For Buddie 123

[Curlew]

Hi B,

I read that you have had T since your early 20s and are now a similar age to me. It was very impressive to hear how you have coped and lived a full and normal life.

I just felt I had to say well done. That is genuinely what you call inspirational 😊

[Ingrid-p]

Hi, believe me it hasn’t always been easy. When I first got it I was in a very bad place, but gradually things improved until I became pregnant and it was literally hell. I was prescribed sleeping tablets as I couldn’t sleep and I was terrified they would harm my baby. She was born on her due date and again t faded until I got pregnant again in 1995. Since then I’ve had 3 bad spells (now being one of them). I know that gradually t recedes. It never goes but the brain just learns not to acknowledge it even though it’s loud. I wear 2 hearing aids which help massively and they have built in maskers which I don’t use all the time.

I would love it to go and just hear silence, but it’s not going to go so just have to carry on. When mine is bad I’m just this little person at the end of the noise, but gradually I become the big person and the t is the little noise. I think it’s slowly happening as I feel more like me every day 😁

Take care xx

[AdamfromAus in reply to Ingrid-p]

It is good to hear from people who have had bad experiences and come out the other side. It sounds very similar to me, apart from the pregnant part. I go through phases (like now) where it really intrudes on my life than for some reason even though it always there I am able to live with it without intrusion on my everyday life. I feel the less we give it attention or show anxiety the better off we all are.

[Knoll80 in reply to AdamfromAus]

This T life is so tough. That you have managed to live a normal life is testament to the huge strength of mind you must have. I salute you my man.

[Knoll80 in reply to Ingrid-p]

Ingrid I know it’s a pipe dream but I can honestly say if there was a line for a cure I would suffer for another year just to watch you being given it. The joy of seeing you recapture silence replaying in my mind would get me through it.x

[Knoll80]

She’s remarkable. To get this at 23 and to not only go on and live a happy productive life but create two other lives while suffering the most mentally torturous affliction on the planet takes incredible resilience and frankly heroism. I’m on the canvas with this but she makes me want to fight.

[Ingrid-p in reply to Knoll80]

Hi I've just written a long reply to you, but lost it somewhere 😠 I'm not remarkable, but life really is worth living. In a while from now you'll be feeling so much more able to cope. It's bloody horrible, but it will get easier. I'll send you a private message tomorrow. Yet again hubby is moaning that I'm on the phone xx