marius

Hey Shiny Soul,

I love what you wrote! You have a wonderful awareness! And ditto what Login said about your ability to express yourself. [And, btw, I also edit, re-write, delete, don’t know what I’m writing as I write it, and so forth!]

Anyway, thank you for sharing with us! I’d like to address some of what you said because I am trying to understand. You wrote: “I feel alone so much ….my most common emotion is loneliness. I just want someone to understand me.” Gee, that’s a lovely wish! So I’m thinking about it and I got to wondering what “alone” and “loneliness” mean to you. I know what they mean to me. When I feel too alone, too lonely, I am generally feeling many other things at the same time: inadequate, afraid, angry, hopeless, depressed, strange, awkward, maybe even terrified. So, my alone feelings are a mixed bag. Are your alone feelings anything like that?

Anyway, however your feelings are, I wish I had a magic potion to offer, but since I don’t, here’s a story. When I was in therapy I saw quite a few different therapists, worked with one for a while, then moved on. Each seemed better than the previous one, or else (giggle) I was getting better. But there is something that happened that, well, I'll just tell you. I was seeing a new therapist and she said almost the EXACT same words the previous therapist said, and they had had no contact with each other. What she said was, "I want to know why you didn't suicide. I'm not going to tell you that it's rare for you to have survived, but I AM telling you that, statistically, most people coming from your circumstances would have suicided. Why didn't YOU?" Well gee whiz. What a question. I think I just sat there in a stupor but what was going around in my brain was a thought like this, "So, things WERE as bad as I thought and if they were that bad, no wonder I've had such a hard time. Anyone in my situation would have had as hard a time as I've had." It was an illuminating moment.

The reason I share this is to let you know that although I may not understand *exactly* what you feel, I have had feelings of desolation and I see loneliness as one of those feelings. My aloneness might have been different from your variety but it was painful and that is what I hear you saying, that the loneliness hurts. I don’t know how bad your loneliness hurts, but when I was feeling desolate one of my therapists told me about the “Dark Night of the Soul,” by St. John of the Cross. Not sure what your religious or spiritual beliefs are, but for me the important part of the story was the way my therapist described St. John's desolation and pain. That was the first time I'd ever heard someone describe, with great accuracy, how I felt. No, it didn’t make my dark feelings go away, but it did make them easier to go through. And, it sounds like that is what you are doing too – going through them.

And something I noticed about what you wrote, you had a concise list of what you want. I read it and thought, “She KNOWS what she wants!” That may not seem like a big deal to you but it took me years to know what I wanted. The best I could do was say, “I just want the pain to stop.” That was my best dream, beyond that I was clueless. I didn’t have many dreams like being able to sleep, not worrying about the next disaster … nope that was beyond my abilities. So, applause for you!

PS There’s some Musical that has a kind of ditsy song that says something like, “You’ve got to have a dream if you want a dream to come true.” I love that.

PSS Also love everyone's replies and stories here! So warm, so caring, refreshing!

marius

I wrote this after seeing lynnspotter's post ... and then couldn't find it, thought I'd deleted it. So, this starts with a response to lynnspotter's comment, "This really is a great thread to promote understanding!"

It IS a good thread for that, lynnspotter. And thanks for sharing about you and your sister. Amazing what medications and science and education are doing for us today! I'm so happy you are doing well. It's great, isn't it!

Since we are finding this thread educational, I would like to share a bit about paranoid schizophrenia. [And, I am not a medical person. All I know of schizophrenia comes from reading, the medical staff that work with my brother and the experience of knowing with my brother.]

When my brother was first diagnosed, I got books to learn all I could. One of the surprising things I learned is that schizophrenia is a really HUGE umbrella-word that covers numerous differing conditions and the paranoid kind also has wide variations. Some people with PS are almost completely disabled. Others can work. My brother is extremely functional for someone with his diagnosis. Perhaps this is because he is also extremely intelligent. I don't know.

Yes, he has his "things" (which I call schizo-dramas) where he thinks the wildlife agencies and aliens from outer space are in cahoots with our government to plot devious things. He also has hygiene issues. Water coming out of faucets is tied in with one of his schizo-dramas, gives him a water phobia, so that makes cleanliness a difficult task! He lives in another city, but I visit a few times a year and he manages to shower for my visits. I sure appreciate it - who wouldn't? One time I complimented him on the clean hair and clothing and he said, "You should have seen me yesterday - I looked homeless." Indeed, he does look like that way more often than not. He can also get that "crazed" look in the eyes but only when he needs an adjustment to his meds. Then I call his nurse and we encourage him to get his meds adjusted. This is always difficult. Any change is. However he generally complies and things go back to normal.

He also has strange and curious interpretations about ordinary events. You know when you are talking with someone and you lose your train of thought? It happens to everyone I know. The brain goes blank. When this happens to Matt he'll say, "Damn them, damn them." At first I had no idea what he was talking about. So he explained that they have "taken his thought" and that they do it just to mess with him. (I've never been sure who "they" is, but it seems it's his voices although he swears he has no voices, instead he has "spirits.")

So I told Matt, "I lose my train of thought all the time and I can guarantee you there is no one standing around in the ether stealing my thoughts." There was a LONG pause and Matt said, "Well, I wouldn't be too sure about that if I were you!" Well, I don't know how all of you would react to a comment like that but it was all I could do to not burst out laughing. Something about the idea of someone "stealing" my unimportant thoughts tickles me. And, what an odd job that would be ... to go around "stealing" people's thoughts. : ) [Matt probably would not appreciate my humor on this point, but I HAVE to laugh, it helps me cope.]

Matt was diagnosed at the age of thirty-four, seventeen years ago. It was a rough road at the beginning, but he keeps getting better. In the past two years he's started calling when he feels depressed, lonely, or something like that. He never did that before. He'll call and say, "I just need someone to talk to. I'm not feeling good today." Sometimes he'll even say he just wants to know that someone loves him. This is a monumental accomplishment for him to be able to express that kind of vulnerability, I mean, there are "normal" people who are unable to be that vulnerable. I credit Matt's improvements to the excellent care he gets from the medical team, especially his psych nurse who gives him his shot once a month. Matt won't talk to the psychiatrist, but he'll talk to the nurse and considers her a good friend.

And for comparison, I have a friend with a 22 year old daughter who was diagnosed with schizo-affective disorder. That sounds mild, but it is not. My friend's daughter is no where near as functional as my brother. Her situation is extremely difficult in just about every way you can imagine. So, paranoid schizophrenia, which gets all the Hollywood attention, is not the worst of the schizophrenic spectrum diseases. Well, let me re-phrase that: perhaps it can be the worst, but in every case? No.

marius

Since it was raining yesterday, my plans got cancelled and the writing bug bit. Alas, there is no cure for the itch but there is a remedy. I want to write about understanding. (not that I understand *anything* . . . )

Have been thinking about the letter solosater posted. What I like about the letter is that a person with fibromyalgia (and the other disorder) has taken the time to TELL people about his/her reality. I just want to hug that person. (Forgive sappy, just can't help it.) What I keep learning about my family, myself, is that other people can read everything in the world about depression, PTSD, fybromyalgia, or whatever it is, but those are just words. Each person's experiences are different.

When I was in an extended therapy (three years) I met a man and we dated about 18 months. I call him, "my therapy relationship" because I was in therapy before, during and after the realtionship. One issue that arose was that this man, trying to be considerate, read everything he could find about PTSD, dysthymia and panic/anxiety. The problem was, once he'd read all of that he thought he "knew" me and how to deal with my peculiarities. When relating to the therapist the problem this was causing, she said, "YOU have to be the author of your illness." I didn't get what she meant. (Again, it is normal for me to be dense.) She said no illness is the same for everyone and that *I* should be telling the man how things affect me, how I am, and not the other way around. Well, that was a new thought. As time has passed I've found it an invaluable thought.

When we got married nine years ago, we had dated four years so spouse was familiar with my diagnosis, family history, etc. But, then we moved in together. One day we were talking and I said, "I'm getting a panic attack. I need to go upstairs and lie down." Spouse kind of blinked, but kept talking. So I restated my problem. Still, he did hear. By this time I was reaching critical mass. Panic attacks were like that for me - felt I would literally explode into a million tiny pieces, taking everything within a mile radius along with me. So, without another word, I turned, went up the stairs, got under the blankets (weight and dark help) and stayed there a few hours.

Then I went downstairs to find spouse in a tizzy. He felt I'd been rude to walk away from him, yes he knew I was having a problem and yes he'd kept talking, but I'd turned and left without saying one word! That was rude! As we continued talking he said, "Well, you LOOKED fine. How am I to know you are reaching critical mass when you LOOK normal!"
Ah, illumination. It dawned on the old bean that it would be hard to know how awful someone is feeling when everything about the person looks fine. And, that would make it hard to respond appropriately to one who calmly says, "Oh my, I'm getting a panic attack." Nothing about my tone of voice or body language had matched what was going on inside! No wonder he was confused. Finally I was able to explain it better and after that day, he never delayed me if I said a panic attack was coming on.

Here's how I explained it. When a panic attack starts, there is an actual physiological change that interferes with breathing. It feels like you are going to suffocate. It is terrifying, engulfing. In my family, people would be walking around "fine" one moment and exploding all over the place the next. You never knew what had set them off. And, of course you didn't, they didn't know either. As a child and way into adult years, the only thing I knew was that people in my family expoded and when they did, you didn't want to be anywhere near them. It was a mystery. But, looking back, I now believe that much of the exploding was a panic attack gone bad. Still, I never got used to it: one minute you're having a nice cup of tea with your mom and the next she is biting your head off and it escalates into a screaming rage. I did not EVER want to do that to people, explode all over them. So I developed a technique: stay as calm as possible, quietly state the problem it that was needed, and quickly remove myself so I wouldn't explode and hurt other people, and so I could also attend to my needs.

Mercifully, I married a lovely man. He listened and to some extent, understood. He said (and I still giggle about this), "So if you tell me things are bad, no matter how pretty or healthy or calm you look, if you TELL me you are not fine I need to believe you ... and believe you immediately!" Yes!

And the gods have humor because not long after out talk, panic attacks became fewer and I've not had one in years. However, that situation helped us talk in new ways. One of the things we learned in pre-marriage counseling is that we may have to tell the other person the same thing, express the same need, twenty (or thirty) times for the need to be heard and honored. Therapist said that is the way it is in relationships. Really? I don't know if she was right, but both spouse and I laugh because it seems she was. So we made a game of it - we kind of count. He'll say, "I've told you 18 times that I don't like it when you use my cutting board." Then I apologize, promise to be considerate and tell him, "But remember, the therapist said I might need to hear it TWENTY times before it sinks in." So, he'll quickly tell me two more times, "Do not use my cutting board, now you've heard it twenty times." Then we laugh. It helps to laugh and joke. Very much.

PS And ... I did figure out why I'd kept using his cutting board and even he had to agree: his is in the perfect place in relation to refrig, knives, and so forth. Mine is not in such a good place, but will spouse trade? No. So, I do use his cutting board now, just have to clean it to his standards when I'm done. We are all such funny creatures, we humans!

Robindcr8l

When I was in the "float pool" many years ago at my hospital (this means you float to whatever unit needs you that day), I was often floated to the psych unit because many of the other float pool nurses did not like to go there and I just never minded it. Of course, I'm comfortable with crazy, maybe because of my brother, or maybe because of myself. LOL

One day, I had a patient who was so tortured by voices. It was so sad to watch her. She was in her mid-fifties and had been mentally ill all her life. She was sweet and harmless, but she would sit in a chair and just cry and yell at her voices to SHUT UP! I asked her what her voices would say to her. She said most of the time they just repeated her name over and over and over. They didn't tell her things, or give her directions, just repeated her name over and over til she was losing her mind. I asked her if the medications helped this at all, and she said that they would make the voices not as loud. So, if she took her routine meds, she still heard voices ALL of the time. When they got louder and louder, she would ask for a dose of her "as needed" med, which would dull the voice to a whisper. Her whole life she was tortured by something as simple as her own name. It was very sad.

So I asked the psychiatrist who was rounding that day exactly what caused people to hear voices. I mean physiologically, what made your brain HEAR something that didn't actually exist. He said no one knows, but there are several theories. The one he favored, the one that made the most sense to him, was that for some reason the schizophrenic brain could not distinguish between what was their own THOUGHT, and what was an external voice. So when "Shirley" kept hearing her name over and over, it was actually her own thought that she was hearing, but interpreted it as an external voice. I think he explained it better than I am, but I found the theory interesting, and it made some weird sense to me.

In any case, it is sad that so little is really known or understood about mental illness, and even sadder that some people, some otherwise sweet and kind and lovely people, have to live in a constant state of torture with little reprieve. I'm glad your brother is helped by his meds and by your love, Marius. That makes him one of the lucky ones in a weird way, you know??

Login

Marius and Robin, your communication skills are amazing. When I eventually 'go off my bean' I want you both to be there ... to listen to me and to understand ... and Robin, will you be my private nurse when I'm old and senile?

Robindcr8l

Login, I will be your private duty nurse. I'm willing to commit to this for a number of reasons. 1. I would love to come live in England. and 2. I strongly believe that you will keep me laughing daily, no matter how far gone your mind is! I may not always be laughing WITH you, mind you, but I'm quite certain I'll be laughing!

marius

Login and Robin, you're cracking me up! Thanks, I love to laugh. Yes, Loging, you may count me in for joining the amusement when or if you "go off your bean." However I believe I am not be far behind in age and thus also in the going-off-of-the-bean!This means, alas, poor nurse Robin would have TWO to her care!

Robin might also need training in SAD (seasonal affective disorder). I've heard that it is rainy, cloudy, drizzly in England much the time. If this is true I would have to take mini vacations to sunny Mediterranean locals, or whever there is sun! : )

Think England weather belongs in Polenta's "other countires" thread ... but it could also belong here because MANY people have problems with weather. When I lived in Portland, Oregon I LOVED the beauty. However nine months of Pacific Rainforest weather was too high a price to pay for that beauty ... I moved back to Missouri.

marius

And Robin, you are right about my brother being one of the "lucky ones in a weird way." He is aware of it, and I am too. One time when I was visiting Matt in the psych ward he said, "Oh yeah - that roommate of mine, he's a real nut! If you notice, most of the people in here are. I mean, you can't have a conversation with any of them - they just walk around talking to the air!" (And, my dear brother - all he did was cuss out and beat up a newspaper vending machine, at a busy intersection, because the spirits told him to.) : )

That is wondrerful you didn't mind "floating" to the psych ward! Except for myself and one sister, everyone in my family is uncomfortable around Matt. And in an ironic twist, Matt is amazingly aware of how nutty our family is and thinks they should all "fix" themselves. So, he won't speak to them because he thinks this distancing will cause them to "awaken." Um - no, they are relieved they don't have to interact with him. Sigh.

I like what that psychiatrist told you about people with schizophrenia hearing voices and thinking the voices are "outside" their head, when in fact they are "inside" the head. Have heard that theory and it seems to fit.

Login

If you ever come to England, you will be made very welcome and, marius, it's a myth that our weather is always abysmal ... it's only yucky for 50% of the time ... but you're right about that belonging in polenta's 'other cultures' thread.

Laughter is the best medicine ever invented. There's nothing better for lifting the spirits ... and the adrenalin that comes with it often lessons the aches and pains.

Normal

Login's right about laughter - a daily belly laugh ranks right up there with my 2 or 3 squares of chocolate. Your stories have touched me greatly. I'm so fortunate not to suffer from my autoimmune condition, though the joints do deteriorate (unrelated). In my years working in welfare assistance, I met folks with all these problems, plus several child molesters, a murder or two and one lady who handed me a paper from her psychiatrist explaining her 5 or 6 personalities. And I DO believe we are not only all related, but all part of the one thing, Whatever you wish to call it. I suspect we get the challenges we need to firm up our spiritual beliefs. Those of you who are troubled with super-sensitivity are actually blessed - what some of us would not give for your radar. Good on you for learning to trust it at an early age. I'm still working on it.

As for dreams, I've recorded mine off and on for 30 years. One figure I see now and again is a talking horse. Never seems at all odd in the dream.
I have learned that dreams of floods or plumbing mean I need to wake up and empty the bladder! In the weird experience field, I had an out-of-body experience sitting at a family holiday meal. Long ago and only once. Still regret that it did not occur to me to go beyond floating up above the front door and just go on through the wall. I do not plan to get much to get much weirder in my old age than I've always been. And, yes, Normal is vastly overrated. I'm off to visit Eastern Europe and see all the changes. Have fun while I'm gone.

marius

Normal, you crack me up ... "do not plan to get much weirder." Me either but one never knows. (giggle)

My brother, (Phd., science major, agnostic, and seemingly "normal" fellow) had an out-of-body experience. He too wondered why he didn't try to go through the ceiling or walls. Also knew a gal who said she had them while driving her car. Said it was scary. Yeah - bet so!

Want to know if the talking dream horse says things you can remember? Had a dream in my teen years and realized I was breathing underwater, then realized I was dreaming! That was fun. Just kept swimming around in the pretty coral reef saying, "Wow - I can breathe under water!"

Have fun in Eastern Eurpoe, Normal, and when you get back, maybe you'll go to Polenta's thread about "other cultures" and tell us about your trip?

marius

Login - I do think laughter IS the best medicine. Read somewhere once that average child giggles or laughs something like 300-400 times a day ... average adult 20 times a day. Think kids have the right idea. : )

Login

It's eight days since solosater looked in ... why are so many TDers going silent?

polenta

solosater, we beg you!!!

sheftali52

I hope solo isn't having a bad spell. Perhaps our collective thoughts of her will draw her in.......

marius

I've been wondering about her too. Hey solosater - aren't you the "official" host of this thread (giggle)? We miss you! : )

solosater

SORRY!

I had a pet-sitting job come up at the last minute and there was no internet!!!

It's nice I was missed (I totally intended to let you all know I would be away for a while, sorry about that). I promise to catch up on all the posts asap. I also have some interesting bits to tell but no time right now...

solosater

Oh, and I'm fine! Thanks for worrying though;-)

Login

Thanks for looking in ... see you later.

marius

Looking forward to your stories and insights solosater.
Great to hear from you!