A day in the life of experiencing psychosis - script written for short film production 2012
A day in the life of experiencing Psychosis.pdf
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A parents' perspective
Moving to a new country is, at best, not for the feint-hearted. But we did it in 2004, and brought our youngest child, a lovely strong but stubborn daughter, along…then 17.
After a year or so, we slowly realised that she has changed radically, and not for the best. She became irrational, she drank heavily, drugs were involved, there were no morals, and erratic and irresponsible behaviour was the norm. This got steadily worse (she was in London working at the time), and we were settled in the countryside. Eventually after 2 years, we went to fetch her and she came to live with us. We still thought it was just teenage growing up stuff, and that she needed a firm hand to help her pull herself together.
We then suddenly realised that something was horribly wrong. The hallucinations and nightmares were scary to say the least. One could not talk to her without her shouting and swearing at us, she was totally irrational and irresponsible, and we were looking after her day and night, always waiting for the phone call with bad news. We could not sleep, we were very stressed and our own relationship was suffering. We could not handle her or the situation on our own any longer, and we called in the Mental Health Team.
We were very lucky, as our town has a wonderful team, and they immediately observed her and set the ball rolling towards the support and meds she needed. This was the beginning of the very long road of trial and error, and the end is not yet in sight. We initially thought she was bipolar, but it was eventually clear that this was a case of psychotic behaviour. Every psychosis case is different, I learnt, and it took us a long time to at least get the basics right. Incredible damage was done in our relationship with her initially, but with loving care and support from us (it was not easy), and the incredible support from the team weekly (sometimes daily), she is now a lovely young lady with impeccable manners, soft spoken and well behaved, and I have, after many many years, my daughter back.
We could not have done it alone. You cannot do it alone. It is too hard.The meds takes years to sort out, and she is still not completely happy with hers now. All of them have scary side effects, but it is absolutely necessary in order to try and have a normal life. I was lucky to have met some mums with this nightmare in their lives, and it was good to realise that I was not alone. It helped a lot, as one feels that you are alone in this and the stress (and sadness) is huge. She can still not work full time, and she unfortunately finds a lot of prejudice in the workplace towards mental health, which does not help the situation. Money is also always a problem, because when she loses her job (and this happens all the time), she has no income. For the parents, this is another stressful situation.
We are so very proud of her today. She became very knowledgeable about her condition, and approaches it open minded and realistic. She knows what her triggers are, she tries to avoid them, she has coping strategies that helps a lot, she is open about it all, and the past is a distant memory. She is getting better every day, she is a beautiful and talented girl, and we are certain that an amazing life awaits her. We love her and believe in her. Well done, my darling!
- Written by my mother, 2012 -
Sleep easy, rest your weary eyes,
lay gently down your soul to rest, sleep easy my love...
Breathe easy, as night has settled,
you are safe and warm, breathe easy my love...
For listen there, my love... Listen there...
We are graced with silence...
Like a lovers gentle lips caress
the silence soothes my ears...
Calm and quiet...
My body pulses with pure euphoria from this magic in life...
It is an invisible wall of silence, yet visible to the touch...
I feel this silence... with my mind...
It soothes and calms, and tingles my head, my eyes, my face...
I push this silence out, further and further from me...
From my bed, out the window, into the street,
into the hills, to the stars and the universe above...
Deep inside my mind I feel the energy soften
and draw in deeper and deeper...
Until it is the slightest of sensations...
Softly humming with its own distilled frequency,
its own energy...
Do not move, hold still! Do not move...
I want to cherish it, savour it...
Lie still and wait with me,
dawn will be spreading its shadows across the night sky soon...
Oh, timely devise of silence...
I would gladly give all the hours I possess
to stretch this final hour for eternity...
forever in life...
- 8 September 2012 -
"Dad! DAD!" I yelled, beckoning to my father, standing in the doorway to my room. "Come here..." I say, excited. My father slowly gets up off the couch and walks over to me, follows me inside the room, curiously asking "What is it?".
"Come here, come sit here" I beckon to my chair in front of my laptop at my desk. He sits down, expectantly looking at me, a frown wrinkled between his brows. "Type..." I nudge to him. He shakes his head, “What?”… “Type” I nudge him… He shakes his head and leans over my laptop and starts typing the words: 'I do not know how this works...'
He looks at me, I look at him, I smile, a big smile spreading across my lips, he smiles along with me and gets up and walks out of my room, to resume his place on the couch in the living room, with a slight shake of his head...
A simple moment in my memory, with my father, whom I love very much, during a very psychotic time in my life. To be able to explain to anyone who is not crazy, that at this time this happened I was having a telepathy induction via my laptop into the 'world of thinking minds' with my parents, my lover and his mother and sister... is well...crazy! Much more than knowing this was crazy, was the harsh reality of trying to explain it to those I love most... I simply couldn't... Yes, I was totally psychotic. I believed I was going through an induction process via my parents, and my lover's parents to be initiated into the world where people's mind telepathically communicate with each other, this all with a view to 'being with him' eventually.
I remember once sitting, kissing and hugging my laptop screen, convinced that 'he' was going to pop up on a magic little video feed live webcam on the computer screen, and him decadently saying "Gotcha!"... I remember sitting poised on my chair, in front of the laptop, reading to him from a book, convinced he could hear every single word through the laptop...
I remember the "night I received my soul from God"... how I had physically flipped over in my bed, and my eyelid had rolled up and fluttered in the corner, and I, ultimately, received my soul from God that night. I remember hallucinations, seeing a helicopter, a sail boat in like these floating images in my room, they filled my room space around me, and looked very hallucinogenic and real... I remember going outside for a sneaky cigarette, and whilst I was crouched down behind a tree, I felt my lovers face, his features, drop into my face, I felt the familiarity of his features inside my face... I remember my mother, and the first night I prayed, after all this 'magic' was happening, grateful to God and taking on religion... and I heard and saw her voice ripple through the air, in my room, whispers of her voice, in prayer... So real... But this carried on for nights, endless in time, until late hours of the morning, this false reality I was building into… And I couldn’t explain it to anyone, it made me very angry.
In real-life 'we' had a nasty split... Because of the psychosis... and what I was experiencing as the 'unreal'... 'he' was 'real' after all when I saw him... so how do I explain the laptop typing at home with an unreal him? My actions spoke louder than my words, they were for a while... totally crazy... And we had a mean split with misconstrued reasons behind actions... and things just didn't make sense...
My parents came to fetch me in London eventually, things were way beyond my control by that time between us. My dearest parents took me in and tried to pick up my broken pieces, but the anger, caught me unaware and I was caught in an emotional over kill cycle of ... pure anger... It nearly ruined my relationship with my parents.
I did say to my parents, once I realised from the shock of it all, that something was not right, and we approached my GP who made a referral to the Community Mental Health Team (CMHT) Early Intervention in Psychosis.
The support of the CMHT and my Co-ordinator, was an immense help to me. It was so much easier to talk to someone, who for starters, didn't think I was totally crazy, and there was so much that was unexplained to my mother and father, things that I couldn't talk to them about, which I was allowed to open up to with my Co-ordinator. I saw her on a weekly rotation with an STR worker. Without her help, her willing ear to listen to my stories, her support, her suggestions... I would not be where I am today.
I attended anger management therapy and mindfulness soon after through the help of the CMHT throughout 2009 and started Olanzapine medication, increased over a few months to maximum dosage... to see if there would be any relief from my altered states, voices, dreams... reality... I realised what had happened was crazy, and just saw this a 'big trip' in my life... But there was another one in 2010 lasting months, which was about the sensitivity of the bus noises, and hearing screaming in the noise and thinking in the crowds... broadcasting of thoughts, on so much a higher level…
By this time I was on Quetiapine medication, after having tried Abilify (Aripiprazole) on its own… 2011 I put myself in hospital one night, from the ‘anger’… Mindfulness therapy didn’t quite make the ‘anger’ go away… I was angry at how it’s taken charge of my life by then… My unreal reality was the only thing I knew existed day in and day out..
It wasn’t until September that I moved home again, after having lost another job… Employment was hard to hold down… I would have ‘episodes’ which would always leave the employers ‘firing’ me… Some I told about my condition, some not because of the stigma and I ‘wanted the job’.
We finally chose Respirdidone medication, and it was heavenly, it was the first time in years that I could lay in bed and listen to silence… All around me… it’s a year later now, I am still amazed, and phone my mother sometimes, to let her know about this silence… I was on high dosage 4mg, but unfortunately my prolactin level was raised. Luckily my co-ordinator had heard of research being done that if you take Respirdal with Abilify (Aripiprazole) then it keeps the prolactin level lowered – it worked! I had major alleviation from my symptoms, for the first time in years! I still experienced altered realities, but the massive surge of voices and my anger at night, had vanished into this amazing beautiful silence…
- September 2012 -
If I speak with human eloquence and angelic ecstasy but don't love, I'm nothing but the creaking of a rusty gate.
If I speak God's Word with power, revealing all his mysteries and making everything plain as day, and if I have faith that says to a mountain, "Jump", and it jumps, but I don't love, I'm nothing.
If I give everything I own to the poor and even go to the stake to be burned as a martyr, but I don't love, I've gotten nowhere. So, no matter what I say, what I believe, and what I do, I'm bankrupt without love.
Love never gives up.
Love cares more for others than for self.
Love doesn't want what it doesn't have.
Love doesn't strut,
Doesn't have a swelled head,
Doesn't force itself on others,
Isn't always "me first,"
Doesn't fly off the handle,
Doesn't keep score of the sins of others,
Doesn't revel when other grovel,
Takes pleasure in the flowering of the truth,
Puts up with anything,
Trusts God always,
Always looks for the best,
Never looks back,
But keeps going to the end.
Love never dies. Inspired speech will be over some day; praying in tongues will end; understanding will reach its limit. We know only a portion of the truth, and what we say about God is always incomplete. But when the Complete arrives, our incompletes will be canceled.
When I was an infant at my mother's breast, I gurgled and cooed like any infant. When I grew up, I left those infant ways for good.
We don't yet see things clearly. We're squinting in a fog, peering through a mist. But it won't be long before the weather clears and the sun shines bright!
We'll see it all then, see it clearly as God sees us, knowing him directly just as He knows us!
But for right now, until that completeness, we have three things to do to lead us toward that consummation: Trust steadily in God, hope unswervingly, love extravagantly. And the best of all three, is love!
- Extract from the Holy Bible, 2012 -
My poem about love
Love, Oh, Love
You’ve tricked me
Your beauty, vibrant, colourful and sweet
Dreams dared to dream
Your energy, a spark igniting the flame of my soul
But, you’ve tricked me
Why show me all this beauty?
To show me love?
It is indeed, Love
Your voice, makes me feel
Its energy vibrates, it moves, contorts and twists
Yet, fluent, soft
I see it
I feel it
I know it
It is, Love
Why do you trick me?
Into believing, for believing?
Believing in you?
But is it not belief that makes me see this Love
This beauty, of your soul
Your mind’s strength
Love, Oh, Love
You’ve tricked me
For there are more questions than there are answers
But one answer I am sure of
It is, indeed
- December 2012 -
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*This website was last updated December 2018