I’m hurting so bad

[Mani]

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.

 

[BloodMoon]

At this speed I’ll be doing this til im in a box.

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.

 

[Mani]

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.

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.