Where were you a year ago?

@Mani What about the CBT? Did you already try that too in conjunction with graded exposure therapy?

 

Thanks Bloodmoon, your support and wisdom means a lot to me.

and lol, just now as I was reading this thread I had a huge jaw spasm that a year ago would’ve sent me crying in the bathtub out of fear for what it meant. Immediately I just picked up my book and read aloud. The fear is fading.

 

Me too! So well captured!!! Utter dysfunction calling for a complete reboot. And I love the positive sentiment. It’s true! I’m happier now than I’ve maybe ever been.

 

How did you know ive done cbt?

In the hyperacusis community there was this guy ronniespector. He had 24/7 burning ear pain and like all the symptoms you can imagine. I cant look it up but the guy was really truly suffering for sure. He was the reason i started reading schubiners book. Wait ive blocked the sub but i really wanna share his work https://www.reddit.com/u/RonnieSpector3/s/T5CklBsgRx

His posts and comments - if youre curious please check his comments too - share the story. I cant read it anymore as i have completely blocked the hyperacusis sub but ive read his work a ton and i think you should check it out. He was the guy that inspired hope from day 1. As far as im concerned he wasnt really part of the tms community but he did share schubiner videos and resources


He’d sit 10m away from a shower for 10 sec (with plugs and headphone) and then the next day 20 and then hed move a meter and so forth and so forth and i personally had an incredible lack of success with that method. Id feel terrible on day 3 because of other exposure and then lose all the ground i gained. Cbt in general made me feel like i was telling my brain there was something that needed to be fixed. You’ll probably say that im doing it wrong and i understand that you might be passionate about it. I can explain what i mean if you care but you didnt really ask for everything im saying rn lol

I have found that my brain will gradually make sound softer when it deems it as safe. I have obviously done baby stepping to get better but like music exposure and shower it just didnt work like that.

What i have done is for example in the beginning, id just sit in the living room with my folks until i started getting really uncomfortable or loud tinnitus spikes and then id either put plugs in or leave the situation.

A rigid schedule just wasnt really it for me. I dont know why but ive never been able to make sounds less loud by that form of exposure. I have worked better on vibes so far.

I dont wanna act like the ultimate truth because im still finding out what works for me.

 

I agree what yall are saying in the sense that we were probably all dysfunctional long before tms started. I think i do wish i wouldve gotten this as a 60 year old or suttin like that.

Like man and i know how to calm myself down better but the clock is fucking ticking. I’ve always felt like i have a love surplus to share with the world and i would really like to get going with trying to find the one. yeah yeah ‘dont put pressure on yourself’ I kknow i know. Its just a strong desire. I dream about my sister having kids and me being the nice uncle and loving them so sweet.

I actually turned 20 today which means im no longer a teen and am actually approaching unc status. The real gems will be taken by 25 so i best get to work.

I’m typing this with a grin on my face but im dead serious lol

 

Happy birthday Mani! And you’re so young. Pressure is a killer! Think about how much you’re going to be able to offer your future partner from going through this. I know it seems grim right now, but you’ll be a better more rounded individual when you come through the other side.

plenty of gems at any age, any gender, anywhere in the world at any time!

 

@Mani Happy Birthday!

Well, it might seem like it, but I'm not actually an 'evangelist' regarding taking baby steps, I just know it worked and is continuing to work for me with my brain, so when people are struggling imo it makes sense to try it. But if it hasn't worked for you, it hasn't worked for you.

The following seems very important to me...

What have you noticed makes your brain feel safe enough for it to do this? What circumstances, what actions etc? If you don't know atm, I'd suggest taking some gentle observations. Because whatever kind of thing is making it feel safe, you need to do more of it.

Ronnie Spector and the 'wall of sound'; I like the guy's sense of humour!

 

Happy Birthday, Mani!!! ❤️‼️

 

Just getting on with my life. Just absolutely paying zero attention to sounds. Obviously im not perfect but living at home with other people while having earplugs in obv. Id just do my own thing and let other people make the noise to which i dont respond.

When i make the noise myself or like plane exposure or whatever it somehow becomes the entire activity, even when im trying to distract myself with some other task.

Actually what constantly seems to happen:

I try some weird exposure thing. It doesnt lower tolerance but does leave me overstimulated. I get frustrated that it didnt work for the millionth time. I decide to stop doing that and to just get on with life. I notice that some sounds bother me less and then the cycle begins anew.

Most important is self compassion, safety, feeling emotions and just kind of getting back into it. You know how easy it is to have a sound in the background and grow fixated on it, like a lot of people do with tinnitus. Its a little dan buglio esque i just try to make friends with sounds. Its just vibes based, i cant explain it.

Before it got worse id be dancing in the shower to try to convey this safety but it just — maybe it did work slightly but it was just not the way i had to communicate with meself

When my progress really halts ill try something else again but for now im quite satisfied with progress.

 

Thank you all for the best wishes!!<3

 

Not 'when' but 'if'/'should' (sometime, never!) my progress halt... Words matter to the brain! They really do influence it. Great that you're satisfied with your progress.

 

Absolutely right!

 

You know, that’s something I sometimes forget — the depression part. I was really low when I was bedridden, but then my anger at the situation took over and, as you know, I started peeling carrots and never looked back. When I reply to people now, I sometimes forget to acknowledge that stage — unless they mention it. Anyway, what an achievement, pulling yourself out of that.

Bingo! That turning point — when you know it’s change or stay stuck — explains a lot. It’s why some people “get a wiggle on” quickly while others take longer. My rock bottom was being bedridden, but others’ might look very different. Everyone’s threshold is unique, but it's reaching your particular rock bottom that is the tipping point for a change in attitude.

I love that. I’m more than beginning to think we all need a mental “home” to return to. Yours is faith; mine’s become art. I can’t create the way I used to, but I love just appreciating it. My husband and I saw that the little old (15th century) church near a house we’re hoping to buy holds a quiet two‑hour contemplation session, open to everyone. We’ve decided we’ll go if we move — it feels like a lovely thing to do for the peace of it all, even though we don't anticipate a conversion!

This makes my heart sing. Your “building blocks” image nails it. I’ve started “pebble or marble counting”: I keep a glass jar and drop in a pebble every time I achieve something, however small. Raelan Agle talks about it in one of her videos — it keeps progress visible and tangible (her progress was to do with CFS/ME but can be applied to people in pain of course). I use more than the 10 marbles/pebbles she suggests; one can just adjust how you do it to whatever suits. I think we may have touched on this before, but I'm employing it a lot these days.

Time stamp: 5:04

That’s such a great sign. From your past experience of it too, meditation clearly works for you, but your brain fought it at first because keeping you restricted and therefore 'safe' was its priority.

Oh, it’s definitely answered it. You, Rabs, and Adam helped me realise people only really commit once they’ve hit their particular and unique rock bottom. Before that, advice tends to bounce off. All we can do is plant seeds — the rest happens when people establish for themselves that most other roads lead to a cul‑de‑sac (I say 'most' because, of course, some people find that, say, just meditation or practicing tai chi, or whatever, does the whole trick for them).

Exactly. Sarno emphasised journaling, but self‑soothing didn’t get the same spotlight. The tougher cases often had to learn daily living despite pain, and that side of things rarely got mentioned. That’s why “baby steps” are a hard sell — they require grit and patience above all.

Yes — that sums it up. It’s slow, messy, and frustrating, but it’s the way through.

I’ve noticed something else too. For me, “stepping away” from the forum wasn’t physical — it was mental. I stopped needing to ask questions and just replied to people instead, and that shift really cemented the mind‑body ideas in me.

I can see that same shift in you now. When you reply to people you’re writing like someone who’s internalised the work. It doesn’t mean we’ll never ask again, but we’re no longer, as you say, chasing a magic bullet. We’re just living the process. And that’s a huge step forward on this 'journey'.

 

I notice a lot of people entering the forum are lost, depressed and think life is now totally hopeless. It really is a fight to come back and a lot of things contribute to it. For me, reading the book, Feeling Good, by David Burns and doing the exercises he mentioned faithfully, helped me a lot. It was a good start. Also the forum kept me alive. The friendship and the hope.

Yes! You peeled carrots in bed! That left a huge impression on me. The last few months I’ve begun to make salads for me and my husband every night while sitting at the table. It’s taking back your life, even if you have to sit or lie down. It’s saying to yourself, “I’m still alive. I still have work to do. I still am useful.” And that sends a powerful message to yourself that you’re now on the road to get out of this. People who are down with TMS think they can’t get on with their lives. But you can. Just do what you can. Make a start. You also have to get over the fact that things aren’t ideal or how you used to live. You just have to look at what you can do now, not at what you’ve lost.

Yes! I agree. Art is transcendent. A nice home to have.

How exciting! I hope you get the house. And also nice to have such an old church nearby. A quiet contemplation session sounds wonderful. I bet you’ll enjoy it, and the old church as a place to ponder all things peaceful and beautiful.

Yes! And it’s what holds a lot of people back who need it more than anything. The longer you sit, the weaker you get, and pain increases due to stiffness. I got much worse and then my feeble random attempts at movement felt like failures. You really have to put yourself in the mindset of a professional athlete; they accept daily physical pain. Even welcome it. You have to become your own coach. And your “workouts” are baby steps. Not glorious by any means. But yes; they are absolutely a means to an end. And they significantly add up over time.

Thanks, @BloodMoon! Yep. Just living the process. And it’s hard, I’ll admit. You’re much farther along. And I’m honestly so glad you’ve stuck around on the forum, because without example like yours, people with tough complex TMS like mine wouldn’t have much hope. For some, they get out quicker than others. But some of us are slower. I don’t really care how long it takes me, at this point. I just care if I do my building blocks today. (Love your visual marble idea for counting up baby steps!)

 

Thanks. I think I'll just move into the church if we don't! lol

Amen to all of that!

Yes — and those Shaolin monks who can endure enormous pain inspired me too. They demonstrate that you can show your brain that you know that what you're doing is safe. (Not that I'm advocating that we teach our brain in such an extreme way, of course!)

I play with it all the time! Sometimes I collect them in the jar for a whole week, and seeing them pile up really lifts the spirits — a cheerful reminder of all those little wins adding up over time.