I’m hurting so bad

Mani

Mani

Well known member
I feel like ive been responding to sounds so well for months. I’m getting better at dealing with loud noise but ive been listening to planes flying over 24/7 without paying them any mind and i just feel like after months of this they maybe couldve gotten a little less loud.

All my friends are on vacation together and I just feel stuck. At this speed I’ll be doing this til im in a box. I also feel like one little setback could trigger a major relapse. Progress is slow and setbacks are way faster. I do not feel like I’m the one behind the wheel. I noticed this these last few days. Little more sensitive, little more this little more that. I feel like i deserve rewards for my hard work and bravery. I’m sick of this. I wish i could give up and itd just all stop

I’ve been dying inside. I have the greatest friends. They still make me so happy whenever i text with them.

My parents dont understand my problems. They like to think they know it all — they dont. Theyre not the reason im not improving.

You know like the way ive been dealing with planes has been awesome. Also like those fucking flies that eat shit and buzz ive been dealing with them better than my parents. I went for a long walk with my folks. I listened to music for 40 mins.

Today i couldnt do shit. I slept for 4 hours just during the day. It started yesterday. Dont really know what caused it. I feel like I’m heading nowhere. I just want sounds to get less lound — I’m sick of them.


edit: i also need a woman. I just miss my life man. Its dehumanizing this.
 
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Mani said:
At this speed I’ll be doing this til im in a box.
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It took me around four years to get out of being totally bedridden for over 18 months, after being housebound for a couple of decades (and before that, around another decade as "the walking wounded" with back pain and other mind-body symptoms – not noise sensitivity, but a similar kind of trap).

Looking back, I'm convinced things would have moved along much faster than over a period of 4 years (i.e. once I'd accepted that my symptoms were mind-body/TMS) if I'd made more of a life for myself while housebound – something that didn't rely on getting rid of symptoms and returning to my old life. Dr Sarno's advice to 'get on with normal life' doesn't always or necessarily mean getting back to one's old life; often parts of that old life helped bring on or perpetuated symptoms in the first place.

What shifted things for me was realising that 'normal life' could mean building a new kind of life that worked around my nervous system, rather than waiting for it to go back to how it was. It also meant being flexible with my thinking, open to getting involved in things I hadn't planned for myself and wouldn't otherwise have chosen to do. People here have already talked about learning sign language as a way to build a life around severe noise sensitivity, and I think that's exactly the right kind of thinking.

I also get how easy it is to baulk at that. The idea of "maybe I need to build a life that allows for these symptoms sticking around for a while or, heaven forbid, forever" can feel like surrender. The irony I didn't expect was that once I started investing in a new life – one that didn't hinge on my symptoms changing – bits of my old life gradually became possible and tolerable again.

It reminds me a bit of sailing. If the wind is against you, you tack instead, heading off at an angle. It can feel counterintuitive, even frustrating, because you're not travelling in a straight line. But each tack is still part of getting where you're going. Building a life that accommodated my fluctuating symptoms felt like that. At the time it seemed like I was moving away from recovery, but in hindsight it was one of the things that got me there.

You're already doing hard things – tolerating planes, flies, long walks, listening to music, staying connected with friends. I'm not saying you're not doing enough. You clearly are.

The question I'd pose (and that I wish I'd asked myself earlier) is: if symptoms, in your case sound sensitivities, stayed exactly as they are now, what version of your life could you start building that doesn't need them to change? Maybe that's sign language, maybe it's something else. The point is that your life gets to be bigger than "getting better at tolerating noise".

By the way, one thought I had about the tiredness is that it could be because you're listening to music, going for long walks and generally asking your nervous system to do more. In my experience, that kind of reaction often turned out to be 'recalibration' rather than me going backwards. When new symptoms appeared, or old ones intensified or came back, it was easy to label it a crash or a flare. But it was just part of the process rather than evidence that I'd gone backwards. It can seem completely nonsensical, but that was my experience.
 
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BloodMoon said:
It took me around four years to get out of being totally bedridden for over 18 months, after being housebound for a couple of decades (and before that, around another decade as "the walking wounded" with back pain and other mind-body symptoms – not noise sensitivity, but a similar kind of trap).

Looking back, I'm convinced things would have moved along much faster than over a period of 4 years (i.e. once I'd accepted that my symptoms were mind-body/TMS) if I'd made more of a life for myself while housebound – something that didn't rely on getting rid of symptoms and returning to my old life. Dr Sarno's advice to 'get on with normal life' doesn't always or necessarily mean getting back to one's old life; often parts of that old life helped bring on or perpetuated symptoms in the first place.

What shifted things for me was realising that 'normal life' could mean building a new kind of life that worked around my nervous system, rather than waiting for it to go back to how it was. It also meant being flexible with my thinking, open to getting involved in things I hadn't planned for myself and wouldn't otherwise have chosen to do. People here have already talked about learning sign language as a way to build a life around severe noise sensitivity, and I think that's exactly the right kind of thinking.

I also get how easy it is to baulk at that. The idea of "maybe I need to build a life that allows for these symptoms sticking around for a while or, heaven forbid, forever" can feel like surrender. The irony I didn't expect was that once I started investing in a new life – one that didn't hinge on my symptoms changing – bits of my old life gradually became possible and tolerable again.

It reminds me a bit of sailing. If the wind is against you, you tack instead, heading off at an angle. It can feel counterintuitive, even frustrating, because you're not travelling in a straight line. But each tack is still part of getting where you're going. Building a life that accommodated my fluctuating symptoms felt like that. At the time it seemed like I was moving away from recovery, but in hindsight it was one of the things that got me there.

You're already doing hard things – tolerating planes, flies, long walks, listening to music, staying connected with friends. I'm not saying you're not doing enough. You clearly are.

The question I'd pose (and that I wish I'd asked myself earlier) is: if symptoms, in your case sounds, stayed exactly as they are now, what version of your life could you start building that doesn't need them to change? Maybe that's sign language, maybe it's something else. The point is that your life gets to be bigger than "getting better at tolerating noise".

By the way, one thought I had about the tiredness is that it could be because you're listening to music, going for long walks and generally asking your nervous system to do more. In my experience, that kind of reaction often turned out to be 'recalibration' rather than me going backwards. When new symptoms appeared, or old ones intensified or came back, it was easy to label it a crash or a flare. But it was just part of the process rather than evidence that I'd gone backwards. It can seem completely nonsensical, but that was my experience.
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Thanks moon. I was just spiralling and wanted to put it all out there. Music has actually been going terrific. Listening to music right now actually:). Im just not going as fast as i want to. Especially that sounds are not really getting softer. I’m just getting better at coping with loud sounds, which is improvement ig?? Im just sick of loud sounds.
 
I want to say:

This particular song I used to listen to was too much just a week ago. Now it isnt. Progress

I just wish sounds would get less loud. Like im getting better and better at dealing with loud sounds. I was so down but i can listen to songs; i couldnt just one month ago. Crazy, its a bumpy road.

I was honestly a little ashamed after this post. The ‘woe is me’ gets old quick. I just want to live man. Its frustrating to see my friends do well and me being the handicapped idiot
 
Cars and planes are my kryptonite at the moment. If they got a little softer i could go outside much more. I cant wait to do stuff again.

One thing that worries me:

I was in a similar situation 2 years ago and i tried to get on with life but i was stopped in my tracks by the tms. I need to do something differently this time around. Dont quite know what it will be.

Cant wait to get my ass to the barber. Its been more than 2 years
 
"I was in a similar situation 2 years ago and i tried to get on with life but i was stopped in my tracks by the tms. I need to do something differently this time around. Dont quite know what it will be."

"Getting on with my life" was BEFORE you really knew more about TMS. You tried getting on with your life the way you always got on with it: being really self-critical, not admitting the depth of your anger/rage, feeling like self-soothing and self compassion wasn't fitting into some vision of yourself you crafted that you "should" be vs. the person you truly are... self-acceptance, self-love, an awareness of inner peace....

In this fairly short time, look at all the amazing things you have accomplished Mani! You talk about where your friends are at in life, but I see you as miles ahead of them in human-ness, in your understanding and self-understanding.

Here are some things you might want to continue considering:

TMS is part of being a human living being: we have a mind/body connection. ALL of your friends will at some point feel it. Will you continue to fear it or will you begin to be more accepting of it, how it manifests in you and see it simply as a part of you. Of course when it starts doing it's think the bells will ring, you will be "oh, oh!" but then what will you choose to do? It's that choice, that message of panic vs. some kind of understanding you know what is going on that will change the whole experience. You are already changing this. The first time around you experienced a strong secondary fear and panic as to all the things that were making you feel insecure, afraid, scared and unsafe in the first place. You just really didn't realize that was going on inside of you. You judged these things and the anxiety. The alarm bells got louder!
Now you know that you sometimes feel scared, anxious, insecure and unsafe - and it's OK and normal to do so. Other people mask it and try to pretend it's not there, but now you know what that leads to. So sometimes you might get some sort of symptoms but you also really do have an awareness of what to do.
Self-compassion, remind yourself of the knowledge of what TMS is: the science behind it, you have tools: you can draw or journal about your feelings. You can check all the internal negative, self-blaming and self-victimizing thoughts at the door - not going there! You can remind yourself you have been through this before and that you are so incredibly strong you overcame (which you are doing! So proud of you!). Your fortitude and tenacity will once again be incredibly obvious and you will remind yourself that feeling all the complicated feelings and stressors is OK because you CAN handle it. You also know that you can see help when needed: you've reached out before and there is no shame in getting help from this form, from psychologists, friends, coaches - anyone.

My suggestion is that you start a small little journal you keep with a few reminders in it. I think you would really benefit from printing out Dr. Sarno's 12 daily reminders - these are things you already seem to review when you are feeling down or angry. Write a list of practices you enjoy and can do or at least tolerate: journaling, meditation, drawing. A list of your amazing personality traits: tenacity, fortitude, insight, dedication, awareness of core values - a reminder for when you feel down. Don't end that list, add to it when you need to. Add one or two other things: a few quotes or things books you really value that have taught you some of the skills you've learned and tuck it away. Pull it out when you need it. It's not the kind of journal you spew your thoughts onto the page. It's just a little reminder that you know what to do when needed.
 
Mani said:
I was in a similar situation 2 years ago and i tried to get on with life but i was stopped in my tracks by the tms. I need to do something differently this time around. Dont quite know what it will be.
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I'm going to risk being accused of labouring a suggestion that I think you may possibly have already mentally rejected, and that is to build a new life that works around your nervous system, gradually introducing and getting involved in stuff that you wouldn't necessarily choose to do (as a first choice) but would nevertheless be good (and perhaps interesting and absorbing) to do anyway, rather than waiting for it to go back to how it was. Your 'lizard' brain doesn't want you to get on with your old life as it was because there are aspects of it that it doesn't like, that makes it fearful. (I say 'gradually' because the TMSing brain can baulk at sudden changes and create symptoms, even when those changes are innocuous.)

You are, there's no doubt, making great headway, what with being able to listen to music that you couldn't tolerate before etc. However, you are expressing frustration about the general slowness of your progression and, from my experience anyway, I really want to emphasise that the most wholesale, significant changes are liable to happen when you're 'busy doing other things', rather than spending any time reflecting about how TMS stopped you in your tracks in the past and reflecting on how you are faring compared to you peers...

As @Cactusflower wisely says: that was then and this is now - you now have the understanding and tools to deal with the flaring of symptoms and, as I said in my first posting above, I believe - and from my own experience - they are not about going backwards, they are a reconfiguration... Your brain is saying 'Are you sure about all this?' and you answer 'yes' by getting on with the life you're creating for yourself from where you are. And eventually your brain will also allow bits of your old life to be possible and tolerable again.
 
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BloodMoon said:
our 'lizard' brain doesn't want you to get on with your old life as it was because there are aspects of it that it doesn't like, that makes it fearful.
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This is spot on, and if I had to make a list of things that keep people stuck from what I've seen, this would be right at the top of the list. Romanticising the past. Now obviously from an objective point of view was life "better" without symptoms? In many ways yes, there's no denying that. But if you simply wish for your old life back then you may be missing the purpose of the symptoms.

That's not to say that you have to admit you were completely miserable before the symptoms (although if that's true, then admitting it helps), but if it's correct to say that the symptoms have purpose to push you towards a better life (or to push you towards dealing with things, treating yourself better etc.), then romanticising the past too much is going to mean we may completely miss the point and also miss the factors that lead to the symptoms in the first place (which are often key in recovery). By doing this too, you're more likely to feel as if the symptoms are purposeless and are just a punishment, which keeps you locked in victim mode.

None of this is to say that this is ever the person's fault, and it might seem counter intuitive to look back on life with a negative lens - but for me at least feeling as if the symptoms had purpose (albeit they were terribly painful and obviously we wish it could get its point across in other ways) was huge in my recovery, if I never got to that point I'd probably still be in pain. In other words, admitting to myself that in many ways I was miserable beforehand actually helped my recovery (in more ways than one - both mentally but also strategically).
 
@BloodMoon @Adam Coloretti (coach) @Cactusflower

Thank you all for your thoughts. It really helps to have people think along with me. I have to say I felt so down today. We all have our needs. I’m deeply insecure. I still worry a lot about how my life will look. Will i be able to fit in when i do get better? I have lots of doubts still. Today I was just so frustrated: ‘theyre all out there and im stuck!’ I just went for a short car ride with a friend of mine; I quite enjoyed it.

I think self compassion wise, I still have a lot to learn. My entire life I’ve been frustrated about missing out — about other people having more fun than me. I have an incredible fear of rejection.

Usually when youre unhappy about certain aspects of your life you can get up and try to change them. If you feel lonely you can just try to start talking to people. I know thats scary too and not everyone will be able to do it but at least you can move towards a goal. That’s in part whats frustrating me. I want to be desired and meet new people, but I can’t. That makes me feel terrible about myself and about how ill be able to handle future social situations.

Self compassion is also just accepting your life as it is. You dont have to approve of it — but you can make peace with it. This is easier said than done and I still grow frustrated from time to time. At least I know where it comes from. Uncomfortable feelings are meant to be felt. I feel sad and frustrated about stuff not going my way, but that is just the way it is for now.

I want to become steadfast; to be able to live freely without worrying so much. To just accept things the way they are. I have a long bumpy road ahead of me. I have so many worries, but im trying to accept the uncertainty. I dont know what lies ahead.

Thanks for reading and responding. Peace
 
@Mani I think it's less about being deeply insecure than it is about JUDGING yourself for the insecurity. One thing that really helped me is to constantly repeat that other peoples thoughts and judgements about myself are not true.
Heck, my own thoughts and judgements towards myself aren't true!
Fact is, that most people aren't thinking about you as much as you think they are.

What will happen if you miss out? Will it hurt you (physically) will you be unsafe? You need to put these kinds of thoughts/perceptions in the frame of TMS. You will feel EMOTIONALLY hurt. You will feel ABANDONED - by OTHERS but what about by you. You are your most important ally and your most important supporter and friend. Cultivate that friendship, that bond with yourself and a wonderful way to do that is by meditation. I think people who struggle with meditation are simply afraid to be alone with themselves and their minds because they cling to their thoughts like they are beliefs and truths. I think you might also be doing this, which is natural because we are taught to believe everything that goes on in the mind.
"Usually when youre unhappy about certain aspects of your life you can get up and try to change them. If you feel lonely you can just try to start talking to people. I know thats scary too and not everyone will be able to do it but at least you can move towards a goal. That’s in part whats frustrating me. I want to be desired and meet new people, but I can’t. That makes me feel terrible about myself and about how ill be able to handle future social situations."
How many people here have written about trying to go out and meet people and then being angry that people won't behave the way they want them to? LOTS. You have thoughts about what the "usual way" is and that is the old way you used to think and believe. It's not necessarily the way that will work for you. Loneliness is most often not because we are alone, not because we don't have a "someone" but because we don't actually LIKE the someone we do have, which is ourself. Unhappy people don't usually try to change aspects about themselves. They wallow in that unhappiness, cling to it like a vine and complain out the wazoo about how unhappy they are and can not change and don't truly want to change. They are TERRIFIED of change.
YOU on the other hand are looking for ways you can change and exploring those ways - a lot of that is what you are going through, a lot of it is simply the part of coming of age. Acceptance is not necessarily "just" a passive thing of "accepting" life as it is and it's much less about acceptance as it is to setting crap free. The things we think we believe (or we truly believe) because those things seem like in some abstract way to make life "easier". You want *EVERYONE* to like you and to want to be with you and how will that makes the times you are alone easier to be with yourself? It's putting the cart before the horse.
You've had these thoughts for a long time, but they have not served you, have they?
Right now you do feel rightfully lonely, you are working towards getting out and doing things and doing a good job of it. Sure you have ups and downs and it is hard to walk a road that is kind of lumpy and bumpy with a lot of twists and turns, but you're still on that road. Now you have to find away to allow being the lone driver less scary. Being with yourself a little more enjoyable or at least tolerable.
TMS and a very activated nervous system is often described as the reaction of always feeling like a lion is about to attack you. You aren't the lion in the room with yourself and you need to teach your brain and mind this.
 
Cactusflower said:
I think it's less about being deeply insecure than it is about JUDGING yourself for the insecurity.
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100%! It's the second arrow of thinking that no one else feels this way. The biggest progress I've made by far with my social anxiety (and I accept that mine isn't as serious, if it was a lot worse this might not be as effective) is accepting it as normal and telling myself "it's normal to be nervous and care what other people think, welcome to being a human being". The self-judgment for having the anxiety (and caring what other people think, the horror!) has always been way worse and way more dysregulating for me than the anxiety itself.

I think like @Cactusflower said it is a coming of age thing, because when you're younger you're more susceptible to this idea (that you see in movies and that grifters promulgate) that there are people who are perfectly confident and never get stressed, nervous or self-conscious (and that's what leads to fame and fortune etc.). It's complete nonsense. Of course there are levels to that (and if someone has really bad social anxiety, then I do believe change needs to be looked at to allow them to function day-to-day), but I would say for most acceptance is more important than large scale change (it's a change of mindset rather than anything tangible).
 
Its 5am and im losing sleep over total nonsense again btw. my brain is a kamikaze pilot. I just want some peace of mind but i cant let go. I think its signaling that something isnt quite right with me. I dont think its about the thoughts themselves honestly.
 
Mani said:
Its 5am and im losing sleep over total nonsense again btw. my brain is a kamikaze pilot. I just want some peace of mind but i cant let go. I think its signaling that something isnt quite right with me. I dont think its about the thoughts themselves honestly.
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Choice. This is a very clear tenant of Clair Weekes. Did you read any of her little books? "My brain is a kamikaze pilot" - that's anxiety, and it's not about the thoughts, it's about you JUDGING yourself for having those thoughts, it's about the hampster wheel of a busy mind which constantly repeats junk like perceived failures, doom scenarios, guilt, shame and a million other things. But there is a choice. You can worry that you worry, or you can reduce the worry.
One simple step can reduce the worry. That is to stop worrying that you worry!
I love that you notice this is nonsense. But you mention it's nonsense and then you judge yourself for being "not quite right". That too is nonsense. You are Mani, you are just fine as you are anxiety and all. People on this forum are quite taken with you. Last night was just a sleepless night.
Sometimes the mind has to chew a little cud before you can let go. You have to stop fighting letting it go. Setting the anxieties, worrying about worries, free over time is a process. It's like a little dove you let out of the cage that is so happy to fly free, but it also likes to come and visit again for awhile. OCD like thinking is simply part of TMS and there are many, many success stories about how people stop buying into the struggle.
 
Cactusflower said:
My brain is a kamikaze pilot" - that's anxiety, and it's not about the thoughts, it's about you JUDGING yourself for having those thoughts, it's about the hampster wheel of a busy mind which constantly repeats junk like perceived failures, doom scenarios, guilt, shame and a million other things. But there is a choice. You can worry that you worry, or you can reduce the worry.
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I just worry that i wont be able to fit in. That i wont get to meet the people i want to. That i wont be able to express myself authentically. I have had those intrusive thoughts you talked about to but those indeed lost all power when i just accepted my thoughts. I know the worrying gives me nothing… I think i just dont really believe ill ever be able to go to a pub for example. That just makes me sad and worried that i wont be able to find the right person for me.

edit: some trip i wont be able to go on… Theres a lot of uncertainty and it just makes me sad and worried. Big fomo but especially because i dont want my partner to have lived theough a certain period while i was… yeah idk.
 
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