Story by Selina
My depersonalisation came on very very gradually over several years. Because of this, I don't have a way to establish what 'normal' was for me. I do remember my experience of life once being vivid, feeling that things and people really existed beyond being two-dimensional shadows, being able to picture things that I was not looking at so that I could conjure up a sense of being in a world, being able to feel a difference between the significance of what is past and what is present, and feeling that I wasn't forgetting terribly important things ( I have an overwhelming sense of forgetting, without knowing what it is I have forgotten. Every now and again I remember something, proving that the sense of forgetting was right. For example, remembering why people cry. Before, I couldn't fathom what it meant. My theory about this is that we know some 'facts' in an 'existential' way rather than intellectually, but they are also not really in our physical memory either. The existential 'facts' don't need to be stored in our strictly factual memory, nor are they in our physical memory. These are the kind of memories I seem to have lost: facts about relationships, about people and their emotions, or strange things like how to do certain practical jobs. Without doubt the worst thing of all about depersonalisation is not being able to remember how much I can trust people, both in general and specifically. At least you can rely a lot on habits, but habits need to be reviewed, particularly when you weren't grown up when you began to have depersonalisation. )
I have always suffered from anxiety and depression, and this became very severe at the same time as my depersonalisation seems to have started. The depersonalisation has been continuous, and so, too, has my severe depression, although I cope with them both much much better than I did, now. It is curious how almost all of us seem to suffer from depression and anxiety as well as depersonalistaion. There has to be a connection, it seems.
I spent several years living for the hope of a recovery and treating my present life as a sort of purgatory, a limbo where I was waiting for my life to begin again, while trying every possible avenue of treatment. I don't see how we can really escape that sense of being deprived of real life - it doesn't feel as if I am alive any more. Whether it's physically true ore not, I am existing in another realm where life is not life any more. It isn't purely because of feeling terrible - for me it is because even the thoughts I might have about how I am now experiencing a dream state are themselves unreal - there is simply no escape, no way to imagine anything different, except having factual memories of things once having seemed real, and these memories, too, being unreal. I do have the sense, that if I could only remember as a real memory, the horror that pervades everything would instantly lose its power and I would be able not to take the situation so seriously. I would still be grieving bitterly for the loss of my real life, though.
After I found every hopeful treatment turn into a disappointment, I eventually made a decision to assume that my illness was 'sent' to me as a way of making me spiritually stronger in some way, and that it was important to put energy into quality of life, and decided to believe that I was equal to my illness - that I could laugh in the face of it. I cannot describe how enormous that leap was,(and still is ) and how much courage it takes all the time to maintain this attitude. So many instincts are screaming LOOK FOR HELP! PLEAD TO BE TAKEN CARE OF! RUN AWAY! HIDE AND DON'T TALK! I would have taken those options if I could, though. In the new phase, I weaned myself off unhealthy food, took up running, learned to dance, and engaged in new relationships, all of which took a huge effort of will because of all my instincts screaming 'don't move' and because of the terrible exhaustion. I trained in a teaching method that I find inspiring , did sufi meditation, went to beautiful concerts.... None of this has altered even slightly my sense of grief and deprivation at having a brain that isn't working properly. (Just now I read some other people's stories and wept. I think seeing other people's descriptions gives me a stronger sense of the fact that I have an illness rather than there not actually being another reality out there. Factually, I know that it is there, but it feels hard to believe in. Another very good thing is encountering people who know what life is for me. It reduces the terrible loneliness of knowing that nobody understands or acknowledges what your life is, and the awful fear of being labelled mad. I feel that if met any of you I would want to throw my arms around you. ). But I almost feel as if I have a kind of special strength now, and I feel strangely fulfilled by that. I am astonished at my ability to smile, express love through my body, dance, play music. It is like smiling in the face of something worse than death. I keep hoping that I don't make some terrible mistake because of not seeing things the way they are, or forgetting something vital. That seems very possible.
I tried many drugs in the beginning, and some of these helped me to cope emotionally with the situation, which was something I was very, very desperate for. At the same time ALL of them made the depersonalisation worse permanently, except for one: I saw a private psychiatrist and gave him a copy of an article about the use of amphetamines in treatment of episodic depersonalisation in the 'sixties. He gave me a small prescription for a week's supply. I went home and, having carefully consulted books to determine whether this would be dangerous, took them all at once, stayed up all night, and felt my terrible mental fatigue alleviated to a helpful degree. The effect continued to the present. I once took illegally obtained 'speed' and this had a similar helpful effect, though you could tell it was not as pure .
I tried many many alternative and conventional treatments that didn't help at all. Some were very 'esoteric' and others more 'scientific'. There are four things I did that partially healed the depersonalisation. I would put their benefits each at about 4%. That doesn't mean that they didn't make a huge improvement to the quality of my life. 1) I saw a Shamanic healer who did a ritual to 'retrieve my soul' and blew on my stomach. I didn't think it would help, and I felt crazy trying it, but a doctor at the Royal Homoeopathic Hospital had recommended him. After the session I felt as if wires in my brain were unscrambling and acquiring normal functioning, The effect has continued to now. 2) I read about a treatment for disturbed 'Assembage Point', given by Jon Whale and Shanti Cole, which was used for people with depression and schizophrenia sometimes with a staggering effect. I felt an intuitive urgency to try this, and did so despite it seeming very bizarre indeed. It made a real difference to my energy and ability to be positive. I don't think I would have coped without the benefits of that treatment. 3) I tried the new treatment combination of citalopram, (an SSRI), and a modern anti- convulsant called lamotrigine. It actually took away some symptoms: I stopped feeling as if I was totally unconnected to my body and as if my body was made of air. I felt I could see colours where before they felt grey and lifeless. Things stopped seeming completely two-dimensional. I didn't feel like a robot, and my voice changed from sounding robotic. I stopped feeling as if everything around me was dancing around in a very disorientating way. Life became bearable and not a moment-to-moment endurance of complete horror and terror. But when I put the dose up to a high level to try and get more benefit, I got other unpleasant effects, and some of the other depersonalisation symptoms got worse. When I stopped taking the medication because even when I reduced the dose again I couldn't get rid of the bad effects, I found that both the positive effects and some of the negative effects still continued - and it has been several years now. One awful result of that medication is that my system seems weaker now, and every time I get ill my depersonalisation seems to get slightly stronger, permanently. It is terrible to realise that the sense of things not being there can get even worse. 4) I followed the Gut and Psychology Syndrome diet described by Dr Natasha Campbell-Mcbride for one year, thereafter cutting out sugar and dairy and white flour. That gave me back some emotions, and made me feel more connections with people. I also felt generally much better physically and mentally.
I send you all my best, best wishes for coping with this terrible illness and finding help.
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