Where were you a year ago?

[Mani]

@Rabscuttle, I love this!!! it’s so weird how we keep finding things at the same time. I’ve been praising my brain with little routines. For example, I try to unload the dishwasher and reload it every day. I have a chair nearby in case I get too tired. I don’t push myself too hard

Its soooo weird. I feel so handicapped but this makes me realize how well most of my body works still.

I cant load a dishwasher for completely different reasons, but theres a load of things that i can do.

Sometimes i see people talking about music and think: ‘man music would improve my life tenfold’ and its true, I love music and itd be amazing to listen. However, I dont have to fear every step i take. I dont have constant stomach problems. I can type on this forum without being bothered by the screen lights or by my wrists or fingers.

I’m just saying we tend to get stuck in the things we cant do when theres still a ton of things we can somewhat do.


Sound feels like the entire world but theres still so much that I CAN do. Crazy. Perspective

 

[Diana-M]

I’m just saying we tend to get stuck in the things we cant do when theres still a ton of things we can somewhat do.
Sound feels like the entire world but theres still so much that I CAN do.

Yes!!! I can listen to music. But I can’t stand up. lol it’s SO easy to be consumed with what we’ve lost. It’s infuriating, actually. We need to appreciate what we still have and focus on that. Right? Until we regain everything again.

 

[Diana-M]

Mani, can you keep gradually exposing yourself to sound and gain music back?

 

[Mani]

Mani, can you keep gradually exposing yourself to sound and gain music back?

Its absolutely possible; it does not at all feel like it lol. Theoretically, believing in the tms work, i would be able to get everything back. Theres nothing physically wrong with me; I dont even have hearing loss lol. Well — I have single sided deafness but that is actually a godsend with the symptoms i have LMAO.

I just absolutely cant force it. For me, like the gradual exposure thing doesnt really work. directly. In the same way that you pushing yourself for the dishwasher doesnt work. It feels like im attacking myself when i turn on the speaker at just minimum volume. My tinnitus just spiked instantly when i tried to listen to some digital sounds. I really dont understand whats so special about digital sounds that makes it so earrapey to me. Anyway, it works way better to try to return to life and let sounds go. It does take some bravery and im still a scared little duck but ive actually been doing quite well. Like really noticable improvements which still feels totally surreal.

Have you had any new breakthroughs

 

[Rabscuttle]

@Rabscuttle, I love this!!! it’s so weird how we keep finding things at the same time. I’ve been praising my brain with little routines. For example, I try to unload the dishwasher and reload it every day. I have a chair nearby in case I get too tired. I don’t push myself too hard. Every day, a I do just a little bit more, But since I don’t drive myself so hard mentally like i used to, I don’t dread doing things as much. I’m not experiencing self abuse while I’m trying to do my activity. I’m just gentle. I say happy things to myself while I’m doing it. Kind of like baby talk in my head. Cheering myself on. I never point out to myself that I’m ripped off or disappointed I have TMS. I leave that out of my thinking. It used to be all I thought about.

I also do some daily exercises, and sometimes I will still get a lot of pain during the night. And then I know that my brain is just worried that maybe I’m pushing myself too far. (Its safety zone currently is at zero activity. I’m trying to teach it that I can do much more than that— But not too fast or I’ll have rebellion on my hands!) Anyway, at night if I get in pain, I’ll just use the same baby talking and I’ll say, “ It’s OK doing dishes is not hard. It’s not dangerous. I can do this; look it’s not hurting me at all!” Kind of like I’m reasoning with a five-year-old, which I am. And usually the pain subsides after I do the little pep talk.

I know a lot of other people have taught us this, but for some reason, it hasn’t really stuck for me until now. All of this takes time. You’re wrestling with yourself.

Good for you!!! It’s such a thrill, watching your progress!!!

Yes it makes me happy that we are both on a shared upward trajectory. Feeling hopeful and seeing others with hope is good medicine. Yeah for big occasions-returning to work, playing sports again, resuming exercise, socializing I would praise myself in those moments. But the day to day slog I would forget. But I think it really needs to be a constant or near constant thing. At least that’s what I’m beginning to understand these past few weeks. The brain wants to be our friends it wants love and praise. It wants me to be that comforting older sibling I wish I had, or the stable emotionally regulated parent I longed for. Poor little guy, I treated you so poorly for so long. That’s what I like about the second quote in my signature, for so long I treated my brain like a rival, it’s time to be cherished partners!

 

[Rabscuttle]

Its absolutely possible; it does not at all feel like it lol. Theoretically, believing in the tms work, i would be able to get everything back. Theres nothing physically wrong with me; I dont even have hearing loss lol. Well — I have single sided deafness but that is actually a godsend with the symptoms i have LMAO.

I just absolutely cant force it. For me, like the gradual exposure thing doesnt really work. directly. In the same way that you pushing yourself for the dishwasher doesnt work. It feels like im attacking myself when i turn on the speaker at just minimum volume. My tinnitus just spiked instantly when i tried to listen to some digital sounds. I really dont understand whats so special about digital sounds that makes it so earrapey to me. Anyway, it works way better to try to return to life and let sounds go. It does take some bravery and im still a scared little duck but ive actually been doing quite well. Like really noticable improvements which still feels totally surreal.

Have you had any new breakthroughs

If it makes you feel better I’ve seen progress by focusing on reducing stress and modifying thought patterns while still unfortunately focusing entirely too much on the physical. Granted I was still speaking during that time but I wasn’t approaching it from the right perspective, there was a lot of fear and doubt and all that good stuff. Lowering the nervous system threshold (primarily by meditation and the changes it has offered) has reduced my symptoms and subsequently given me less pain and more hope and belief. Which has then allowed me to focus less on the physical.

I guess my point is that even if you don’t feel confident to challenge your symptoms in a way that is eventually going to be necassary, you can still find other success which will make that challenge easier down the road.

 

[Diana-M]

Anyway, it works way better to try to return to life and let sounds go. It does take some bravery and im still a scared little duck but ive actually been doing quite well. Like really noticable improvements which still feels totally surreal.

Mani, that’s great! I’m glad you’ve found a way to get some noticeable improvements. It proves that it does work. That should give the little duck some hope! I relate to your struggles. I feel like we both get a success then we scurry back into our hole, like we don’t deserve it. Then we try again after a while. It’s almost like our biggest hurdle is loving ourselves, not the actual TMS.

 

[Diana-M]

The brain wants to be our friends it wants love and praise. It wants me to be that comforting older sibling I wish I had, or the stable emotionally regulated parent I longed for.

Such great insight! What a journey. I’m just so excited watching this and being part of your journey. You have been so consistently brave, and I think it’s paying off! And you also learned all the condiments that need to be served with the bravery.

 

[Diana-M]

Have you had any new breakthroughs

My biggest breakthrough has been the noticeable lowering of my symptoms through meditation. Like @Rabscuttle, meditation is turning off the fire alarms for me. My body is calming down overall. But it’s still squirrelly and suspicious. It’s on the lookout for trouble, and it tries to push me back into a corner. But I’m being consistent with the gentle exposure. Just day after day. My hope is very much alive. Because if the electrical buzzing I had for two years can go away. What else can?!

 

[BloodMoon]

Mani, can you keep gradually exposing yourself to sound and gain music back?

@Mani Further to what Diana says above... I expect you'll have probably tried it, but have you deliberately thought about and 'heard' (without actually listening to it or singing it or humming it or whistling it) a song or tune in your head? I was wondering if that might work like mental visualization does for athletes when they are preparing and practicing for their event. I was thinking it could be done in baby steps, with just a couple of bars (or less) of the tune or song... Or would there be a danger of suffering 'ear worm' that you might find annoying? Perhaps imagining sounds internally could rewire, and baby steps could minimise any possible overload and gradually and gently launch you back into the world of sound. Also, again I realise that you are likely to have tried it, but what about CBT?... I understand that it's usually paired with what Diana suggests.

 

[BloodMoon]

I’m trying to teach it that I can do much more than that— But not too fast or I’ll have rebellion on my hands!) Anyway, at night if I get in pain, I’ll just use the same baby talking and I’ll say, “ It’s OK doing dishes/exercises is not hard. It’s not dangerous. I can do this; look it’s not hurting me at all!” Kind of like I’m reasoning with a five-year-old, which I am. And usually the pain subsides after I do the little pep talk.

I know a lot of other people have taught us this, but for some reason, it hasn’t really stuck for me until now. All of this takes time. You’re wrestling with yourself.

Looking back, is there anything that the likes of me - a proponent of baby steps and of gently coaxing one's brain, just as you describe - could have said to help you (that is, your TMSing brain) to have been more open to actually doing this much earlier?

I have tried telling people my own story of how I needed to do this to recover from being bed ridden and housebound and therefore it's more than likely to help them, but it just doesn't cut it with them... "Baby steps?!! You've got to be kidding! I need and want to be better by yesterday... next week at the latest... not in a year or whatever's time! And, anyway, I don't believe that could ever work!" is essentially what they are thinking.

As you know, I began to take baby steps at some point after I'd hit rock bottom and was confined to my 'sick' bed, so it was baby steps or nothing for me; I needed no convincing of that... I either took my first baby step or just allowed myself to rot there, waiting to die from a DVT or some other serious medical complaint due to the inactivity... But so many TMSers aren't exactly at true rock bottom like I was.

It's frustrating and I'm at a loss as to how to get through to people and tbh a little tired and fed up with having the advice ignored or outright rejected. (Not that I'm saying you personally did either of those things, but as you mention... it was a question of it sticking with you before you acted)

You've said you don't know why it didn't stick earlier, but was there anything that finally clinched it for you?

I suspect you're going to say that the time just has to be right for the individual, but I just thought I'd ask because sometimes just saying the 'right' thing, putting it in the 'right' way, can make all the difference with regard to other matters, so I think why not this?

Maybe the answer is that I should suggest that people take a baby step towards taking baby steps, to get them used to the idea?! lol

 

[Diana-M]

@BloodMoon,
I think everything you said about baby steps made sense and it inspired me because you could prove it worked out in your own life. I think it was a good year or more before I was able to climb out of my severe depression. I just literally couldn’t make myself do anything. It all felt pointless.

I think you’re onto something with the rock bottom. There does come a point where you stop wallowing in denial and self-pity and just say to yourself, “if I don’t try harder, I’m going to die like this.” That happened to me. Adding more faith in God, coincided with this. And it gave me an added source of strength to lean on.

I’m STILL resistant to the pain that even baby steps cause. The baby steps are getting easier. But some days, they’re hard again. The progress feels so small sometimes, it can feel pointless. But I also think of how you built a life this way. And I think of others who took some time to heal—years even. And I resign myself to never giving up. I resign myself to the daily work. Each day is a building block. I just have to keep doing my daily tasks; my daily baby steps and I’ll get there. For me, there’s no other answer. I believe this IS the answer.

But at the same time, my nervous system is calming down from meditation and self-soothing. This has brought the pain down, and it has taken 2 years. This has also contributed to me being able to do my daily baby steps.

I’m sure this hasn’t answered your question! I guess you’re right. People have to get to the point that they’re willing to try and more importantly, STICK with it! When they get there, things will start to change. You are a good soul for your great dedication to helping people here. But yes, it’s quite thankless sometimes. But you never know. People could be listening to you more than you think. They just haven’t put it into action yet.

 

[Mani]

expect you'll have probably tried it, but have you deliberately thought about and 'heard' (without actually listening to it or singing it or humming it or whistling it) a song or tune in your head? I was wondering if that might work like mental visualization does for athletes when they are preparing and practicing for their event. I was thinking it could be done in baby steps, with just a couple of bars (or less) of the tune or song

Its funny you mention that.

I have indeed tried this before but my brain does shut down really quickly when im actively performing songs in my head. Tinnitus spikes until i stop.

 

[Adam Coloretti (coach)]

@BloodMoon,
I think everything you said about baby steps made sense and it inspired me because you could prove it worked out in your own life. I think it was a good year or more before I was able to climb out of my severe depression. I just literally couldn’t make myself do anything. It all felt pointless.

I think you’re onto something with the rock bottom. There does come a point where you stop wallowing in denial and self-pity and just say to yourself, “if I don’t try harder, I’m going to die like this.” That happened to me. Adding more faith in God, coincided with this. And it gave me an added source of strength to lean on.

I’m STILL resistant to the pain that even baby steps cause. The baby steps are getting easier. But some days, they’re hard again. The progress feels so small sometimes, it can feel pointless. But I also think of how you built a life this way. And I think of others who took some time to heal—years even. And I resign myself to never giving up. I resign myself to the daily work. Each day is a building block. I just have to keep doing my daily tasks; my daily baby steps and I’ll get there. For me, there’s no other answer. I believe this IS the answer.

But at the same time, my nervous system is calming down from meditation and self-soothing. This has brought the pain down, and it has taken 2 years. This has also contributed to me being able to do my daily baby steps.

I’m sure this hasn’t answered your question! I guess you’re right. People have to get to the point that they’re willing to try and more importantly, STICK with it! When they get there, things will start to change. You are a good soul for your great dedication to helping people here. But yes, it’s quite thankless sometimes. But you never know. People could be listening to you more than you think. They just haven’t put it into action yet.

Agreed, especially with the last part - some people might remember what you said 6 months ago and it might help them immensely at that later time (and they may not come back and thank you lol).

 

[Diana-M]

Part 2 @BloodMoon, I’ve been thinking about this question still! And I also think there’s a part of me (and I notice other people too) who think if they just find what’s causing their rage through journaling and therapy, etc, then they won’t have to do the hard part of getting on with living life in pain. We all look for the easier way out. And it’s confusing. There is a lot to sort through. After some time goes by, you realize there are no shortcuts, though. It’s going to be painful. You have to fight your way through. And on top of it, you’re going to have to do it very slowly!

 

[Rabscuttle]

Part 2 @BloodMoon, I’ve been thinking about this question still! And I also think there’s a part of me (and I notice other people too) who think if they just find what’s causing their rage through journaling and therapy, etc, then they won’t have to do the hard part of getting on with living life in pain. We all look for the easier way out. And it’s confusing. There is a lot to sort through. After some time goes by, you realize there are no shortcuts, though. It’s going to be painful. You have to fight your way through. And on top of it, you’re going to have to do it very slowly!

yes I agree, from journalling or reflecting on the past or processing trauma you may get the answer as to why you’re dealing with nervous system dysfunction/tms, but at a certain point you’re going to have to start living and facing fears as they relate to the symptoms. I think, unfortunately and unintentionally the concept of a book cure or a quick program cure has done a lot of harm in this space. The vast majority seeking out a forum like this have had their lives so derailed and are in such despair, it’s wishful thinking at best or just plain delusion (which I get) to think the fix will be quick. I remember back in May when I joined I thought I was close to getting out of this. I had only really just begun. We are all on our unique journey and timelines should be disregarded, and as you’ve wisely said, it will happen when it happens. And honestly, as much I wish it were my reality, what would a book cure have done for me? My issues are way more encompassing than rage or repressed emotions, or obsessing about the physical. It was complete and utter dysfunction in terms of how I was living and treating myself. I needed this. It’s quite a thing to be in pain and still be the happiest and most hopeful you’ve ever been. What will my life look like when it’s gone for good?

 

[BloodMoon]

Its funny you mention that.

I have indeed tried this before but my brain does shut down really quickly when im actively performing songs in my head. Tinnitus spikes until i stop.

"Really quickly" - mmmmm... so perhaps you could try going 'under the radar', so to speak, and perform in your head just a teeny weeny section from a song or piece of music and then stop... before it shuts down. Then do the same thing the next day and then for a couple of weeks and then increase the amount a teeny weeny bit, following the same pattern. It might be glacially slow, but what I found with own particular symptoms is that if you don't dwell on the slowness, you suddenly realise that you're doing far more than you ever thought possible.

 

[BloodMoon]

Agreed, especially with the last part - some people might remember what you said 6 months ago and it might help them immensely at that later time (and they may not come back and thank you lol).

I like to think so, i.e. that it might have sown a seed that will 'germinate' later on. I do that with my husband... sow a seed about something in talking about it generally... at some point later on he comes up with the idea as if it were his own! Magic! lol

 

[BloodMoon]

I think, unfortunately and unintentionally the concept of a book cure or a quick program cure has done a lot of harm in this space.

I definitely agree with that. A book cure also ties in with the way modern medicine works (when it does work for certain things)... take a course of tablets and the symptoms go... I think we're conditioned to that expectation. The other thing that someone else was saying (can't remember who, it might have been Ellen) is that they have noticed from postings on the forums over the years that book cures are inclined not to be book cures for the long term. It turns out that they really needed to change some things.

It’s quite a thing to be in pain and still be the happiest and most hopeful you’ve ever been.

Oh, my goodness, it brought a tear to my eye reading that! You've really got this, Rabs!

 

[BloodMoon]

@Diana-M Thank you! I'm going to 'marinate' over night in what you've said in your last two messages and I intend to reply tomorrow.