[spiritual_emergency]

For those not in the know, I reposted this here with D's consent because the location where the query came up doesn't offer as much in terms of software support. I thought I could respond better in this environment but I'm hopeful some of the rest of you who have an intimate understanding of her experience will also share your insights, support and ideas.

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There have been differences in the hallucinations I have experienced. Many have been like a brief comment by an external voice, bell, or other sound, that seems real as anything else, but I can see no reason that it could be real in most situations. If the situation is such that it is rational that there could be a sound like that in the situation, then I am not sure. Sometimes I am sure that others must have heard them since they were so loud. But I see they didn't react so I judge that they didn't. These don't have any emotional content unless they are so frequent that they become disruptive and annoying to the extent that they are louder than reality. They don't feel frightening, just interesting, and then irritating. These seem related to poor sleep or seizure.

I can understand why in some cases hallucinations are associated with dissociation. What I experience as dissociation is like a layer of thick grey fog that overlies everything and only lets part of what is real through, so it is easy to misinterpret what is really happening. I get more nightmares when I sleep as well. I can't tolerate noise or music. Then shadows and things out of the corner of my eye startle me and take on a negative context until I can reason with myself that it is not real. Sometimes this fog makes reality hard to see, and I can get lost, or confused about where I am, and I have to try to figure it out logically. This happens driving, or doing paperwork, and can make things take a very long time to complete, because I can't concentrate.

These occur more with anxiety and depression. This is my most common state of mind. Then there are the ones that are spiritual in content, complex visual and auditory, give me a sense of insight into the universe, there is a euphoric sense of peace and meaning in these. They are rare, but I really enjoy them. They seem more associated with mania. The thing about all of this is that the hallucinations are thoughts and they are as much a part of my memory and my life as any trip to the park.

It is the moods, with the slow thinking, and fog that become the problem. It's much harder to say a mood isn't real, or that the molasses movement of thought isn't real. It's even harder to care about doing anything well. Of course, depression is my longest delusion.

The thinking in mania at first is good focus, good concentration, insightful, where I want to be. Then I can't complete or recall a thought for more than a few seconds. I get giddy, embarrassed, over confident, then aware of my foolishness all like watching thoughts and moods, like scenery go by out of a car window. And all I want to do is sit in my car and watch the world go by it's safe, less embarrassing.

There has been so little time that my brain thinks normally, but it is closer to that right now than it has been in 20 years or more. I keep thinking what if I can't stay here for more than a few weeks or months? How can I keep being this person who is never herself because she is never her long enough to experience ...who that is? If I identify myself with my most frequent self, I am depressed. That's why I need to find meaning in depression. But I don't need it now, because my experience now doesn't relate to that feeling. So which way will the wind blow? In all of this I am just a person wandering wherever the road goes.

[spiritual_emergency]

Hello D. I hope you find this discussion easily enough. There were a few factors that really jumped out at me in your post that I thought I might speak to.

Sometimes this fog makes reality hard to see, and I can get lost, or confused about where I am, and I have to try to figure it out logically. This happens driving, or doing paperwork, and can make things take a very long time to complete, because I can't concentrate. ... It is the moods, with the slow thinking, and fog that become the problem. It's much harder to say a mood isn't real, or that the molasses movement of thought isn't real. It's even harder to care about doing anything well. Of course, depression is my longest delusion.

Something that frustrated me in terms of my own child's experience was that once they were medicated, it became difficult to determine if what we were seeing was due to the medication or whatever state of mind they were in. In your case, you mention two factors that might contribute to this foggy feeling or molasses movement -- dissociation and depression -- but sometimes this can be related to medication as well. I don't know what your medication status is, but it's possible that if you make use of them you might benefit from a different med or a med reduction.

There has been so little time that my brain thinks normally, but it is closer to that right now than it has been in 20 years or more. I keep thinking what if I can't stay here for more than a few weeks or months? How can I keep being this person who is never herself because she is never her long enough to experience ...who that is?

Patricia Deegan wrote an article a few years back that, I feel, addresses this aspect very well -- let me drag it in here for you. Note that the article makes reference to "God" and that may not resonate for you. If that's the case, it may be helpful to simply replace that word with "center" or some other term you feel comfortable with...

I was in a very difficult, emotionally turbulent passage, punctuated with periods of psychosis. The anguish of it seemed endless, and I had lost all sense of time. I remember pressing my body against the concrete wall in the corridor of the mental institution as wave upon wave of tormenting voices washed over me. It felt like I was in a hurricane. In the midst of it, I heard a voice that was different from the tormenting voices. This voice was deeply calm and steady. It was the voice of God, and God said, “You are the flyer of the kite.” And then the voice was gone. Time passed and I kept repeating what I had heard, “I am the flyer of the kite.” When I repeated this phrase, I had the image of a smaller me, standing deep down in the center of me. The smaller me held a ball of string attached to a kite. The kite flyer was looking up at the kite. To my surprise, the kite looked like me also. It whirled and snagged and dove and flung around in the wild winds. But all the while, the flyer of the kite held steady and still, looking up at the plunging and racing kite.

“I am the flyer of the kite”, I repeated again. And, slowly, I began to understand the lesson. “I have always thought I was just the kite. But God says I am the flyer of the kite. So, even though the kite may dive and hurl about in the winds of pain and psychosis, I remain on the ground, because I am the flyer of the kite. I remain. I will be here when the winds roar, and I will be here when the winds are calm. I am here today, and I will be here tomorrow. There is a tomorrow, because I am more than the kite. I am the flyer of the kite.”

The notes in my chart that day probably said I was floridly psychotic. However, for me, that day was an epiphany. The lesson I learned on that day was a lesson I relearned, over and over again, in my recovery. Basically, I learned there was a deeper part of me, that was centered and unmoving and steady and constant and calm. Without this deeper part of myself, the wind could easily blow me away. This deeper me learned not to over identify with the good times or the bad times.

Like the kite blasting around on a windy day, my recovery often meant having a difficult time, with lots of ups and downs, pain and suffering, setbacks and bad days. But God taught me there was more to me than these ups and downs. Deep down inside, no matter how rough things got, there was a still, quiet place within me that held steady and that survived. On some days, recovery, was just about learning to ride the tumultuous winds, while hanging tightly to the kite string, until the storm passed. At other times in my recovery, I needed my therapist or a trusted friend to hold the string, until I could reconnect with the flyer of the kite within me...

Read the full article here: Voices of Recovery: Patricia Deegan

I think the essential message is that there is a "you" within you that remains stable and unchanging -- the rest can be thought of perhaps as clouds moving across a sky or ripples across the surface of an ocean.

If you have experienced psychosis this can deeply impact one's sense of self-identity. Some people, may find that they benefit from a therapeutic relationship as a means of rebuilding that identity and shoring it up in the vulnerable places. Is that an option you've had the opportunity to explore?

[scribbling2much]

Hi I did find it, I don't think it is my medicine, because I don't take much, only 600mg Lithium. I haven't been able to tolerate antipsychotics because of the restless legs. I have had diagnoses come and go, TLE, MS, Schizoaffective, Conversion disorder, PTSD, but Bipolar with psychotic features has been settled on. I have been in therapy almost weekly for 7 years. Right now I am better than I have been in ages, but all of those diagnoses are about my brain. Whatever the problem is it's been there almost all my life. The biggest problem for me truly is not having a persistent tangible sense of self, that, and "meaning." I love Patricia Deegan, she is such an inspiration. Is that from her W.H.O. Speech? I watched it on line several years ago. I can't complain too much, she seemed to have been much more ill than I have been. I would like to hear her speak now after all this time, to find out what still is difficult, and what is not.

[spiritual_emergency]

scribbling2much: I have had diagnoses come and go, TLE, MS, Schizoaffective, Conversion disorder, PTSD, but Bipolar with psychotic features has been settled on.

MS is one that doesn't often come up in conversations -- have you ever been tested for Lyme disease?

Cause: Lyme Disease

Lyme disease is no small health threat to persons living in the Northeast, the Mid-Atlantic states, Wisconsin, Minnesota, and northern California. True, the first signs of its onslaught are usually no more than flulike symptoms. But it is also capable, over the long haul, of inflicting a variety of other physiological insults—say, muscle pain, arthritis, heart inflammation, severe headache, stiff neck, or facial paralysis.

Now a new study adds one more malady to that list: psychiatric illness.

The study was conducted by Tomá Hájek, M.D., a psychiatry resident at the Prague Psychiatric Center in the Czech Republic, and his colleagues. It is reported in the February American Journal of Psychiatry.

Source: Psychiatry Online

That's an older article and the spread of Lyme is now acknowledged as having been more widespread than believed. I did meet a woman not long ago who had been diagnosed with both psychiatric disorders and multiple schlerosis but she actually had Lyme disease and has experienced improvement since she began being treated for that.

The biggest problem for me truly is not having a persistent tangible sense of self, that, and "meaning."

If you don't mind sharing, what have you come up with for yourself in terms of "meaning"?

[scribbling2much]

Yes, before I ever saw a psychiatrist I had months of neuro work ups. Lyme disease was negative. I realize at this point my brain has problems. I have a mild seizure focus, hyperintensities (over 50) on MRI, from some past episode of encephalitis, and a sleep disorder. None of that matters, there is nothing more to do about it. I still had symptoms that were making me miserable, and sleeping pills and Lithium help.

[scribbling2much]

I was un diagnosed with MS because after 10 years I never had symptoms, and although the lesions are there, they decided they were from encephalitis, because my spinal tap was negative. Psychiatry is much less painful and expensive than medical doctors. I had the spinal tap 6 years ago and quit going to anyone but my psychiatrist and therapist.

[scribbling2much]

I have settled on "no meaning" for now. I decided that after all of the false structure I have seen collapse, and after realizing that I can't tolerate the messages of religion with my tendency for psychosis. I went through a time when I felt for years like I was drowning in a storm of meaninglessness full of terror at the idea of meaninglessness. Finally I decided to choose it, to choose to step into the fear. It took a year of long walks before the fear began to abate. It's still present, but not to the point of terror and drowning. Now I'm on the ocean, in a boat, and the storm is mostly gone.

[scribbling2much]

The Beta-Interferon I took for the non-MS is a risk factor for Bipolar by the way.