en-bat-y

en-bat-y

Member
Nov 4, 2023
22
idk what to label this so i think i'll start by typing and seeing where i go.

i was born extremely sensitive to common products, it made my life hell from the start and got worse in time. Plus having multiple other disabilities. Being in a poor and abusive family also meant i didn't get access to specialists. For 30 years i've been sick and isolated. All the trauma from it and people's treatment of me has led to my having severe anxiety issues. i left my mom's home, she died soon after. i was placed in adult foster care. I loved them but they had alot of their own stress and were quick to blame me for things or to pre-emptively expect me to cause problems. I couldn't figure out how to get my needs met and help them understand me, i shoulda tried harder i think. maybe if i'd started hormones sooner or something, idk. We also still clashed over my health issues and i still struggled to get access to the medical care i need. Ultimately i was placed into another, much worse, foster. it was only supposed to be temporary while we got an apartment sorted but it's dragged on and i've been suffering in these conditions. In-patient was even worse. My doctor worries if i can't get out and finally get care i'll be institutionalized and my attempts to get help have led to my being threatened with this if i try for medical care again. Many other disabled people i know are also suffering medical neglect and new laws are going into process to institutionalize more of us. i'm extremely malnourished and so tired. i feel so nauseated and miserable i can't stand it. i had been tested for MCAS but it came out negative, there's suspicion it may have been botched so i'm trying an otc treatment method. at least i haven't thrown up yet today (still early here) though i feel so empty and tired, still so sick and stressed. another dr thought maybe MS as it matches perfectly except for how young i was when i started showing symptoms. Idk. Of course, there's also the terror that the more i'm exposed to these things the more permanent damage i'll have. it's horrifying to think of how my body and mind are being eaten alive by this situation. i'm in so much pain.

i feel like even if the otc idea works i'm just so tired of this. people are trying and i'm thankful for them but it's gone so long with so much going wrong i feel liek there's nothing they can do. every tiny thing sends me panicking now. i'm a raw nerve of misery at this point. Even the clicking of my keyboard makes me want to burst into tears.

I tried finding the arteries in my neck and i thought i almost got it but i didn't quite passout and i haven't gotten that close again since. i've always had a hard time finding my pulse, i'd find it and then it'd disappear, maybe because of my POTS? someone explained it once but i can't remember. i don't have much strength in my hands. i'm wondering about the night-night method, wondering too if sleeping pills could make it or asphyxiation with a bag more effective/peaceful. i don't have tape so that's a concern, wouldn't want things coming loose. I don't have access to much being poor and stuck in my room. I'm so unbearably tired and stressed. I've been screaming for help for so long and the world just keeps playing with me like a cat plays with its food. i don't wanna play anymore, i just want peace.
 
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distropian_

distropian_

Member
Nov 4, 2023
12
that seriously sounds tough, it sounds like you've been struggling pretty much your entire life which is upsetting to me. although I don't have any disorders or disabilities, I do believe that there could be some motivation to be found in it, you're right in the sense that people with disorders and disabilities have it much harder in life, and I think that if you ever try self improvement you could use it as fuel to prove to the world that even though you were born with these issues you are able to accomplish your goals. I don't know what methods you've taken in your life to try and improve but my advice would be to try and chase a goal, whether that's helping yourself, or helping others. I do genuinely believe that every person has something unique to offer. I don't know if I can really help all that much but I thought I may as well try I suppose.
 
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en-bat-y

en-bat-y

Member
Nov 4, 2023
22
that seriously sounds tough, it sounds like you've been struggling pretty much your entire life which is upsetting to me. although I don't have any disorders or disabilities, I do believe that there could be some motivation to be found in it, you're right in the sense that people with disorders and disabilities have it much harder in life, and I think that if you ever try self improvement you could use it as fuel to prove to the world that even though you were born with these issues you are able to accomplish your goals. I don't know what methods you've taken in your life to try and improve but my advice would be to try and chase a goal, whether that's helping yourself, or helping others. I do genuinely believe that every person has something unique to offer. I don't know if I can really help all that much but I thought I may as well try I suppose.
i appreciate the thought but feel the idea that i'm not trying and need self-improvement is a bit... unfair? maybe. My adaptability, self-awareness, passion and love of learning, empathetic care towards others, etc. have been praised and even my therapists and Dr have been impressed at times with my ability to manage things almost instinctively. Still, there's a limit, i can only hack my own system so much while feeling awful before i crash. It hurts that when i'm pushing myself to smile and work my hardest people take it for granted, but when i eventually break and say i need help people judge me as being over-dramatic and not giving a genuine attempt at things. still i do appreciate the thought, advocacy including sharing experiences is important for sure.
 
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distropian_

distropian_

Member
Nov 4, 2023
12
i appreciate the thought but feel the idea that i'm not trying and need self-improvement is a bit... unfair? maybe. My adaptability, self-awareness, passion and love of learning, empathetic care towards others, etc. have been praised and even my therapists and Dr have been impressed at times with my ability to manage things almost instinctively. Still, there's a limit, i can only hack my own system so much while feeling awful before i crash. It hurts that when i'm pushing myself to smile and work my hardest people take it for granted, but when i eventually break and say i need help people judge me as being over-dramatic and not giving a genuine attempt at things. still i do appreciate the thought, advocacy including sharing experiences is important for sure.
well I believe that everyone should be on a form of self improvement in one way or another, wasn't at all trying to antagonize you in any way sry. I don't think that you're not trying, I just don't know what you HAVE tried since idk you, which is why the only suggestion I could make rn is self improvement
 
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ClownWorld2023

Arcanist
Sep 18, 2023
449
i was born extremely sensitive to common products

What products exactly? Like certain foods, or sensitivity to certain fragrances/smells, household chemicals etc?
 
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en-bat-y

en-bat-y

Member
Nov 4, 2023
22
What products exactly? Like certain foods, or sensitivity to certain fragrances/smells, household chemicals etc?
soaps, deodorants, lotions, perfumes, air-fresheners, candles, laundry softeners, chlorine, weedkillers, pesticides, preservatives, alot of foods and medicines, i'm even allergic to the sun. when i was a baby my eyes would get all red and my nose would run and all from being in a car with a freshener or even from entering a new building
 
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ClownWorld2023

Arcanist
Sep 18, 2023
449
soaps, deodorants, lotions, perfumes, air-fresheners, candles, laundry softeners, chlorine, weedkillers, pesticides, ...


Yea.. I already feared you would mention this.

This sounds like "multiple chemical sensitivity".


If you've never heard of this, brace yourself, you're in for some ugly truths.
There are websites that explain what it exactly is, and some videos/documentaries on Youtube.
 
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en-bat-y

en-bat-y

Member
Nov 4, 2023
22
Yea.. I already feared you would mention this.

This sounds like "multiple chemical senstivity".


If you've never heard of this, brace yourself, you're in for some ugly truths.
There are websites that explain what it exactly is, and some videos/documentaries on Youtube.

right? that's what i think too but people tend not to believe me when i bring it up and the Wikipedia for it is awful so i hesitated to mention it. It really is such a hopeless condition, i've seen so many people in groups abandoned by family, forced into homelessness, suffering horribly. And no one ever believes us, they just say we're crazy.
since you know about it i'm guessing you have some experience?
well I believe that everyone should be on a form of self improvement in one way or another, wasn't at all trying to antagonize you in any way sry. I don't think that you're not trying, I just don't know what you HAVE tried since idk you, which is why the only suggestion I could make rn is self improvement
fair and no hard feelings, it's kinda difficult to say what i've tried since it's been a lifelong process of adjusting, testing, and backtracking. Like i don't even know how to quantify it at this point.
 
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ClownWorld2023

Arcanist
Sep 18, 2023
449
right? that's what i think too but people tend not to believe me when i bring it up and the Wikipedia for it is awful so i hesitated to mention it. It really is such a hopeless condition, i've seen so many people in groups abandoned by family, forced into homelessness, suffering horribly. And no one ever believes us, they just say we're crazy.
since you know about it i'm guessing you have some experience?

I have it myself, but it's just one of the many health issues I have.

There's no known "cure" for it.

But the worst part is the fact that there is excessive and incessant lobbying from the chemical industry to thwart all efforts of getting it acknowledged and researched.
 
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en-bat-y

en-bat-y

Member
Nov 4, 2023
22
I have it myself, but it's just one of the many health issues I have.

There's no known "cure" for it.

But the worst part is the fact that there is excessive and incessant lobbying from the chemical industry to thwart all efforts of getting it acknowledged and researched.
all my empathy. yea, i also have POTS and EDS (vascular version so ruptures can and have happened) and DID and PTSD and ADHD and am Autistic. Vocal chord issues. but the MCS is the worst for me.

true, one friend shared a vaccine that's being made for MS that she wonders if it'll work for this too but hard to say.

definitely, it's all pushed so much that most people i talk to think that not having these chemicals is completely impossible which like is obviously not true as i'm able to live without these products and so are many others. There's also that some are literally banned in other places for how toxic they are but people can't let them go because it's so stuck in society that they must use them.
 
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C

ClownWorld2023

Arcanist
Sep 18, 2023
449
all my empathy. yea, i also have POTS and EDS (vascular version so ruptures can and have happened) and DID and PTSD and ADHD and am Autistic. Vocal chord issues. but the MCS is the worst for me.

true, one friend shared a vaccine that's being made for MS that she wonders if it'll work for this too but hard to say.

definitely, it's all pushed so much that most people i talk to think that not having these chemicals is completely impossible which like is obviously not true as i'm able to live without these products and so are many others. There's also that some are literally banned in other places for how toxic they are but people can't let them go because it's so stuck in society that they must use them.

There's not much that can be done in this case.
I'm sorry for what you had to go through in your life.
 
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B

brokeandbroken

Enlightened
Apr 18, 2023
1,047
idk what to label this so i think i'll start by typing and seeing where i go.

i was born extremely sensitive to common products, it made my life hell from the start and got worse in time. Plus having multiple other disabilities. Being in a poor and abusive family also meant i didn't get access to specialists. For 30 years i've been sick and isolated. All the trauma from it and people's treatment of me has led to my having severe anxiety issues. i left my mom's home, she died soon after. i was placed in adult foster care. I loved them but they had alot of their own stress and were quick to blame me for things or to pre-emptively expect me to cause problems. I couldn't figure out how to get my needs met and help them understand me, i shoulda tried harder i think. maybe if i'd started hormones sooner or something, idk. We also still clashed over my health issues and i still struggled to get access to the medical care i need. Ultimately i was placed into another, much worse, foster. it was only supposed to be temporary while we got an apartment sorted but it's dragged on and i've been suffering in these conditions. In-patient was even worse. My doctor worries if i can't get out and finally get care i'll be institutionalized and my attempts to get help have led to my being threatened with this if i try for medical care again. Many other disabled people i know are also suffering medical neglect and new laws are going into process to institutionalize more of us. i'm extremely malnourished and so tired. i feel so nauseated and miserable i can't stand it. i had been tested for MCAS but it came out negative, there's suspicion it may have been botched so i'm trying an otc treatment method. at least i haven't thrown up yet today (still early here) though i feel so empty and tired, still so sick and stressed. another dr thought maybe MS as it matches perfectly except for how young i was when i started showing symptoms. Idk. Of course, there's also the terror that the more i'm exposed to these things the more permanent damage i'll have. it's horrifying to think of how my body and mind are being eaten alive by this situation. i'm in so much pain.

i feel like even if the otc idea works i'm just so tired of this. people are trying and i'm thankful for them but it's gone so long with so much going wrong i feel liek there's nothing they can do. every tiny thing sends me panicking now. i'm a raw nerve of misery at this point. Even the clicking of my keyboard makes me want to burst into tears.

I tried finding the arteries in my neck and i thought i almost got it but i didn't quite passout and i haven't gotten that close again since. i've always had a hard time finding my pulse, i'd find it and then it'd disappear, maybe because of my POTS? someone explained it once but i can't remember. i don't have much strength in my hands. i'm wondering about the night-night method, wondering too if sleeping pills could make it or asphyxiation with a bag more effective/peaceful. i don't have tape so that's a concern, wouldn't want things coming loose. I don't have access to much being poor and stuck in my room. I'm so unbearably tired and stressed. I've been screaming for help for so long and the world just keeps playing with me like a cat plays with its food. i don't wanna play anymore, i just want peace.
What are your symptoms? Maybe I can help. Not a doctor but did go to medical school...
 
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en-bat-y

en-bat-y

Member
Nov 4, 2023
22
What are your symptoms? Maybe I can help. Not a doctor but did go to medical school...
they vary a bit alot of it is like allergies/the flu, sneezing, coughing, nausea, runny nose, gunk, pain on contact in nose, head, eyes, lungs, migraines, spasming ("bouncy nerves" to quote the DR who thought it might be MS), dizziness/fog (some deodorant once left me barely conscious and drooling on my desk). tightness in lungs and throat, with food alot of it feels anaphylactic like, also numbness.
 
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sserafim

sserafim

brighter than the sun, that’s just me
Sep 13, 2023
9,013
idk what to label this so i think i'll start by typing and seeing where i go.

i was born extremely sensitive to common products, it made my life hell from the start and got worse in time. Plus having multiple other disabilities. Being in a poor and abusive family also meant i didn't get access to specialists. For 30 years i've been sick and isolated. All the trauma from it and people's treatment of me has led to my having severe anxiety issues. i left my mom's home, she died soon after. i was placed in adult foster care. I loved them but they had alot of their own stress and were quick to blame me for things or to pre-emptively expect me to cause problems. I couldn't figure out how to get my needs met and help them understand me, i shoulda tried harder i think. maybe if i'd started hormones sooner or something, idk. We also still clashed over my health issues and i still struggled to get access to the medical care i need. Ultimately i was placed into another, much worse, foster. it was only supposed to be temporary while we got an apartment sorted but it's dragged on and i've been suffering in these conditions. In-patient was even worse. My doctor worries if i can't get out and finally get care i'll be institutionalized and my attempts to get help have led to my being threatened with this if i try for medical care again. Many other disabled people i know are also suffering medical neglect and new laws are going into process to institutionalize more of us. i'm extremely malnourished and so tired. i feel so nauseated and miserable i can't stand it. i had been tested for MCAS but it came out negative, there's suspicion it may have been botched so i'm trying an otc treatment method. at least i haven't thrown up yet today (still early here) though i feel so empty and tired, still so sick and stressed. another dr thought maybe MS as it matches perfectly except for how young i was when i started showing symptoms. Idk. Of course, there's also the terror that the more i'm exposed to these things the more permanent damage i'll have. it's horrifying to think of how my body and mind are being eaten alive by this situation. i'm in so much pain.

i feel like even if the otc idea works i'm just so tired of this. people are trying and i'm thankful for them but it's gone so long with so much going wrong i feel liek there's nothing they can do. every tiny thing sends me panicking now. i'm a raw nerve of misery at this point. Even the clicking of my keyboard makes me want to burst into tears.

I tried finding the arteries in my neck and i thought i almost got it but i didn't quite passout and i haven't gotten that close again since. i've always had a hard time finding my pulse, i'd find it and then it'd disappear, maybe because of my POTS? someone explained it once but i can't remember. i don't have much strength in my hands. i'm wondering about the night-night method, wondering too if sleeping pills could make it or asphyxiation with a bag more effective/peaceful. i don't have tape so that's a concern, wouldn't want things coming loose. I don't have access to much being poor and stuck in my room. I'm so unbearably tired and stressed. I've been screaming for help for so long and the world just keeps playing with me like a cat plays with its food. i don't wanna play anymore, i just want peace.
Yes, especially those with invisible disabilities. I have ADHD, social anxiety and I'm on the spectrum. I look normal on the outside so no one knows that there's something "wrong" with me. My parents also expect me to meet neurotypical standards, and they also expect me get a job and make my own living. They also keep comparing me with the successful neurotypical children of their colleagues. They think I'm a failure because I failed to launch after college, but this world wasn't built or meant for me. It's hard to live in this world as a neurodivergent, and I wish this world could be more understanding of us. Everything is catered towards neurotypical people
 
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B

brokeandbroken

Enlightened
Apr 18, 2023
1,047
they vary a bit alot of it is like allergies/the flu, sneezing, coughing, nausea, runny nose, gunk, pain on contact in nose, head, eyes, lungs, migraines, spasming ("bouncy nerves" to quote the DR who thought it might be MS), dizziness/fog (some deodorant once left me barely conscious and drooling on my desk). tightness in lungs and throat, with food alot of it feels anaphylactic like, also numbness.
Have you been tested for allergies? Are you on any medications or drugs? When did it start? Did he diagnosis you with MS?
 
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en-bat-y

en-bat-y

Member
Nov 4, 2023
22
Yes, especially those with invisible disabilities. I have ADHD, social anxiety and I'm on the spectrum. I look normal on the outside so no one knows that there's something "wrong" with me. My parents also expect me to meet neurotypical standards, and they also expect me get a job and make my own living. They also keep comparing me with the successful neurotypical children of their colleagues. They think I'm a failure because I failed to launch after college, but this world wasn't built or meant for me. It's hard to live in this world as a neurodivergent, and I wish this world could be more understanding of us. Everything is catered towards neurotypical people
so true, people give a quick look and say "you're fine" and it makes it so difficult and painful. it's already so hard but having people insist it's our own fault and that we should jsut do what everyone else can do, makes it so much worse.
Have you been tested for allergies? Are you on any medications or drugs? When did it start? Did he diagnosis you with MS?
yes, i have some confirmed allergies but most others either don't show up or show up as mild despite feeling worse. i've tried many medicines, i'm now trying doubling up allergy medicine, taking aspirin, dramamine, and using vix to try to help my airways. i was born this way so 30 years ago. He was a social security dr, he couldn't diagnose me, he simply had seen alot of people with MS and felt it was a real concern i should be checked for. alot of tests i should have i haven't been able to access.
There's not much that can be done in this case.
I'm sorry for what you had to go through in your life.
i appreciate the kind words <3
 
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FuneralCry

FuneralCry

Just wanting some peace
Sep 24, 2020
38,856
That sounds really horrible what you've had to go through, it's certainly such a hellish existence where people have to suffer so unbearably, but anyway I wish you the best, it's so cruel how people cannot easily die in peace despite this reality.
 
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en-bat-y

en-bat-y

Member
Nov 4, 2023
22
That sounds really horrible what you've had to go through, it's certainly such a hellish existence where people have to suffer so unbearably, but anyway I wish you the best, it's so cruel how people cannot easily die in peace despite this reality.
thanks, it is a cruel world. i feel like if they don't want us to live they should at least give us the option to die but they don't want us to have either only to suffer
 
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HD72

HD72

Humpty Dumpty had a great fall
Sep 10, 2023
294
idk what to label this so i think i'll start by typing and seeing where i go.

i was born extremely sensitive to common products, it made my life hell from the start and got worse in time. Plus having multiple other disabilities. Being in a poor and abusive family also meant i didn't get access to specialists. For 30 years i've been sick and isolated. All the trauma from it and people's treatment of me has led to my having severe anxiety issues. i left my mom's home, she died soon after. i was placed in adult foster care. I loved them but they had alot of their own stress and were quick to blame me for things or to pre-emptively expect me to cause problems. I couldn't figure out how to get my needs met and help them understand me, i shoulda tried harder i think. maybe if i'd started hormones sooner or something, idk. We also still clashed over my health issues and i still struggled to get access to the medical care i need. Ultimately i was placed into another, much worse, foster. it was only supposed to be temporary while we got an apartment sorted but it's dragged on and i've been suffering in these conditions. In-patient was even worse. My doctor worries if i can't get out and finally get care i'll be institutionalized and my attempts to get help have led to my being threatened with this if i try for medical care again. Many other disabled people i know are also suffering medical neglect and new laws are going into process to institutionalize more of us. i'm extremely malnourished and so tired. i feel so nauseated and miserable i can't stand it. i had been tested for MCAS but it came out negative, there's suspicion it may have been botched so i'm trying an otc treatment method. at least i haven't thrown up yet today (still early here) though i feel so empty and tired, still so sick and stressed. another dr thought maybe MS as it matches perfectly except for how young i was when i started showing symptoms. Idk. Of course, there's also the terror that the more i'm exposed to these things the more permanent damage i'll have. it's horrifying to think of how my body and mind are being eaten alive by this situation. i'm in so much pain.

i feel like even if the otc idea works i'm just so tired of this. people are trying and i'm thankful for them but it's gone so long with so much going wrong i feel liek there's nothing they can do. every tiny thing sends me panicking now. i'm a raw nerve of misery at this point. Even the clicking of my keyboard makes me want to burst into tears.

I tried finding the arteries in my neck and i thought i almost got it but i didn't quite passout and i haven't gotten that close again since. i've always had a hard time finding my pulse, i'd find it and then it'd disappear, maybe because of my POTS? someone explained it once but i can't remember. i don't have much strength in my hands. i'm wondering about the night-night method, wondering too if sleeping pills could make it or asphyxiation with a bag more effective/peaceful. i don't have tape so that's a concern, wouldn't want things coming loose. I don't have access to much being poor and stuck in my room. I'm so unbearably tired and stressed. I've been screaming for help for so long and the world just keeps playing with me like a cat plays with its food. i don't wanna play anymore, i just want peace.
I cannot express how much this resonates with me. I am reaching out to you in the PMs. Perhaps we can support each other. The pain is a creature that follows me like a ghost. I know it's there but no one can see it but me. The loneliness is its own beast. I am in agony. I beg people to help me understand the nitrogen method but my brain won't work. Not that I could drag a tank in now. I just want to go. Of course my stomach is too bad for SN. If I share this with others I get a too bad what a shame. I have no more faith no more hope and yet I fear hanging as much as I fear the pain getting worse. God is cruel if he even exists. I have lost everything. I am trapped too. My skin hurts my anxiety is an actual pain. I empathize. I hope we can connect.
 
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HD72

HD72

Humpty Dumpty had a great fall
Sep 10, 2023
294
thanks, it is a cruel world. i feel like if they don't want us to live they should at least give us the option to die but they don't want us to have either only to suffe
What are your symptoms? Maybe I can help. Not a doctor but did go to medical school...
that is so kind of u to help her. So many of us get left behind. My dr told me how sad it was I was sick and he really hoped I didn't kill myself because I was a nice girl. Oh. He did tell me to have a nice day.🙄
 
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en-bat-y

en-bat-y

Member
Nov 4, 2023
22
yea lot of people say they hope we'll be ok but msot won't/can't do anything so it can feel pretty hollow :(
 
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DEATH IS FREEDOM

DEATH IS FREEDOM

Death is the solution to unsolvable problems.
Sep 13, 2023
607
Where I live, wheelchair bound people have it way too good: they receive disability benefits and are assisted by personal assistant at the taxpayers´ expense and the country´s citizens accept them. However, disabled people in wheelchair can´t live in nature. The unemployed and people on sick leave have it much worse where I live: many of them become without income and homeless. Unemployment is not accepted even though the cause of unemployment is overpopulation but most people are too stupid to understand this. Instead, the state encourages people to have children.
 
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en-bat-y

en-bat-y

Member
Nov 4, 2023
22
Well, amazingly, i've gotten moved to an apartment, the meds are helping but it's still a bumpy road with some things here. Still. i'm much happier here and actually may be looking at a real relationship with my roommate, idk yet but i've never really been into anyone before (i guess i went from apothisexual to demi). I still owe money and have alot to work on with health and things but i already feel alot better. So i might still someday hit a point that i'm ready to call it quits but right now i want to see what this new place has for me because it looks promising for once ^.^
 
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