Venting New here. My story of chronic illness and mental illness.

[succor]

Hey everyone. I've been lurking for a while and finally decided to work up the courage to make an account and share my story. I think I'm just desperate for some sort of connection or compassion, which sounds so horrible and makes me feel incredibly selfish because the support system I have in "real life" is full of wonderful people. I just can't talk to any of them about the details of my depression and my suicidal thoughts because I don't want to hurt them further than I already have just by being burdensome in their lives.

My life has been pretty hard but not unbearable. I lived an incredibly privileged life in some ways and not so much in others. My parents were emotionally distant and abusive growing up, but always made sure I was fed and never wanting for clothes or toys or anything like that, so financially and shelter-wise I was safe though our relationship wasn't good. It's gotten better as I got older and now they're more supportive than they ever have been, despite us still not seeing eye to eye on a lot of things. I would be doing them a disservice to deny that they have improved in a lot of ways. The friends I have now are great and patient. My circle is small but good, which is a relief considering my tumultuous friendships leading up to this point that were filled with controlling and manipulative people. That's neither here nor there, though.

I've dealt with depression my entire life. I remember telling my mom when I was a child that I wished I was never born on multiple occassions. Then I was in a horrible car accident that forced me to live in the hospital and then a rehabilitation center for around a year and left me with permanent nerve and brain damage. My memory never fully recovered. I have neurological problems now, including brain fog, chronic migraines(2-4 migraines a week, at least), nerve pain/tingling/numbness in my limbs, spine damage, sciatic pain, etc. On top of that, I've had stomach/digestice problems since I was a child and was always told that it was in my head (spoiler alert: it wasn't). I was able to work through this and deal with it for most of my life and led an energetic and resilient life for years, though. I had a lot of fun. I was vibrant and creative and ambitious. I was social and artistic and adventurous.

Around 5-6 years ago my health started declining. My best friend at the time guilted me constantly for not being able to keep up with her anymore, for being bedbound from my migraines, she blamed me for not trying hard enough to get better. My stomach started acting up worse. I fought through it the best I could. I ended that friendship after years of abuse and moved away with the love of my life to be nearer to the circle of friends I have now. And then things were pretty good for a few more years.

This last year has been bar none the worst year of my life. I've been sick for most of my life, yes, but it wasn't until recently that some of those conditions have been diagnosed and I've been able to name my demons. I was diagnosed by a geneticist with Ehlers Danlos Syndrome and Postural Orthostatic Tachycardia. I can deal with those. I can tolerate those. But it kept getting worse and worse and in August of 2019 I got food poisoning, which apparently triggered something in my body and threw everything out of whack. Now it is unbearable. In a span of 3 months I lost over 70 lbs and ws unable to eat more than 100-200 calories a day. I was hospitalized several times with no results or answers until early this year right before quarantine started. Diagnosed with autoimmune hepatitis after becoming severely jaundiced. Forced to give up all of my medications (including my antidepressants) to try to give my liver time to stabilize again, put on high dose steroids and immunosuppressants to try to stop my liver from destroying itself more. They said I would go into remission soon. It's been 7 months of that. The side effects of the steroids (prednisone) are horrible and I feel like a husk of the person I was. I still feel sick and can barely tolerate food. Now I have rashes and my limbs are swelling and they think I have another autoimmune disease on top of everything else but they can't figure out what it is. They thought maybe lupus but I tested negative. Now they're thinking maybe Crohns but the tests are all inconclusive. My stomach is constantly killing me. My joints are all swollen and in so much pain. The rashes are getting worse. I have severe brain fog, worse than it's ever been. All of this on top of the conditions I already have.

I spend every day just mindlessly trying to pass time until my next doctor's visit, but all tests are coming back inconclusive. I force feed myself just enough to not starve because eating still makes me feel sick and causes a lot of pain. I have zero energy. My partner has to take care of the house, the yard, the pets, and me because I'm bedridden 95% of the day. He says he doesn't mind and loves me and wants to take care of me but he's also working full time to support us because I had to stop working last year and disability hasn't determined whether or not I get benefits yet. The guilt of what I'm putting him through is killing me. The pain and sickness I feel every day is killing me. My unreliability when it comes to socializing with my friends is killing me. I feel like a burden to everyone I have any interaction with. All I do is take take take and I'm not able to give anything of value back. My parents are financially supporting me while I fight for disability. So my parents and my partner are all giving me money just so I can what, lay here and zone out every day? Every doctor I see tells me I'm too young for this and I agree. I'm not even 30 yet. I used to be so vibrant and beautiful and full of life and light and love and now I am empty, bloated, twisted inside, miserable. The hope and ambitions and dreams I once had are now gone.

Yesterday was my birthday and I spent it like I spend every other day of my life. I've never wanted to die so badly in my entire life, and I've always struggled with mental health issues (manic depressive, OCD, transgender dysphoria). I don't see the purpose of wasting so much money just to keep me alive when I contribute nothing financially, emotionally, socially, etc. Every moment of my life is filled with pain and guilt. I've been planning to get my affairs in order for a while and figure out how I can make my eventual passing as easy as it can be of a transition for my partner and my parents and my friends but I know it's going to hurt them regardless. Still, I can at least try to cushion some of the blow. Practically speaking, the benefit of CTB outweighs me staying.

At this point, it feels like CTB is the kindest, most compassionate and morally responsible thing I could do for myself and everyone around me.

I could never tell any of them this, though. It would break their hearts. They tell me I can come to them with anything and they're here for me but I know it hurts them. They have their own struggles. I don't want to bring more stress into their lives than I already do. I think I'll gradually and slowly distance myself and get my affairs in order. It's difficult to plan though, because due to quarantine my partner works from home now and checks on me often. I don't know when or how I'm supposed to CTB without being caught, but that's neither here nor there. I'll figure it out eventually.

Sorry for the wall of text. Really, I'm very privileged to have such kind people in my life and incredibly selfish for still feeling lonely enough to have to do this. I can't take it anymore, though. People always tell me I'm so strong for surviving through all the medical bullshit I have, but I don't want to be strong anymore. I want to be done. I want rest. I dont want to be in pain anymore. I don't want this guilt anymore.

 

[lost guy]

I'm sorry you have to go through your mental and physical struggles. It sounds like there is a valid purpose for you to want to give up.

Much like you, I have a fair amount of caring people around me. But it is impossible to completely open up to them with my desire to ctb.

I lurked here for a few months before I started engaging in conversations. As you can see, there is a lot of people struggling with relatively the same feelings and they can also be very supportive and comforting.

Hopefully you feel a bit better by telling your story. I know it helped me in the slightest way to explain my situation.

Thank you for sharing your story and I hope you can get some relief and figure out which direction you want to go.

 

[DoNotLet2]

Best internet hugs for you!
That really sucks when somebody this young gets this sick...
Don't push yourself, give yourself time to prepare. You don't have to die soon. I'm sure this community will provide you with much information. Maybe it will turn out for the good and there will be some cure to alleviate the symptoms? I don't know but I hope the best for you.

 

[violetsaturn]

Hey everyone. I've been lurking for a while and finally decided to work up the courage to make an account and share my story. I think I'm just desperate for some sort of connection or compassion, which sounds so horrible and makes me feel incredibly selfish because the support system I have in "real life" is full of wonderful people. I just can't talk to any of them about the details of my depression and my suicidal thoughts because I don't want to hurt them further than I already have just by being burdensome in their lives.

My life has been pretty hard but not unbearable. I lived an incredibly privileged life in some ways and not so much in others. My parents were emotionally distant and abusive growing up, but always made sure I was fed and never wanting for clothes or toys or anything like that, so financially and shelter-wise I was safe though our relationship wasn't good. It's gotten better as I got older and now they're more supportive than they ever have been, despite us still not seeing eye to eye on a lot of things. I would be doing them a disservice to deny that they have improved in a lot of ways. The friends I have now are great and patient. My circle is small but good, which is a relief considering my tumultuous friendships leading up to this point that were filled with controlling and manipulative people. That's neither here nor there, though.

I've dealt with depression my entire life. I remember telling my mom when I was a child that I wished I was never born on multiple occassions. Then I was in a horrible car accident that forced me to live in the hospital and then a rehabilitation center for around a year and left me with permanent nerve and brain damage. My memory never fully recovered. I have neurological problems now, including brain fog, chronic migraines(2-4 migraines a week, at least), nerve pain/tingling/numbness in my limbs, spine damage, sciatic pain, etc. On top of that, I've had stomach/digestice problems since I was a child and was always told that it was in my head (spoiler alert: it wasn't). I was able to work through this and deal with it for most of my life and led an energetic and resilient life for years, though. I had a lot of fun. I was vibrant and creative and ambitious. I was social and artistic and adventurous.

Around 5-6 years ago my health started declining. My best friend at the time guilted me constantly for not being able to keep up with her anymore, for being bedbound from my migraines, she blamed me for not trying hard enough to get better. My stomach started acting up worse. I fought through it the best I could. I ended that friendship after years of abuse and moved away with the love of my life to be nearer to the circle of friends I have now. And then things were pretty good for a few more years.

This last year has been bar none the worst year of my life. I've been sick for most of my life, yes, but it wasn't until recently that some of those conditions have been diagnosed and I've been able to name my demons. I was diagnosed by a geneticist with Ehlers Danlos Syndrome and Postural Orthostatic Tachycardia. I can deal with those. I can tolerate those. But it kept getting worse and worse and in August of 2019 I got food poisoning, which apparently triggered something in my body and threw everything out of whack. Now it is unbearable. In a span of 3 months I lost over 70 lbs and ws unable to eat more than 100-200 calories a day. I was hospitalized several times with no results or answers until early this year right before quarantine started. Diagnosed with autoimmune hepatitis after becoming severely jaundiced. Forced to give up all of my medications (including my antidepressants) to try to give my liver time to stabilize again, put on high dose steroids and immunosuppressants to try to stop my liver from destroying itself more. They said I would go into remission soon. It's been 7 months of that. The side effects of the steroids (prednisone) are horrible and I feel like a husk of the person I was. I still feel sick and can barely tolerate food. Now I have rashes and my limbs are swelling and they think I have another autoimmune disease on top of everything else but they can't figure out what it is. They thought maybe lupus but I tested negative. Now they're thinking maybe Crohns but the tests are all inconclusive. My stomach is constantly killing me. My joints are all swollen and in so much pain. The rashes are getting worse. I have severe brain fog, worse than it's ever been. All of this on top of the conditions I already have.

I spend every day just mindlessly trying to pass time until my next doctor's visit, but all tests are coming back inconclusive. I force feed myself just enough to not starve because eating still makes me feel sick and causes a lot of pain. I have zero energy. My partner has to take care of the house, the yard, the pets, and me because I'm bedridden 95% of the day. He says he doesn't mind and loves me and wants to take care of me but he's also working full time to support us because I had to stop working last year and disability hasn't determined whether or not I get benefits yet. The guilt of what I'm putting him through is killing me. The pain and sickness I feel every day is killing me. My unreliability when it comes to socializing with my friends is killing me. I feel like a burden to everyone I have any interaction with. All I do is take take take and I'm not able to give anything of value back. My parents are financially supporting me while I fight for disability. So my parents and my partner are all giving me money just so I can what, lay here and zone out every day? Every doctor I see tells me I'm too young for this and I agree. I'm not even 30 yet. I used to be so vibrant and beautiful and full of life and light and love and now I am empty, bloated, twisted inside, miserable. The hope and ambitions and dreams I once had are now gone.

Yesterday was my birthday and I spent it like I spend every other day of my life. I've never wanted to die so badly in my entire life, and I've always struggled with mental health issues (manic depressive, OCD, transgender dysphoria). I don't see the purpose of wasting so much money just to keep me alive when I contribute nothing financially, emotionally, socially, etc. Every moment of my life is filled with pain and guilt. I've been planning to get my affairs in order for a while and figure out how I can make my eventual passing as easy as it can be of a transition for my partner and my parents and my friends but I know it's going to hurt them regardless. Still, I can at least try to cushion some of the blow. Practically speaking, the benefit of CTB outweighs me staying.

At this point, it feels like CTB is the kindest, most compassionate and morally responsible thing I could do for myself and everyone around me.

I could never tell any of them this, though. It would break their hearts. They tell me I can come to them with anything and they're here for me but I know it hurts them. They have their own struggles. I don't want to bring more stress into their lives than I already do. I think I'll gradually and slowly distance myself and get my affairs in order. It's difficult to plan though, because due to quarantine my partner works from home now and checks on me often. I don't know when or how I'm supposed to CTB without being caught, but that's neither here nor there. I'll figure it out eventually.

Sorry for the wall of text. Really, I'm very privileged to have such kind people in my life and incredibly selfish for still feeling lonely enough to have to do this. I can't take it anymore, though. People always tell me I'm so strong for surviving through all the medical bullshit I have, but I don't want to be strong anymore. I want to be done. I want rest. I dont want to be in pain anymore. I don't want this guilt anymore.

Reading your post feels like reading my own thoughts. I also have been struggling with health issues for five years now and I'm only 18. I am in the same boat with doctors who tell me that they cannot find anything wrong with the hundreds of blood tests and dozens of scans I have had done. They believe I am in the autoimmune world though. It seems every year I just keep getting worse and worse. I am now at the point to where I cannot leave my apartment unless I haven't eaten for my days because I can get sick out of nowhere if I have even a little bit of food in my digestive system. One of my "undiagnosable" (according to my doctors) chronic pains is that I feel like someone has constantly got their hands inside my rib cage, trying to squeeze my lungs and organs from the inside out until they explode. I have had two years of this and I am only just now able to schedule a pain management appt since all of the doctors I have seen tell me they don't know how to fix it. My heart/chest have also recently joined the list of issues. My heart rate is way too fast and accompanied by frequent chest pain but my cardiologist cannot find a reason why, the meds for the tachycardia and chest pain have not worked either.

I was depressed long before my health started failing but that made it a million times worse. I have absolutely zero desire to live and quite frankly I think I'll end up dying at a young age regardless of if it is intentional or not. I have support from my family and friends but anyone with chronic/unsolvable issues knows that no one truly understands just how bad it is due to the fact it is often invisible to others. Sometimes I hear the doubt in the voices of my family when I tell them I just can't make it to the dinner tonight, that I'm just not well enough today, and they tell me they understand and I should get well.
I can't tell you the last time I was truly happy, not even as a kid. I've always known that life is ultimately cruel even if it bestows love and tranquillity for others. People like me understand that we will never achieve happiness. We will never be excited to wake up the next day and do life all over again.
The only reason I'm even here now is because of my belief in God. Which sounds funny, I know, since I am so pessimistic and bitter. It would be easier if I didn't believe, I would be able to end my life knowing there would be nothing next, that I would simply cease to exist, cease to think. Unfortunately, I feel in my heart that God is real and I know suicide tends to fall on the sin side of things. Why would God let us suffer? Why would he hand everything on a silver platter to some and give nothing to others? What makes someone deserve a good life? What makes them deserve a bad one?

I just want the pain, the numbness, the agony, the despair, the hopelessness, the anxiety, the bitterness, and everything else I feel to stop. I wish I could stop.

 

[lost guy]

Reading your post feels like reading my own thoughts. I also have been struggling with health issues for five years now and I'm only 18. I am in the same boat with doctors who tell me that they cannot find anything wrong with the hundreds of blood tests and dozens of scans I have had done. They believe I am in the autoimmune world though. It seems every year I just keep getting worse and worse. I am now at the point to where I cannot leave my apartment unless I haven't eaten for my days because I can get sick out of nowhere if I have even a little bit of food in my digestive system. One of my "undiagnosable" (according to my doctors) chronic pains is that I feel like someone has constantly got their hands inside my rib cage, trying to squeeze my lungs and organs from the inside out until they explode. I have had two years of this and I am only just now able to schedule a pain management appt since all of the doctors I have seen tell me they don't know how to fix it. My heart/chest have also recently joined the list of issues. My heart rate is way too fast and accompanied by frequent chest pain but my cardiologist cannot find a reason why, the meds for the tachycardia and chest pain have not worked either.

I was depressed long before my health started failing but that made it a million times worse. I have absolutely zero desire to live and quite frankly I think I'll end up dying at a young age regardless of if it is intentional or not. I have support from my family and friends but anyone with chronic/unsolvable issues knows that no one truly understands just how bad it is due to the fact it is often invisible to others. Sometimes I hear the doubt in the voices of my family when I tell them I just can't make it to the dinner tonight, that I'm just not well enough today, and they tell me they understand and I should get well.
I can't tell you the last time I was truly happy, not even as a kid. I've always known that life is ultimately cruel even if it bestows love and tranquillity for others. People like me understand that we will never achieve happiness. We will never be excited to wake up the next day and do life all over again.
The only reason I'm even here now is because of my belief in God. Which sounds funny, I know, since I am so pessimistic and bitter. It would be easier if I didn't believe, I would be able to end my life knowing there would be nothing next, that I would simply cease to exist, cease to think. Unfortunately, I feel in my heart that God is real and I know suicide tends to fall on the sin side of things. Why would God let us suffer? Why would he hand everything on a silver platter to some and give nothing to others? What makes someone deserve a good life? What makes them deserve a bad one?

I just want the pain, the numbness, the agony, the despair, the hopelessness, the anxiety, the bitterness, and everything else I feel to stop. I wish I could stop.

My belief in God is halting my suicide attempt as well.
I hope you feel better soon, even though it may be impossible.

 

[violetsaturn]

My belief in God is halting my suicide attempt as well.
I hope you feel better soon, even though it may be impossible.

Thank you. Can I ask, what's your story?

 

[succor]

I'm sorry you have to go through your mental and physical struggles. It sounds like there is a valid purpose for you to want to give up.

Much like you, I have a fair amount of caring people around me. But it is impossible to completely open up to them with my desire to ctb.

I lurked here for a few months before I started engaging in conversations. As you can see, there is a lot of people struggling with relatively the same feelings and they can also be very supportive and comforting.

Hopefully you feel a bit better by telling your story. I know it helped me in the slightest way to explain my situation.

Thank you for sharing your story and I hope you can get some relief and figure out which direction you want to go.

Thank you for your empathy. It does feel like a slight relief to finally put my pain into words without fear of people guilting me. I'll take my time in planning, I don't want this to be an impulsive sort of thing.

Best internet hugs for you!
That really sucks when somebody this young gets this sick...
Don't push yourself, give yourself time to prepare. You don't have to die soon. I'm sure this community will provide you with much information. Maybe it will turn out for the good and there will be some cure to alleviate the symptoms? I don't know but I hope the best for you.

I'm going to take my time getting things in order. If I can find some sort of relief or treatment or something that will give me some quality of life back I'll be thrilled, but I'm also not holding out hope. It's exhausting, going from appointment to appointment thinking "maybe this time something will change" and then nothing ever does. Sorry, I don't mean to be a downer about it. I do hope that I can find some relief one way or another.

Reading your post feels like reading my own thoughts. I also have been struggling with health issues for five years now and I'm only 18. I am in the same boat with doctors who tell me that they cannot find anything wrong with the hundreds of blood tests and dozens of scans I have had done. They believe I am in the autoimmune world though. It seems every year I just keep getting worse and worse. I am now at the point to where I cannot leave my apartment unless I haven't eaten for my days because I can get sick out of nowhere if I have even a little bit of food in my digestive system. One of my "undiagnosable" (according to my doctors) chronic pains is that I feel like someone has constantly got their hands inside my rib cage, trying to squeeze my lungs and organs from the inside out until they explode. I have had two years of this and I am only just now able to schedule a pain management appt since all of the doctors I have seen tell me they don't know how to fix it. My heart/chest have also recently joined the list of issues. My heart rate is way too fast and accompanied by frequent chest pain but my cardiologist cannot find a reason why, the meds for the tachycardia and chest pain have not worked either.

I was depressed long before my health started failing but that made it a million times worse. I have absolutely zero desire to live and quite frankly I think I'll end up dying at a young age regardless of if it is intentional or not. I have support from my family and friends but anyone with chronic/unsolvable issues knows that no one truly understands just how bad it is due to the fact it is often invisible to others. Sometimes I hear the doubt in the voices of my family when I tell them I just can't make it to the dinner tonight, that I'm just not well enough today, and they tell me they understand and I should get well.
I can't tell you the last time I was truly happy, not even as a kid. I've always known that life is ultimately cruel even if it bestows love and tranquillity for others. People like me understand that we will never achieve happiness. We will never be excited to wake up the next day and do life all over again.
The only reason I'm even here now is because of my belief in God. Which sounds funny, I know, since I am so pessimistic and bitter. It would be easier if I didn't believe, I would be able to end my life knowing there would be nothing next, that I would simply cease to exist, cease to think. Unfortunately, I feel in my heart that God is real and I know suicide tends to fall on the sin side of things. Why would God let us suffer? Why would he hand everything on a silver platter to some and give nothing to others? What makes someone deserve a good life? What makes them deserve a bad one?

I just want the pain, the numbness, the agony, the despair, the hopelessness, the anxiety, the bitterness, and everything else I feel to stop. I wish I could stop.

My love, I understand entirely. Especially not being able to do anything unless you haven't eaten in a long time! Any time there's food in my system I feel ill and in pain, but if I don't eat for more than 4 hours my stomach starts twisting and there's this cavernous pain I can't really describe, so it's like having to choose which arm you want to cut off- either way my stomach is going to hurt, just choose which kind/for what reason this time. I'm so sorry. We're far too young to have to suffer this the way we do. I sincerely hope that specialists find something that will give you relief from your symptoms. Have you looked into gastroparesis for your stomach issues? They used to think that was what I had because I would get full very quickly and would get sick often. I didn't end up having it, and they're still looking into why digestive system is wonky, but I know a lot of people who have gastroparesis.

 

[OpheliasFlowers]

My heart goes out to you more than you can know. I can relate to SO MANY aspects of your circumstances, there are parts of your post I could've written word for word myself, especially the digestive issues and the feeling of frustration and guilt regarding the other people in your life and missing out on so much due to your health.

I have had digestive issues since I was literally a small child, but was always told it was either "growing pains", or dismissed as me faking or being overly dramatic. Fast forward ahead and it was discovered I had stage 4 endometriosis with so much damage all inside my pelvic/abdomen and lots of endo damage on my bowel, rectum, etc -- but then they say that while that "could" be the reason for "some" of my GI issues, it wouldn't explain it all. I've struggled with chronic nausea and low weight and IBS and other rectal problems since I was around 12 as well, and then 17 years ago I woke up one morning -- truly, went to bed with not too bad a stomach than usual and woke up the next day with this intense boring, gnawing, 'hollow' sensation that NOTHING eases, nor can I pinpoint anything that brings it on or causes it. I've seen many GIs about this, had various testing -- no answers. Your description of feeling a "cavernous" pain in your belly hit home for me because that quite well also describes my pain. THEN in June 2019, I discovered I'd contracted a c. difficile infection which was the last thing I needed as, due to my (as yet undiagnosed) stomach pain and other GI issues, I already was severely underweight and struggling every day to eat enough to just survive. But that c. diff infection made everything 1000 times worse and was so incredibly painful and miserable and I live in fear every day that it'll come back, as apparently it never is truly 'cured', just goes into remission. Anway, right now I am 5'8" and weigh around 93 lbs so I look horrible and feel horrible. So I REALLY REALLY relate to and understand what you're going through with eating, being so tired and weak, and just all that GI stuff. I am SO SORRY you are going through all that you are. And I am a good 20 years older than you so I feel for you because you should be enjoying life right now, experiencing all the good things life can offer...so I totally understand how you are feeling about that because that's how I felt at your age too.

Well I didn't mean to ramble on so much about my own health issues but wanted you to know how similar my situation (and symptoms) are to yours, and I am feeling all those same emotions as you...so if you ever need anyone to talk to, vent to, share ideas about nutrition dense foods and eating (god. eating should NOT be a struggle like it is for people like us. food should be enjoyed, not be something you suffer through because you have to get X calories in a day and then often just feel sicker after you eat. I wish I had a penny for every gallon of Ensure I've had over the last 17 years...) please reach out to me.

Sending you support and a hug, hope that's ok. I'm sorry you're going through all that you are but glad you found this site; I know you will find much support, comfort and understanding here. There are many beautiful, kind souls on this forum.

 

[Goodbye710]

I'm sorry to hear all this. Happy Birthday!!!! as well.

It sounds like you have a very good support system. I would bet you don't feel like a burden one bit and they may even enjoy being there for you. I wouldn't recommend to slowly pull away as they will then be left with more heartache what they could have done better or what they did wrong. It would be better to just write a note that they would read on your passing instead. How much you love all of them.

In the US it's mostly legal but I personally have to take a specific brand of kratom to help me with my problems several times a day. It has a small amount of opioids in it but I don't care considering the alternative. It's not legal in all areas and I don't care if it's a little addictive because caffeine is addictive just as much anyway I figure. But I'm not sure if it will agree with your stomach.

Anyway, I'm sorry to hear what you're going through.

 

[violetsaturn]

Thank you for your empathy. It does feel like a slight relief to finally put my pain into words without fear of people guilting me. I'll take my time in planning, I don't want this to be an impulsive sort of thing.




I'm going to take my time getting things in order. If I can find some sort of relief or treatment or something that will give me some quality of life back I'll be thrilled, but I'm also not holding out hope. It's exhausting, going from appointment to appointment thinking "maybe this time something will change" and then nothing ever does. Sorry, I don't mean to be a downer about it. I do hope that I can find some relief one way or another.




My love, I understand entirely. Especially not being able to do anything unless you haven't eaten in a long time! Any time there's food in my system I feel ill and in pain, but if I don't eat for more than 4 hours my stomach starts twisting and there's this cavernous pain I can't really describe, so it's like having to choose which arm you want to cut off- either way my stomach is going to hurt, just choose which kind/for what reason this time. I'm so sorry. We're far too young to have to suffer this the way we do. I sincerely hope that specialists find something that will give you relief from your symptoms. Have you looked into gastroparesis for your stomach issues? They used to think that was what I had because I would get full very quickly and would get sick often. I didn't end up having it, and they're still looking into why digestive system is wonky, but I know a lot of people who have gastroparesis.

You and all the other people who have posted in this thread are making me feel so much less alone! You don't realize how much it meant to me to read that you understand entirely. And yes, my gastroenterologist checked for just about everything including gastroparesis. He did a colonoscopy and an endoscopy and found nothing except chronic inflammation in my esophagus. He actually stopped seeing me as a patient because of it. He said there was nothing else he could do and that I would have to be referred to a gastroenterologist at a bigger hospital in another city and/or state. In my experience this is how it goes with every specialist. If they can't immediately figure out what's wrong with someone they just claim there's nothing they can do and send you away. All because of their egos, I presume.

 

[succor]

My heart goes out to you more than you can know. I can relate to SO MANY aspects of your circumstances, there are parts of your post I could've written word for word myself, especially the digestive issues and the feeling of frustration and guilt regarding the other people in your life and missing out on so much due to your health.

I have had digestive issues since I was literally a small child, but was always told it was either "growing pains", or dismissed as me faking or being overly dramatic. Fast forward ahead and it was discovered I had stage 4 endometriosis with so much damage all inside my pelvic/abdomen and lots of endo damage on my bowel, rectum, etc -- but then they say that while that "could" be the reason for "some" of my GI issues, it wouldn't explain it all. I've struggled with chronic nausea and low weight and IBS and other rectal problems since I was around 12 as well, and then 17 years ago I woke up one morning -- truly, went to bed with not too bad a stomach than usual and woke up the next day with this intense boring, gnawing, 'hollow' sensation that NOTHING eases, nor can I pinpoint anything that brings it on or causes it. I've seen many GIs about this, had various testing -- no answers. Your description of feeling a "cavernous" pain in your belly hit home for me because that quite well also describes my pain. THEN in June 2019, I discovered I'd contracted a c. difficile infection which was the last thing I needed as, due to my (as yet undiagnosed) stomach pain and other GI issues, I already was severely underweight and struggling every day to eat enough to just survive. But that c. diff infection made everything 1000 times worse and was so incredibly painful and miserable and I live in fear every day that it'll come back, as apparently it never is truly 'cured', just goes into remission. Anway, right now I am 5'8" and weigh around 93 lbs so I look horrible and feel horrible. So I REALLY REALLY relate to and understand what you're going through with eating, being so tired and weak, and just all that GI stuff. I am SO SORRY you are going through all that you are. And I am a good 20 years older than you so I feel for you because you should be enjoying life right now, experiencing all the good things life can offer...so I totally understand how you are feeling about that because that's how I felt at your age too.

Well I didn't mean to ramble on so much about my own health issues but wanted you to know how similar my situation (and symptoms) are to yours, and I am feeling all those same emotions as you...so if you ever need anyone to talk to, vent to, share ideas about nutrition dense foods and eating (god. eating should NOT be a struggle like it is for people like us. food should be enjoyed, not be something you suffer through because you have to get X calories in a day and then often just feel sicker after you eat. I wish I had a penny for every gallon of Ensure I've had over the last 17 years...) please reach out to me.

Sending you support and a hug, hope that's ok. I'm sorry you're going through all that you are but glad you found this site; I know you will find much support, comfort and understanding here. There are many beautiful, kind souls on this forum.

Oh my goodness, I understand this entirely! Please don't apologize for sharing your story, the solidarity is so comforting for me. Thank you so much. What's maddening is that I'm not losing weight anymore. I've been force feeding myself so that I stop dropping weight even though it's painful, but I've always had difficulty losing weight. But now, since I'm not dropping weight like I was a few months ago, I feel like my doctors aren't taking me as seriously anymore. It's terrible. I'm eating JUST enough to not make myself sicker, but since I'm not shedding the pounds it's apparently not as serious anymore. But I don't want to go back to wasting away...

I'm sorry to hear all this. Happy Birthday!!!! as well.

It sounds like you have a very good support system. I would bet you don't feel like a burden one bit and they may even enjoy being there for you. I wouldn't recommend to slowly pull away as they will then be left with more heartache what they could have done better or what they did wrong. It would be better to just write a note that they would read on your passing instead. How much you love all of them.

In the US it's mostly legal but I personally have to take a specific brand of kratom to help me with my problems several times a day. It has a small amount of opioids in it but I don't care considering the alternative. It's not legal in all areas and I don't care if it's a little addictive because caffeine is addictive just as much anyway I figure. But I'm not sure if it will agree with your stomach.

Anyway, I'm sorry to hear what you're going through.

Thank you for your kind words. I'll look into what you mentioned. Unfortunately, because of my aggressive liver disease, I'm not able to take most medications right now. I don't even have any pain management for my joint issues/arthritis/skeletal damage because of my liver. :(

You and all the other people who have posted in this thread are making me feel so much less alone! You don't realize how much it meant to me to read that you understand entirely. And yes, my gastroenterologist checked for just about everything including gastroparesis. He did a colonoscopy and an endoscopy and found nothing except chronic inflammation in my esophagus. He actually stopped seeing me as a patient because of it. He said there was nothing else he could do and that I would have to be referred to a gastroenterologist at a bigger hospital in another city and/or state. In my experience this is how it goes with every specialist. If they can't immediately figure out what's wrong with someone they just claim there's nothing they can do and send you away. All because of their egos, I presume.

OMG! I understand this entirely! I was told so many times that I had to see another doctor at a larger "teaching hospital" because the hospitals I went to "weren't equipped" to test for everything I needed. It's been awful and it makes you feel so hopeless and helpless when you keep getting pawned off on doctor after doctor! And then when you change doctors so often, at THEIR request, people get suspicious that you're "doctor shopping"! It's absolutely maddening.

 

[violetsaturn]

Oh my goodness, I understand this entirely! Please don't apologize for sharing your story, the solidarity is so comforting for me. Thank you so much. What's maddening is that I'm not losing weight anymore. I've been force feeding myself so that I stop dropping weight even though it's painful, but I've always had difficulty losing weight. But now, since I'm not dropping weight like I was a few months ago, I feel like my doctors aren't taking me as seriously anymore. It's terrible. I'm eating JUST enough to not make myself sicker, but since I'm not shedding the pounds it's apparently not as serious anymore. But I don't want to go back to wasting away...




Thank you for your kind words. I'll look into what you mentioned. Unfortunately, because of my aggressive liver disease, I'm not able to take most medications right now. I don't even have any pain management for my joint issues/arthritis/skeletal damage because of my liver. :(




OMG! I understand this entirely! I was told so many times that I had to see another doctor at a larger "teaching hospital" because the hospitals I went to "weren't equipped" to test for everything I needed. It's been awful and it makes you feel so hopeless and helpless when you keep getting pawned off on doctor after doctor! And then when you change doctors so often, at THEIR request, people get suspicious that you're "doctor shopping"! It's absolutely maddening.

Exactly!!! And said teaching hospitals will probably never look at your referral until a year later or more. The healthcare system is so fucked up. They're really just trying their best to make sure we're kicked while we're down.

 

[succor]

Exactly!!! And said teaching hospitals will probably never look at your referral until a year later or more. The healthcare system is so fucked up. They're really just trying their best to make sure we're kicked while we're down.

TRULY. Sorry I haven't replied in a while, it's been a few really bad pain days that left me down for the count. I hope so hard that you find some sort of relief from all of this.