Go ahead, we love the clips. I have always loved music, but since having T I love jazz so much more. Somehow the brass instruments blend with my T, and the tempo is so relaxing.
      Almost became a musician myself.....I am very much an original thinker, just became a nurse for the security and steady income, I often tell my hairdresser that I am "only faking it" as a nurse. You know, we often tell our hairdressers our true feelings.
       
    23. chamferman
      Musical

      chamferman Member Benefactor

      Location:
      England
      Tinnitus Since:
      06/ 2013
      What annoys me about the NHS treatment I received is the hearing aid with the inbuilt hearing aid is not fit for purpose.
      The hearing aid works fine but the masking device is useless and offers no relief. I have been back several times to have it reprogrammed and its just not capable of reproducing my Tinnitus. My T isn't a complicated sound, the sound of running water masks it great.

      I could buy a £10 MP3 player and get better masking relief from that. So for me what really disappointing about the NHS is, the only little relief that I could get from my Tinnitus they cannot supply that!

      I have mentioned several times at appointments that I need a hearing device that is capable of playing MP3s and the reply has been that they do not issue that type.

      So maybe the money should go to research as they clearly do not understand the condition at the moment or treat it with the seriousness it deserves.

      Simon
       
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    24. AUTHOR
      AUTHOR
      jay777

      jay777 Member

      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      benzo/ headphones
      yes an mp3 would be a much better option and save the NHS millions
       
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    25. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      I think we need to be grateful for whatever we can get. I wasn’t offered anything at all, but I wouldn’t expect them to give me top quality hearing aids either. You can always buy the hearing aids you want if you want to go down that route. The NHS at the moment is extremely fragile as highlighted by the BBC documentary series ‘hospital’. People are having life changing surgeries cancelled, multiple times, to the absolute annoyance of the consultants whose hands are tied. They are powerless to change the situation and it’s not their fault.

      I have many students who are NHS consultants and they frequently tell me how dire the situation is. I’ve been told that each year they break their own records on admissions and waiting times. In January I had to rearrange quite a few appointments because they all had an emergency mandate to go into the hospital and help clear the backlog. Apparently our local hospital was one of the only ones in the area that hadn’t closed it’s doors. The whole system is at breaking point and it’s only going to get worse.
       
    26. AUTHOR
      AUTHOR
      jay777

      jay777 Member

      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      benzo/ headphones
      We are paying for NHS, can we not have a say on how the money is spent?
       
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    27. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      Yea of course, but I think a lot of people lack appreciation for what we have access to even though it’s under huge financial restrictions. Don’t forget that everyone has free access to the NHS whether one pays into it or not. The burden it now faces is far greater than it can financially afford. Personally, I’m all for raising the national insurance to meet the demand (to make the service much better), or at least, the government should actually try and meet the demand in the current budget. Something has to give because it’s often taken for granted in my opinion.
       
    28. chamferman
      Musical

      chamferman Member Benefactor

      Location:
      England
      Tinnitus Since:
      06/ 2013
      I can buy my own hearing aid - No shit sherlock
       
    29. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      Then why are you annoyed? Buy what you require.
       
    30. glynis
      Feminine

      glynis Member Benefactor Ambassador Hall of Fame

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      @chamferman,
      I have NHS hearing aids and so greatful for them.
      I had a masker setting added to play white noise but the setting doesn't have a option to set the volume on them but I do have separate White noise generators .
      Love glynis
       
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