Log in
British Tinnitus Association
2,076 members1,523 posts

Sad

Hi all. Sorry not been on for a while - resorted to my ' boom ' ( been busy applying for jobs I will struggle to do but will ease the scarey financial situation tinnitus has brought me to / avoid / ignore ) to cope with increasingly difficult tinnitus and head pains . The relaxation and actually having a nice ish home for the first time in my life don't make any differencerrors. Even gardening this morning has ' hurt ' . Wondering how people management when others tell them to be positive, even happy to have tinnitus. Not being able to go to Forest after 41 years is still upsetting me and friends are running out of things they are willing / able to that don't include noise - a good friend has chosen to do something on her birthday today which I can't go to and though whilst I do get it , it seems my life is going to get smaller and smaller and less and less sociable. But I am told be Happy it's only a noise !

25 Replies
oldestnewest

Hi Lindsay,

I feel sad reading your post, I'm so sorry you suffer so much with T, I have my moments but nothing as your self. I wish I could help but I can't even help my self.

Do you live near Southampton, I'm going along to the info on T in a few weeks time, might learn something.

Love Gary x

2 likes
Reply

That is so so kind of you Gary. I am just being given mardy I guess and struggling with coming to terms with years of working with people to help them ( which I have loved ) and always been there for my friends, it seems no one wants to know or help someone with tinnitus - apart from this Forum. I used to be jolly and funny and full of life and Forest songs 😂

Reply

Tinnitus is a very lonely thing, others can't see it, hear it or feel it, I'm afraid we are by our selves.

X

Reply

Hi gary, that is so true which is why these forums are a life saver as at least everyone knows what your going through and can sympathise.

Was hoping to go to southampton info day as live in portsmouth but it falls on my weekend to work so sadly cannot make it. I did go to the one in london last year and it was very good and the one thing i got out of it was to feel more positive about life in general. Yes i hate this thing sometimes and think 'why me' etc but most days i can carry on as normal, well as normal as possible and think to hell with it. And if im having a bad day then i just think that tomorrow maybe better so today is just a blip. Ive given up trying to work out what makes it worse or not as what may have triggerred a spike one day may not on another so it seems pointless in analysing it. I have been using my hearing aide with masker a lot more just lately and have to say its hit and miss but as long as i put it in as soon as i wake up, it has been helping.

Will be interesting to here your thoughts on the info day

lesley

2 likes
Reply

Hi Lindsay. I'm new to tinnitus and I'm so sorry to hear that you're struggling at the moment. I've been told to hold on to the positive things that are in your life (although at times this can be difficult too especially on a bad day).

Try to keep doing the things you enjoy and give you pleasure. Keep practising the relaxation and meditation (easily said and done I know). Some days I have to force myself.

It's been suggested to me to try sound therapy. I don't really know your situation. I guess lots of people will have suggested numerous things to try.

This forum is wonderful and you have people here who understand the situation you are in. Have you looked to see if there are any support groups near you? I live in N Wales and unfortunately there aren't any near me.

Every day is a new day (easily said than done I know).

All the very best with the job hunting.

Take care and look after you

Best wishes

Kate

3 likes
Reply

Hi Kate and berry76 , and Gary . How kind of you. I am sorry kate in particular being new to tinnitus , but everyone had to read my oost , I really am and I don't think it was at all fair of me . I am , I gues , not managing well with no longer being the superwoman I was - helping people all the time , being the life and soul of the party. I do agree that the emotional / psychological are so connected with tinnitus - proverbial viscious circle. I really do value this forum . I am not always so mardy , don't want people to think that. Yesterday I asked myself what i would say if i were helping one of the people I worked with .I ended up emailing a close friend who has been the secretary of the Forest Supporters club for years ( she is 76 and such a good role model ) . I was involved for several years as well. I was , fro the first time , honest about how upset i was about not being able to go , and asked if she thought any areas of the ground might be quieter ( crowds of 28,000 so a challenge ) or any othe rthing she could think of . This may sound trivial to others but to me its having a huge impact on my mood. I also sent off my application for an Engagement and Participation Officer ( for our charity , working with health services and CCG's) . They changed the hours and location to fit me / my tinnitus so I feel I must give it a try. i am also going to see the Academy team on Saturday lunchtime with my 82 year old father. SO HUGE APOLOGIES TO EVERYONE AND EVEN BIGGER THANKS

3 likes
Reply

There really is no need to apologise. I've not yet had a diagnosis yet ... have an ENT appt on Wed. Feels like I'm in limbo at the moment. I seem to be at my worst in the am. Fluroxetine and Zopiclone are helping at the moment.

I just try and take one day at a time and treat every day as a new day because with this condition for me at the moment no two days are the same.

Take care

Kate

2 likes
Reply

The trouble is that in our brains the emotional side is very closely linked with the auditory part and the lower our spirits get, the louder the tinnitus seems to be, and the less resilient we are.

Sometimes I take Kalms or 5HTR (Tryptophan) to boost the psychological side and these do help - also the maskers in my hearing aids. Be strong ... we're all in this together! At least the T is a diversion from a seriously ill life partner. How sick is that?

2 likes
Reply

Feeling your pain re missing out on the footy. I went to my first game of the season yesterday and I'm paying the price today. I'm even considering stopping going, to avoid the noise, but my kids (9 & 6) would be devastated at not being able to go. Hugely upsetting, as most matters around this awful condition are.

The recent BTA review of research is the usual mishmash of 'ooh, this might work, but it needs further investigation'. JFDI.

1 like
Reply

I guess it must be the same feeling for a footballer who gets a serious injury early on in his careers , or musicians with tinnitus . If I find a way round it , I'll let you know ! I will probably start boring people about the Academy lads again , that said I did see some of our current first team as youngster. I agree re Quiet and its no secret as I have said it a few times to BTA ( and was saying the my 'private , good but of course costs money ) counsellor yesterday that the research is very much the same as has been going on for ever more and somethings are so unmeasearable , that I would like some of the research money to be spent of support that DIRECTLY AND IMMEDIATELY helps us e.g 1-2-1 one support . But research is a big industry I guess. I don't doubt the intentions , but feel we need help now .Take care

1 like
Reply

We are looking at more one-to-one support via a befriending service, but it's taking longer than we would like. And please look out for a survey with the next issue of our magazine (and publicised wherever we can) so that you can have your say about the BTA, our services and what you would like to see - we really do want your feedback!

(Sorry for going off at a bit of a tangent, and I hope you're feeling a bit better Lindsay for sharing with the great people here)

Reply

Thanks Nic. I do think not just this Forum but the BTA is great . I still stand by believing g in the need for professional counselling and if NHS won't provide then charities can if of course agreed by members etc . Sunday was a particularly low day because of Forest ( for oncertain not brought on by abject defending - though there was a bit of that !) and I guess I had hoped moving would make things better ( naive I know ). I have scared myself working out how much I am having good to pay for counselling and still struggling to cope with the pain. However like a lot of us we od on. Am currently reading a survey of PPGs in preparation for meeting tomorrow about new job . Got excited as it's all about working with people to come together and feed into CCGs including travellers, refugees. I need to prove my tinnitus has not and will not ruin my life . Hope AGM preparation is going great well 😊

1 like
Reply

I hope that one of the projects that Derek Hoare at NIHR Nottingham has been leading on will improve things on the counselling front, so that people have access not only to audiology support but psychological support! Would it be mean to say the results from that Nottingham team are better than Forest's? :D :D

You still have a lot of stress going on - the stress of moving house doesn't end when you get the keys, and with job hunting as well, no wonder your tinnitus is making itself felt.

Hope the meeting went well!

1 like
Reply

Thanks . I think because my life has vbeen all stress all the time I don't acknowledge stress , if that makes sense, because I have always had to cope with it ( and managed until tinnitus came along ). My neighbours are nice but they are always in the back garden ( fine of course) and as yet I haven't got used to it and am very jumpy .

I got the job - and it will be interesting as I cover / funded by a contract with Mid Notts CCG - which includes Kings Mill Hospital which is where my audiologist is.

The Academy are our under 18s and its renowned for producing some good players. I also thought I would contact Forest ( I know some people from my time on the supports club committee) and ask about going into the glass enclosed disabled section. I will NOT let tinnitus ruin my life .

Hope all is well with you

2 likes
Reply

Perhaps the tinnitus was telling you to look after yourself and that the level of stress was unsustainable? I'm sure you'll do fine and overcome the tinnitus!

Congratulations on the new job!

1 like
Reply

As the editor of the BTA Annual Research Review and Quiet, yes, it does feel like that sometimes - well, quite lot of the time, to be honest. The good news is that more does appear promising, rather than a dead end. And the truth is, research is expensive, takes time and money, and both are in short supply. We keep driving and striving for progress though and hopefully there will be the breakthrough we're waiting for!

1 like
Reply

Hello Lindsay.

Sending you a cyber hug. We have all been there. I have good days and bad days. It is hard being positive every day as T is so draining and exhausting. It never relents so it is natural that it will get on top of you at times. I hope that you find something to take your mind of it and to give you some peace.

Kind regards

Ade

2 likes
Reply

Thanks Ade - I ended up watching 60 Days in Gaol ( very scary programme about ' volunteers' being incarcerated in USA !!! Took my 80 year old Mum to garden centre yesterday for plants and coffee and cake and today sort of working from home / sort of not ! We are all different buy oh it so helps that others understand us. Thanks again

1 like
Reply

Gosh Lindsey Im so sorry you are really going through what sounds like a very difficult time. Like others on this site i truly hope you come out of it soon. It must be hard to have to give up what you enjoy doing. I dont know if i could be as strong as you if that happened to me. Have you been to see your GP to see if there's anything they can give you to help you through it.? As maybe thats what you need? Obviously the person who told you 'be happy its only a noise' doesnt suffer with tinnitus otherwise they'd never have said it. I really hope you things improve for you soon.

Love

Lesley x

1 like
Reply

Thanks Lesley for your kind words . Unfortunately it was an NHS Hearing therapist who said its just a noise and told me I knew what I should do ( i.e my fault for letting in get to me !) and others whose tinnitus is not as loud or troublesome. But heh ho ! I Will as Gloria Gaynor sang , Survive . Thanks x

Reply

Hope you are feeling better today Lindsay. I was wondering how you were - although I haven't been on the forum for a few days as have a few things going on at home. I wish I could say something positive to make you better, but I can't add to anything the other regulars have said. We are in it together on here to offer support but, unfortunately, we are alone in our world of T. It is a horrible condition and I agree with Ruud - so much research all over the world, and all we get are diagrams of how T affects our brain! I think the answer will come from the USA where apparently so many of the war veterans are suffering.

If my tinnitus were to return to its appallingly painful beginning, I would have no hesitation in returning to the anti anxiety medication I was put on. I had so much pain in my head that I was unable even to wash my hair in the shower for many months! The pain spread down to my legs too. And like you, having tinnitus has sapped the normally extrovert me to being a person who prefers the quiet of my own four walls and garden. But, I am content enough like that and have to say that my garden is much prettier.

Love and best wishes, Angela xx

2 likes
Reply

That made me smile , to think your garden is benefiting, thanks Angela . Hopevthe family things are ok😊I too am actually quite enjoying being on my own some of the moment - never ' normal ' last night I was doing colouring listening to The Levellers looking with my life sized cardboard cutout of Forest hero Stuart Pearce leant against my study / second / all sorts room ! I still haven't plucked up the courage to try nortripyline so I do need to look at this. Have a good afternoon x

1 like
Reply

Hi Lindsay, we all have such different lifestyles - and yet are all in it together with tinnitus. I do wish I could meet up with friends as I used to - I just cannot tolerate all the chatter and noise nowadays - and unfortunately my friends do not/cannot understand the problem that I have which means that it seems to them that I don't want to meet up! I have just given up and am content with my quieter life - I was always the pragmatist My good wishes to you and I hope the new job provides all that you need. Please give the meds a go ........ love and best wishes, Angela xx ps I won't be on the forum as much during the next 10 days or so

Reply

Have a lovely time with your daughter and her partner. Though you won't be on the forum I will be thinking of you - and your wise and caring thoughts and wishes to others despite your own ' challenges'. ( Smile face if I knew how to do one!)

1 like
Reply

Thank you Lindsay. This forum got me through those first horrid months of tinnitus so I join in when I can to support others. There are some lovely folk on here, of which I know you are one of them. Love Angela xx

Reply

You may also like...