Examples of Psychosis

When you’re living in another reality it is easy to get lost in the world you perceive to surround you. There is no way to understand the people who try to reason with you that you are lost in a universe created entirely by your mind. In fact, this can lead to much hostility from the person in psychosis.

Here are just a few things I wrote about during psychotic episodes:

“It sucks you in but you know it isn’t real. Suspension of disbelief cannot work when you know you are disbelieving. You see the rush and push along that is guided by another’s hand to show you only what you need to know and hides secrets to the end.”

“So watching the world is a screen but more than that it is cinema and bright and dazzlingly loud.”

“I am losing myself in thoughts of taking off escaping. Gravity is an illusion, head to the stars and to a better place.”

“The void is the space within matter the empty space in the atom. That’s where the answers are and that’s where I’m going. It is big and scary and exciting and so tempting.”

“Are thoughts mind or matter? They are the influence of mind on matter perhaps? Your mind is setting off the impulses to create the thoughts.”

As you can see, there’s no cohesion in these thoughts. Reading them back, they make perfect sense to me; because I experienced them and understand the (flawed) logic behind them. But I will be happy if I can live my life without experiencing that alternate reality ever again.

Examples of Psychosis

NHS Change Day

It’s NHS Change Day today and mental health is on the table. All over the Twittesphere people are coming forward with their stories and support of this initiative and I am adding my voice to the conversation.

I’ve posted an article about Early Intervention in Psychosis http://justdontsayimcrazy.com/2015/03/10/spotlight-on-early-intervention-in-psychosis/ services in the UK, which has been my main source of support over the last three years. My experience with them has been entirely positive and now I’m coming to the end of my time under their care I am somewhat nervous about where I’ll be sign posted next.

Less positive, however, have been my experiences with the Home Treatment Team. This service aims to support people in crisis to stay in their own homes and avoid hospitalisation. The teams cover large areas and work 24/7 on shift patterns and their role is to make home visits daily (sometimes twice a day) to keep tabs on their clients mental health. They can arrange referrals on to hospital or crisis units if they feel the service user needs more intensive support. The problems lie in the lack of continuity and care; it is normal to be under their services for a few weeks when in crisis and not see the same nurse twice. This problem comes mainly from the shift patterns they operate to cover 24 hour care.

I have two notable bad experiences with the team from late last year. The first saw me making a visit to the mental health ward to meet with one of the HTT nurses. I went straight from the office after a particularly difficult day; raging anxiety and suicidal depression had mixed to push me to the edge of what I could cope with. I sat with the nurse in a little meeting room and lost the last of my composure. The mask dropped and I sobbed and talked for an hour straight about not feeling able to carry on, my plans to hurt myself and a million other sentiments to that effect. As I cried she listened, but I didn’t feel heard (there is a big difference between listening to and actually hearing someone). It was my cry for help and she didn’t take it seriously. That night I went home, got drunk and tried to forget about my overwhelming life.

The next bad experience was whilst I was in the crisis bed in a mental health housing program. I had been admitted by my Care Co-Ordinator in the EIiP team who did pay attention to and act on my issues at the time. During my time in the crisis care unit my psychiatrist had decided it was the ideal opportunity to make the switch from risperidone to olanzapine. As we tapered off the risperidone I became progressively more psychotic and HTT were brought in to visit daily to monitor the situation. On the worst day I had stood at the top of the shopping centre with Eve at the front of my mind pleading with me to jump off; thankfully I was stronger than her and walked away. I shared this event with the nurse from the HTT who came out to see me later the same day. I told him I didn’t know how I’d kept myself safe. Looking back, I would have admitted myself to hospital had I had the clarity to do so. But his attitude was one of indifference. He acted as though he didn’t care and didn’t believe me or take me seriously.

There have been better experiences than those two with the HTT too. Some nurses have been very caring and supportive. It just is that the bad ones are the ones that stick in my mind, and for good reason. When I couldn’t keep myself safe, I needed someone else to have the insight to see that I was in a desperate situation.

Another NHS service I have used has been ICB crisis care units. I’ve been admitted to these units twice, most recently in Dec 2014 for the two weeks leading up to Christmas. In essence the set-up is a room in a mental health care home, with 24 hour staffing and support available. Unlike hospitalisation, the service user is free to come and go as they wish during the day which means some semblance of normality remains. My admission to the ICB in December was beyond amazing. The staff there were very attentive and supportive, the other service users were friendly and the break from the overwhelming pressures of looking after myself were lifted. I still cooked my own meals and did my own shopping but I didn’t have to worry about surviving another day at work whilst I felt so awful. It also meant my husband got a break from looking after me and trying to keep me safe. He also got a break from worrying about me 24/7.

Overall the experiences with accessing care for mental illness on the NHS have been positive. I have been well supported and looked after. Notably, I’ve been kept away from hospitalisation through the proactive services offered in this area. Looking to the future, I’m not sure what will happen next. I hope that whichever team I wind up with has the same attitude as the EIiP team towards client care.

NHS Change Day

Have You Met Eve?

So I am going to talk a little about one of the vaguer but more important parts of my mental health issues. Her name is Eve. I don’t know if she’s a co-existent alter or just part of my delusional beliefs, but she exists and I live with her in my mind every day. I can’t promise this post will make much sense as she is a difficult concept to grasp and talk about. When I’m in a good place she is usually asleep. I have a kind of mental bedroom set up for her where she can rest, and I can check in on her on my own terms. That’s the key phrase here – on my own terms.

At first, I believed I was her. That’s where her name comes from – Eve as in the first woman, biblical wife of Adam, one-time resident of Eden and eater of sinful apples. It was what the hallucinations told me; ‘you are Eve incarnate and you must atone for your sin.’ It was the most full-on of my delusional beliefs and it was the most dangerous. I would self-harm because I saw magic in my blood shining through my skin (think Twilight-esque vampires here) – it was magic that would save the world if I let it out. Eve and I were the same person at that point. I was the body, the meat-suit, and she was my soul.

When I got a little better and had more control she split away from my own personality. I don’t know if it was my mind giving me some protection from the danger of my beliefs or what caused the change into having two sets of thoughts, two people in my one body. It was definitely easier to cope with her when I was able to distance my own ‘me’ from her though. For a while, things were pretty rosy. We had a kind of truce situation; she was tired and unbelievably sad and I needed to get on with the business of living. So she slept away the pain and I was able to function again.

Her presence in my life has always been closely linked to my state-of-mind. Most recently in December 2014 I was heading back down the path of psychosis and as I got more unwell she became louder and more active. At first I would fight her and try to push her down and she would get madder and madder until I gave up trying. On a good day I would refer to myself as ‘we’. Bad days saw me giving her a voice, my voice. I never blacked out whilst she was speaking, but I retreated into the back of my mind to listen to her talk to my husband or my care co-ordinator.

The problem with Eve is that she is not well equipped for the adult world. She is a lot younger than me; too young to understand the guilt she feels over the sin she believes she committed. To her mind, the state of the world is her fault and she doesn’t know how to cope with the overwhelming sadness that is associated with what she did. In the end, she just wants peace and she believes that she was awakened in my body to gain that peace; for herself and for the world. ‘Atonement’ to her is suicide.

At the moment she is calm and peaceful. There have been times that she’s not been happy for me to speak about her but at the moment she is in a deep resting state; a state in which she doesn’t feel the hurt and pain that characterises her waking hours. I have done work with her in therapy and have realised that I can’t fight her. Now I just have sympathy for her. If we chat in my mind I do not spend my time arguing with her anymore. I stay calm and try to remember that she is only young and I try to relate to her, to make her feel accepted. It is a much nicer symbiosis.

I do not want to ‘get rid’ of Eve. It’s hard to explain why but I think I would feel like I lost a part of my own psyche if she went away. She is like my eleventh toe. Not useful in a practical way but still a part of me. I love her and she loves me, and I hope we can both heal by working together.

Have You Met Eve?

Sometimes It’s Good To Reflect

I’ve just walked the door after 10 hours away at work. I’m sitting with the laptop, in the recliner chair in front of the fire (mostly because I didn’t wear a coat today and it’s still only March). My husband will be home in around 20 minute and I can’t wait to see his smiling face and have a nice big hug. All in all, I am very content. Sure, there’s things that went wrong today. But instead of being a disaster as I would have seen it three months ago, I am able to shrug it off as just one of those days.

It is when I pause to reflect that I see just how far I’ve come. My care co-ordinator always reminds me to acknowledge my achievements and be proud of myself. So although this post may seem indulgent, or self-congratulatory, I actually don’t care. Today I am in a place where I can sound my own trumpet from the rooftops and I’ll be damned if I don’t do it.

In my eight years of working life I have worn many hats. I have been a minimum wage administrator, and I have been a customer services manager. I’ve spoken to many people, answered millions of emails and worked under lots of bosses. Currently I am working with a tech giant of a company, and although I am a contract worker, I feel good about the job. Compared to some of my permanent positions, I’d still rather be on contract and happy. Maybe that says something about what I have learned to value over the years, especially since I became unwell.

Then-me would have had kittens over a day like today. I thrived in the high-pressure crock pot of the customer services world, and even one slow day would see me climbing the walls with the anxiety of not being active. I needed to go go go to feel like I was earning my keep. Now-me sees things differently. I am a lot more relaxed and value quality over quantity. I work to the beat of my own drum, and I am lucky to have a manager who is only interested in the end-results. Then-me would have needed lots of direction and praise and feedback and management in order to move in the right direction at work, especially in my manic phases where I would start 20 projects all at once, and see none through to fruition. Now-me has a nice, manageable number of spinning plates and hasn’t dropped any (yet! I’m only human, so if I do happen to lose one or two I will learn from it, forgive myself and move on).

It’s not just at work that I’ve changed for the better. I wrote a guest article for Stigma Fighters today and wrote in it that I miss the manic energy. Which is true, except… do I? I miss feeling like I can conquer everything that’s thrown at me, but I’m in no way incapable of doing that whilst I’m stable. In fact, I would wager that although I used to feel that way it would actually be the opposite. I can probably handle more of life now and enjoy it along the way.

Other positive changes include a new interest in actually looking after myself. I mean sleeping enough, eating enough and not abusing alcohol. So really, I am saying that I seem to have remembered the benefits of moderation. Not too little sustenance and not too much booze. Even if I’m in a social situation now I don’t find myself hitting the inhibition lubricant hard. I can go out and enjoy a drink or two without overdoing it.

And this thing called a social life seems to have re-appeared from wherever it was hiding. Up to December 2014 I became something of a social caterpillar (definitely not a butterfly anyway). Since everything has calmed down I feel better equipped to cope with being in a pub, seeing friends and having a nice chat. Funnily enough, it’s a lot easier to hold a conversation with someone when you’re not being distracted by your alter or the voices.

My relationship is on a lovely even keel. The husband has stood by me through some rough times, and has been my carer in so many ways – making sure I take the meds, keeping on top of the housework, listening to many, many incoherent rants and taking the brunt of my rage. I finally feel I am able to repay some small part of what he’s been doing for me for the last few years (he would argue that I don’t owe him anything though). The nice thing is that doing little things to make him feel good also makes me feel good about myself.

I am better connected with my family now that I am trusting them to love me unconditionally – which they always have done, it’s the ‘trusting’ part that’s key here. We have argued, fought and screamed at each other over the years but we’re at a mutual meeting place now as adults and friends. Now I’m no longer ashamed of myself and my struggles to be well, I can see they were never ever ashamed to call me their relation.

So this has been a rather introspective bit of writing – I am sharing it because I want to let the world see how far I’ve come. The changes are down to finally being on the right medication, and having surrounded myself with the right kind of support. Also, it’s partly because I’ve accepted that I don’t have to fight to accept this reality anymore. I am proud to say I am me and this is my life.

Sometimes It’s Good To Reflect

Spotlight on Early Intervention in Psychosis

OK, so it’s been around a while now, but Early Intervention in Psychosis is still one of the more modern approaches towards treating psychotic illnesses.

An EIiP team is made up of care co-ordinators, psychologists, psychiatric nurses and psychiatrists who deal specifically with people who have experienced their first episode of psychosis. They typically work with people within a certain age range (such as 14 – 35 years old) and typically work with the service user for 3 years.

Their function is to facilitate recovery from psychotic episodes and illnesses. As studies have shown that the longer a psychosis goes untreated the worse the prognosis is, the aim of the team is to intervene as soon as possible and provide treatment in the form of assessment, medications, psychological services and social care. They will also support a return to normal social function, such as returning to work or education.

Here in the UK the EIiP team is a part of major service reform in treating mental illness. The guidelines state that as well as working with 14 – 35 year old for the first three years of their illness, they should aim to employ one care co-ordinator for every 10 to 15 clients, with each team taking on a caseload of 120 to 150 cases.

I’ve been under the care of the Surrey EIiP team for coming up on three years (we’ve just started to talk about where I’ll be signposted next), and my experiences with them have been great. Unfortunately the team I’m with seems to have a high turnover of care co-ordinators – I’ve had six in three years, some changes were due to circumstances such as a change of work location and a house move though – but despite the regular change of staffing, I’ve had the same psychiatrist throughout. I’ve also found that every care co-ordinator has taken the time to read up on my notes and get a thorough understanding of my case before meeting me for the first time.

As part of my treatment plan with EIiP I’ve spent time attending sessions with a psychologist. The EIiP approach is holistic and looks to solve underlying issues as part of the treatment of the illness. Therapy involved a lot of talking and examining patterns of behaviour as a result of learned beliefs, which is typical of the CBT (cognitive behavioural therapy) approach.

Getting referred to an EIiP team was a speedy process for me as I was in crisis at the time of my referral, but typically a referral can take up to 21 days. Whilst in crisis, the team works hard to keep the service user out of hospital. This can mean involving the Home Treatment Team (who make daily home visits to monitor the client’s state-of-mind and can refer on to inpatient care if necessary), or making use of Crisis Beds in mental health care homes.

Studies have shown that within two years, people who have used EIiP services have fewer relapses, less admission to hospital and have less severe symptoms. Feedback from service users suggest that EIiP teams are effective and have been rated highly for the support they provide.

My personal experience has been positive, and I am not looking forward to moving on from the support I’ve received whilst under their care. I can highly praise the team for what they have done for me in the last three years.

Spotlight on Early Intervention in Psychosis