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I didn't lead anything remotely resembling a normal life. I had no relationships, very very few friends...from 17-25, really didn't spend time with ANYone except my immediate family, went out to go to the psychiatrist and occasionally woudl venture to the store or something with my grandmother. I lay in bed mostly in the dark and watched tv. I tried college for 2 months - FORCED myself - and freaked out. Nearly every day I'd be in a total state of hysteria, on the phone to my grandmother from some pay phone on campus, unable to sit in any classes that had fleurescent lighting - called the psychiatrist from the Student Lounge and told him I needed to just be put into a hospital. I took every med I coudl try, and some days I'd feel almost hopeful for an hour or so. Then back into the horror show. Couldn't sleep wtihout a transitor radio pressed up against my ear and my grandmother in the room - even then I'd wake up, or "startle awake" several times a night, sit up in bed and say "I can't breathe!" or "I don't feel like I'm here...help me, help me.." Eventually, I'd get so exhausted I'd sleep a bit.

Finally FORCED myself out of that darkness, (when it became totally clear it was only going to get WORSE the more I hid from the world) and forced myself back into a state college part time...again, every day was "will I make it?" or "won't I?" and again, the calling several times a day from pay phones, standing alone in bathrooms trying to convince myself i could go back out and not run stark raving insane across campus....every hour was a month, and every day was a year.

I had DP/Dr nearly constantly for a year or two, then every day, but not every minute - I was constantly anxious and obsessvie and had secret delusions - scary thoughts that I reallY DID invent the world, etc..those were with me 24/7. I never knew if I was awake or if I was real....it was like living inside teh Matrix, or the Truman SHow - watching every minute for the fabric of Reality to unweave itself and show the TRUTH (which was that nothing was real)

When I was doing BETTER (pause for laughter) I came to NY with a dear friend and got dozens of different part time jobs - sometimes quitting after a week, sometimes after several months (some of the jobs had pretty low standards, lol). I'd leave mid-shift, stay out for days on end, etc.

I SOMEtimes went out with friends (my good friend and roommate knew I "was anxious" - and basically everyone thought i was a tad "odd" lol...they liked me, but I was the "cool, crazy girl" I suspect)

I did HORRIBLE jobs..things I had to do because I couldn't do a normal job - I didn't even have any skills...couldn't type well, knew nothing about computers (yes, back in the days before fire, lol)...I lived poor and scared and kept dreaming/hoping ONE day something wonderful might save me - expected my best friend to become a famous movie star (she was an actress in Ny, not totally absurd fantasy) and I figrued she would support me when my mind eventually broke.

Well, she never got famous and NObody ever lent me a dime, lol....

I lived day to day ONLY because I was too scared to kill myself.

I limped.

That's how i lived. I limped.

Didn't start getting better (in any real version of that word) until a year or more into therapy (the thearpy that worked, the one with the doctor I liked, who relaly formed a connection wtih me)...unearthing all the stuff, all the thougths, all the feelings, etc..after a lifetime of living alone in my head slowly made the ice thaw - and aruond the ice was the Symptom-Lever appearantly.

All the best,
trust me - if I can get well, so can you
 

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It's now 10 years since I first felt DP/DR.

Even if there is only 2 minutes of clarity and hapiness in each day, I will suffer the thousands of other minutes just to taste those two.
The basic function of any human is to survive, and that's what we're doing.
Imagine, some people go on for years in hospital beds dying more each day and they continue to fight.

And things always gets better of course, over 10 years I've had some periods that I felt almost DP free for a few months, somtimes it was milder, somtimes I wasnt able to walk, thats when I go to sleep.
 
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Hi Maria

DP/DR has been a part of my life for almost forty years. But it was only for the first couple of years that it was extreme and frightening. I was in the state mental hospital at that time. My aunt found out I was there and came to visit me. After seeing the conditions I was living in she took me out and put me in a private hospital for a brief stay. Then after a short stay in the private hospital I was relesed and went to live with her for a couple of months. I was still too "ill" to work or anything and would spend most of the time curled up in an over stuffed chair staring at the patterns on the rug. She told me a few years ago that I must have really been "sick" to simply sit and stare like that everyday. It was decided that i should go back into the state hospital as she couldn't afford the private one again.

I had been taking stelazine and Valium for over a year then and after spending a few months on the locked ward I was transferred to an open ward and they took me off of all medication. Without the meds I quickly began to get better. And in a couple of months I was released as being non psychotic.

I was frightened to leave the ward at first and gradually would go further away every day. I began getting a pass to leave the hospital grounds to walk into town nearby and then I got a pass to go home to my mother for a weekend and after a few weekend visits I left the hospital and haven't been back in almost forty years.

I still have "attacks" of DP/DR now and then and I can feel it always waiting in the background so as to catch me unawares, but I have learned to exist with its presence always hovering nearby.

As I have mentioned elsewhere I believe in my case the extreme DP I suffered from originally was the result of a nervous breakdown due in large part to a developmental personality disorder and to high stress of a life threatening nature coupled with the effects of anti- psychotic midication. I no longer have that level of stress nor do I take anti psychotic meds. I take small to moderate dosages of Xanax daily for many years now and that seems to be all I need to stay fairly comfortable. Along the way I pushed myself to try and do normal things even while terrified with DP. it has been many years since DP/DR has overwhelmed me like it once did. Although it does make its presence felt still on occasion, but it doesn't last very long and is much milder than the original bout.

I have been recieving SSI psychiatric disability for thirty years other than that I feel pretty normal I guess. I could work some if they would change the rules and be more flexible . Sometimes i work under the table for a few hours here and there. I just don't feel able work full time and i would hate to loose my medical coverage especially at my age.

best of luck to you.

john
 

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Man there are as many stories as there are each of us. How everyone makes it is .... unique. 8)

For details on my experience of essentially life long anxiety and chronic DP/DR for about 30 years see my website:

http://www.dreamchild.net

I'm now 46.

I'll say that my illness has evolved over the years, starting in childhood. There are so many factors.

I had a very unsupportive, verbally/mentally abusive mother and an absent father which made matters much worse. No siblings, no real extended family.

I was thinking about this again the other day, I had a childhood totally lacking in love and emotional support, so that affected me deeply, and psychologically, but I see DP, anxiety, depression as an illness I had a predisposition to. And of course the psychology interacts with the illness... there is really no separating the two -- they act upon each other.

As a young girl I was more "unhappy", "anxious", "felt different" but also could bring on episodes of DP/DR at will that weren't scary. But I was constantly anxious and sad.

When DP/DR struck me headon around age 12 it was Hell, but because my mother was a psychiatrist and made fun of the whole thing and refused to let me see anyone, I sort of "incorporated" it into my life.

I also always saw it as an illness (though I have been through the Nature/Nurture debate a LOT over the years.) I also know how much I hate my mother for what she did. Her cruelty to everyone.

I have had non-stop DP 24/7 for about 30 years w/no let up -- not a moment save some "clear spaces" I don't have anymore, but the severity can change, and is always worsened by stress.

And the question, how do you keep going? For me, as a young girl I wanted to get away from my mother. I knew what I wanted to do with my life. I fought hard for it. I was also supported by being in a wealthier family -- private school, music camp, travel. (My mother was a snob -- THAT was fortunate. We had to keep up a "together, upper class facade". I had a rich life -- culturally, education-wise, travel, etc.) All of that saved me. Literally. I've said time and time again, my private school which stressed always achieving one's best, my music camp, were my family, and gave me some sense of self-esteem. University as well. I have a BA and an MA.

I lived for my music/theatre, my love of film, crushes on boys and teachers. I saw life as wonderful, save the mess I was.

I've really never stopped thinking that way, though I planned to check out at age 30. This was after years of therapy and meds that weren't helping.... remember this is back in the 1970s. Psychiatry has changed radically over the years.

What helped?

1. Meds
2. Therapy
3. "Coming out of the closet" -- not being afraid to say I have problems -- you find who your real friends are
4. Becoming involved in mental health advocacy
5. Time
6. Love, sex, intimacy when I can find it.

Over time I have been able to "adjust" to living this way, however, I'm taking another step to trying to go back to work, etc. Like orlando says, the disability system is a mess as I fear not being able to work full time, and if you work a certain number of hours you lose disability. I'm not on disability but have been eligible. Have never been on it.

I think how everyone deals here has to do with a POV about life and also with the severity of the DP/DR. For some the severity and chronicity is unbearable. For others it fluctuates to "bearable" -- though I will NEVER accept it as normal. Also some people have these times of "remission" or it actually is cured. Each case is different.

Babbling on.

I'm making a big life move this month -- moving to my uni town and becoming heavily involved in Mental Health Advocacy. Also trying to get back to involvement in my music, and trying, trying, trying to write a book that is on hold now. About my life. And an article about my friend's suicide.

My life in so many ways has appeared "normal", and better than most. I've been very lucky that I grew up when and where I did. But nothing substitutes for a loving supportive family, and health -- mental and otherwise.

Music, the company of people I love, many interests in many things, moments of joy, good days, the best things of life have kept me going though I have wanted to give up many times.

A friend of mine (of 25 years) recently took her own life. Since that happened I think LESS about taking my life, simply because I see how much she is missing. But she was seriously ill. That is always an option for me, I hate to say, but I keep plugging along.

I HATE PACKING 8)
L,
D 8)
Bottom line, as I see this, this is a seriuos illness we deal with as best we can. For some there is a complete return to reality, for others, it is sporadic, for me over time I have learned more how to deal with this. Coping skills in group therapy recently have been VERY beneficial. Being with other mentally ill people, no matter what is wrong with them, is inspiring as wel as comforting.

I love learning something new every day. I truly love life, under all of this crap.

One day at a time.
 

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PS, I always have a PS, LOL.

As I've gotten older, found I'm not alone (this website, etc.), this has become easier to deal with. I haven't had a really bad increase in my DP now for about 2 months. Why I don't know, and I'm not going to ask.

You young folks may not want to hear this, but getting older gives you many new perspectives on life. You find what is REALLY important. You find you don't have to prove your own worth, be like anyone else. Sounds corning, but the wisdom one gains over the years is extremely beneficial, especially if you NEVER stop learning. NEVER.

Never stop trying to take in new things. Find things you love to do, no matter what they are. FInd people who make you feel comfortable whom you love, who love you.

Hang in there.

I really feel time and understanding has helped me a great deal, but so have my meds and therapy and....

Hope. That stupid little thing in the back of my mind, saying, give it one more day. Try, try again.

As in the title of an old book by Arthur Ashe (tennis player) who died of AIDS (years back, from a blood transfusion) we have "Days of Grace."

I see every day now as a day of Grace. One more chance to find a fragment of joy.

Doesn't mean to say I am frightened often, lonely, angry, etc. But those feelings are real, legitimate.

Life is worth hanging in for.

Best,
D
 
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Sometimes it just takes a good amount of time to find the right treatments for your illness...some people may be able to hit the jackpot and find a good treatment very soon while others may takes years to find it. The important thing is that you are showing care for yourself and your life by going to the hospital and seeking out help. the one thing i observed with the people i met in the hospital is that they had very little care for themselves. People with dp/dr seem to value life greatly and that is one things that separates this illness from others..It took me the better part of a decade to get stable from a case of schizophrenia, probably because the resources werent as good at the time. With you it will be different because there are plenty of resources these days to help you. Just hang in there and realize that it doesnt always go years.
 

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Janine, Dreamer, Orlando, Supergrass,
Those were truly inspirational. I've been at home this past week (Mother's day, my b-day) and I havent had access to the computer. This is a beautiful thread. Very eloquent, Dreamer, and Janine, very "adventurous" tale. The young, troubled woman who takes on the big apple with a young talented actress roommate. I'm sure there's a TV pilot in there somewhere....Anyways, it was great reading those guys. I'm trying to figure out the direction for my life now. I've been pretty lonely in Pittsburgh, and school- scratch that- NOTHING has been working out this year. I'm still being represented for acting, but I havent heard back from the past three auditions. I just turned 24, and my family still treats me like a pariah. They're softening up a little lately, but I just feel so lonely and empty. I think I'd like to pursue an outdoor job for the summer and then transfer to the Franciscan University of Steubenville for the fall semester. I've put a bunch of applications in my area for outdoor things - trail clearer at our local state park, gardener at the Rose Gardens, farm help at an apple orchard, and wrangler at a horseranch. That way I can be close my family and get some physical exercise. But maybe I should throw caution to the wind and get a job in California or Florida? I'm also getting my driver's license (finally). But I cant use my parent's car, so my grandparents are helping me. This time, I even have my doctors telling my parents to let me home for the summer and teach me to drive! They just dont listen to anyone but themselves.....What do you guys think? Especially the "oldtimers"? I'm also not getting anywhere with my docs. Wondering whether I should pursue an out of system referral or just see if I feel better with time. Oops, gotta go, library system computer is kicking me off.

Peace
Homeskooled
 

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some days I just hold my head in my hands and just cry - cry for myself and cry for all that's lousy in the world where we have so much - other days I'm optimistic and a serious go-getter for me and my family - it's weird but those crying moments often have a strange clarity accompanying them

rob
 
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JanineBaker said:
I didn't lead anything remotely resembling a normal life. I had no relationships, very very few friends...from 17-25, really didn't spend time with ANYone except my immediate family, went out to go to the psychiatrist and occasionally woudl venture to the store or something with my grandmother. I lay in bed mostly in the dark and watched tv.
Sounds like me.

JanineBaker said:
....every hour was a month, and every day was a year.
That's how I feel all the time.

I can't say when I "got" dp, as I only heard about it last night, but I've lived this way my whole life and I'm 27. I'm trying to FORCE myself out of it right now so that I can do something with my life, but I always worry because I just don't know if I can make it/keep up. I know I was never really a kid. I was always the little adult, even from a very early age. Very serious, intelligent, and withdrawn.
 
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Dreamer said:
I had a very unsupportive, verbally/mentally abusive mother and an absent father which made matters much worse. No siblings, no real extended family.

I was thinking about this again the other day, I had a childhood totally lacking in love and emotional support, so that affected me deeply, and psychologically, but I see DP, anxiety, depression as an illness I had a predisposition to. And of course the psychology interacts with the illness... there is really no separating the two -- they act upon each other.

As a young girl I was more "unhappy", "anxious", "felt different" but also could bring on episodes of DP/DR at will that weren't scary. But I was constantly anxious and sad.
That sounds a lot like my life too. I'm an only child in a really small family, all of who are verbally/emotionally/mentally abusive to this day. I wasn't loved, cared about or given any emotional support growing up. I always thought it was because by the time I was 5 I decided that I was athiest, and my mom wanted me to be a little miss christian missionary and since she didn't get that, she cared less and less about me through the years. By the time I was 8 I was convinced of it. So she stopped caring about me. I grew up not being able to say what I feel because I'd only be yelled and screamed at about how much trouble I cause *her*, how bad I make *her* life, etc. I always thought I should have been a parent's wet dream - a smart, advanced kid. But no, I grew up and am still thought of by my family as the worst person who ever lived. They CONSTANTLY accuse me of being a drug dealer, stealing, and everything else illegal when I have never in my life been in any kind of trouble. They just think I'm an evil, horrible peice of s**t. But they think of themselves as perfect wonderful saints who have done so much for me and I should be kissing their a** all the time. The only difference between me and you is you grew up wealthy and I grew up in poverty, which has made my life hell because it's next to impossible to make anything of yourself when you're poor, unless you look like a supermodel and I don't so I'm screwed. At one point as a kid, somewhere around 9 to 11-ish I guess, my mom actually said to me she'd never have another kid for fear that that one would turn out even worse than me. They've always thought of me as the most horrible person who ever lived. Kind of makes me wish I did have the finances to get drums again (I had them and had to sell them to get another transmission for my car) and to learn to play and get my band off the ground, because trust me, they want evil, they'll see evil, there's no one darker than us. But it would take hundreds of thousands of dollars, especially since one of our core members is from Scotland and has a 6 year old, we'd have to be rich enough to get her into the country. *sigh*
 

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Dear ashes,

Man, your parents sound like my mother. My father wasn't really abusive he was emotionally and physically distant -- also had OCD/hoarder-clutterer (even though he was a surgeon -- never judge a book by its cover, I tell ya' -- he gambled most of his money away!).

But you could almost plug in your life into mine. Some of the things your parents said about being "bad, criminal" -- my mother told that to certain people, e.g. her attorney who is now my "Trustee". I am "incompetent, a sociopath" etc. She left an insane Trust fund for me when she died that expires when I turn 60. The attorney is presently 77 years old (I keep forgetting his age, but it's ridiculous -- she also lost a tremendous amount of money to "punish" me from beyond the grave in this manner.).

She had no friends. None.

I know for certain she didn't love me. I'm certain of it and have sort of come to terms with that, however you can. And I hate her.

See I find it interesting that there are a good group of us who were clearly treated as "objects." My mother was a psychiatrist and "observed me", "diagnosed me"... in one sense you could say she caused this illness to happen.

I don't think that is necessarily true, but it makes things extremely difficult. I always say, if I didn't have any anxiety/DP/depression, I would STILL go for therapy for many psychological issues I have with relationships, self-esteem etc.

The symptoms I see come from chronic anxiety, which was real, in the sense that my mother threatened to abandoned me on a regular basis, and my father (well she threw him out of the house) and he "abandoned me" in an emotional way.

On the other hand, I'm pretty sure my mother was high-functioning borderline, and my father as I said had anxiety, OCD, some depression I think. My guess is I inherited these propensities.

Freaks me out how your mother said, "We won't have any more children because of you." (sorry not exact quote, but my mother would say things like that, including things like "You must have been switched at birth, you little bitch". Then she'd turn around and be sweet as pie for a while.

Never could tell when an explosion would hit.

I am sorry you grew up in poverty. Poverty isn't easy on any child. I was just damned lucky. And yet my mother used money as a weapon as well. I was disinherited more times than I can remember. She threatened to pull me out of private school endlessly. Threatened to throw me out of the house, etc., etc.

Well this was a good vent. Sometimes I am still extremely angry about the past. I feel if my parents had been understanding and emotionally supportive (both being doctors for God's sake) my anxiety/DP, etc. might be far less limiting to me.

Nothing can substitute for a complete absense of love from a parent. It leaves you empty at the core, regardless of how you deal with it.

Well, you know I understand. And this allowed me to crab a bit, LOL. 8)

Odd though, I was very gregarious, funny, "everybody's friend", a performer my whole life. Frequently to my detriment. I never expressed my own opinons/feelings, I adapted to what other people wanted me to be. I adapted,yup. One survives as one can.

Take Care,
D
 

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P.S. -- I know this isn't the truth in every case, but being an only child is the pits. I know a lot of friends who don't necessarily get along that well with their siblings, but they are "they for them" -- e.g. I have many friends now whose parents are elderly and infirm. They can divvy up the caretaking, etc.

Again, thank God my mother had money. She got Alzheimer's and was in a lovely Nursing Home for ten years. She could afford it. I said many times when she first got ill, as I didn't know all of her finances, that if I had to take care of her myself, my only option, seriuosly would be to get a gun, shoot her and shoot myself. Not lying.

Sadly, my close friend who recently took her own life was also an only child, left to care for her mother. She had many problems. She did exactly that -- well, didn't shoot her mother, but killed her and killed herself. I have to write that down or tell that to someone every day, as it is still unbelievable to me.

I told her my feelings years back about my mother. I have occasional dreams where my friend says to me very calmly, "You told me to do this." I know I didn't, but she was completely alone. When I look at her life, literally, there was NO light at the end of the tunnel for her. NONE.

I don't advocate taking lives, but if you knew her entire story, compounded by being an only child, you would see, what she did was a logical choice. That sounds inconceivable. But it was.
 

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rob said:
some days I just hold my head in my hands and just cry - cry for myself and cry for all that's lousy in the world where we have so much - other days I'm optimistic and a serious go-getter for me and my family - it's weird but those crying moments often have a strange clarity accompanying them

rob
Dear Rob,
Couldn't have said it better myself. Right now I'm in neutral, getting ready for a move. I don't let feelings in or out. Too much happening and I can get things done.

Sometimes I cry (not so much recently), or feel angry inside -- don't express it either, been there/done that -- at all that's been lost in my life. I accomplished so much until I burnt out. I forced myself.

I see life as being wonderful. Challenging and sad, but full of wonder, and a lot of wonderful stuff. And I've never really been able to enjoy it. REAAAAAAAAAALY ticks me off.

I also understand how sometimes a really good MASSIVE cry can feel more "real". More real than any other emotion.

Strange now though. SO much weird stuff has happened in my life recently, a lot of anxiety provoking stuff, that I have "shut down" emotionally. The DP/DR aren't worse... I've discovered cutting out all caffeine, and I mean ALL, has helped quite a bit.

But, rob, I know what you're talking about.

One day at a time.
One day....
Take Care,
D 8)
 
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