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Originally Posted by Tsunamisurfer
I suspect it may be described as derealisation because I experience it as unreal.
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This fits with what my son has described, and I've suspected derealization for him too.
The wikipedia article describes it this way:
"
Derealization (sometimes abbreviated as
DR) is an alteration in the perception or experience of the external world so that it seems strange or unreal. Other symptoms include feeling as though one's environment is lacking in spontaneity, emotional coloring and depth.It is a
dissociative symptom of many conditions, such as psychiatric and neurological disorders, and not a standalone disorder. It is also a transient side effect of acute drug intoxication
, sleep deprivation, and stress." (The whole wikipedia article is good btw.)
I've had the experience myself, if only for a few seconds at a time. I've always attributed it to lack of sleep and/or strong emotions. I can imagine that it would be extremely distressing to have it last for more that a brief time.
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Like your son, Costello, the perceptual experiences have been while coming off antipsychotics, but they also preceded the start of hallucinations and delusions by several months.
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That was what I was wondering.
Here are my thoughts for what they're worth, and they're a hodge-podge, so take anything that's useful and leave the rest.
1. Time is a great healer. The only certainty in life is that everything changes, and I strongly believe that your body wants to move toward health and it often will if you just leave it alone.
I used to have terrible low back troubles. It started when I gave birth at 23 and got worse from hauling the little tyke and his paraphenelia around. I remember the time when I lifted my son, his stroller and all his assorted necessaries and carried him up a flight of steps. At the top I leaned over, set the stroller down, and then ... I couldn't stand up again!

It didn't hurt; I just couldn't stand up. I had to sit down on the step and try to work out what I was going to do about this new development. (While I sat there, the spasm eased, and I could go on.). That began over 2 decades of back troubles and pain. Then one day a couple of years ago I realized that I hadn't had a back ache in ages. I'm still pain free. So what did I do to solve the problem? Nothing. I went about my life despite the pain and the frickin' inconvenience of walking like an elderly woman half the time. And it went away.
Sometimes things just get better. We've all experienced this. I don't know why we think mental illness is any different.
And sometimes things don't get better. But even here time is your friend, because given enough time people can adjust to anything. People adjust to such horrors as living in a refuge camp or being a quadruplegic. What was awful at first becomes the new normal. That doesn't necessarily mean they like it, but they accept it and move on the best they can.
2. Marsha Linehan's idea of radical acceptance can help. I once watched a video of Marsha Linehan herself explaining radical acceptance. She described it so beautifully. I know I can't do it justice, but I'll try.
When you're confronted with something you don't like, that causes you pain, you have four choices. You can fix it. You can change the way you think about it. You can accept it. Or you can continue to suffer. Pain is the negative thing that's happened to you, and it's unavoidable. We all have some pain in our lives. Suffering is how you react to the pain, and it's a choice.
So if you can't fix this problem you're having, and you can't find a way of thinking about it that makes it a good thing, and you don't want to continue suffering, you must accept it. Accepting it doesn't mean you like it or approve of it, it just means you aren't going to rail against it anymore.
I've never found anything on the Internet that does as good a job of describing radical acceptance as that first video I watched, but this at least sums it up accurately:
http://dbttherapy.com/dbt-radical-acceptance.html
3. I've noticed that what happens to me isn't as important as what I tell myself about what has happened to me. We all come up with stories about ourselves and our lives. They aren't necessarily true, but we believe our stories as if they're reality. I've found that if I can change the story - or at least challenge it - I may make myself feel better about a given situation.
Narratives in which you're the victim or helpless in the face of your trouble will tend to weaken you. I'm a single mother, for example. I've never been married. I have two sons, one biological and one adopted. When my older (bio) son was very young, I fell into the role of single mom. That's how I saw myself - part hero, part pathetic victim. Finally I realized that viewing myself this way wasn't helpful. I would feel sorry for myself and think, "How can that person do that to me? I'm a poor single mother." I had to reject that role. It's true I'm a single mother, and it's true that that makes some things very much harder, but taking that as my identity was limiting me. It was hard to shake off that persona, because other people would invite me to step back into it. They would tell me how "brave" I was or comment on how hard it must be. Also there are programs and scholarships for single mothers. There are pluses to accepting that role. But I've learned to be matter-of-fact about it - "Yep, I'm a single mom" - and move on.
One benefit of finding a positive way of explaining this perceptual problem to yourself is that it will likely ease your stress over the situation. And easing your stress will likely decrease the frequency and intensity of the experience. In other words, stressing about it probably makes it worse.
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Note: Now that I re-read what I've written, I see that it isn't a "hodge podge" as I said earlier. It's all of a piece, and it's my general approach to any crap life throws at me: wait and see; learn to live with it and get on with your life; tell yourself a different story about it.
Also I hope it doesn't sound like I'm lecturing or minimizing the problem. That certainly isn't my intent.