A Life Lived Vividly Series: ‘I Thought The Voices Were Normal’ Realising I Had Psychosis

A Life Lived Vividly

I suffer from bipolar disorder, well known for it’s symptoms of mania and depression. What many people don’t realise is that some sufferers also experience psychosis. These could include delusions, auditory, visual and tactile hallucinations. For me, I hear voices. This happens during periods of extreme moods, so when I’m manic or severely depressed. I may hear voices that are comforting or spur on my mania. Sometimes the voices are just a jumble. When I’m depressed, it becomes disturbing. Voices will scream and shout at me, or sneer vindictive threats. You can read my journal entry My Hearing Voices Journal

When I was younger, I thought having someone talk to me in my head was normal. Then, as I grew older, I knew something wasn’t right. I was denial for years. Something like this couldn’t;t happen to me. It just didn’t seem fair. It wasn’t until I stumbled upon an article that explained the symptoms that I began to truly accept this wasn’t right. I sat reading, with tears welling up as the realisation dawned on me; I was experiencing psychosis. I cried for a long time. The idea of telling anyone I had psychosis terrified me. What if they were afraid of me? What if they thought I was dangerous? My fear of being labelled as ‘mad’ or ‘insane’ stopped me from being honest with the people closest to me. I didn’t want to lose friends or have family treat me any differently.

Even as a sufferer my view of psychosis had been skewed by pop culture representations. You were a disturbed, dangerous individual that didn’t fit into society if you heard voices. It couldn’t be further from the truth in my case. I was just an ordinary woman; I was in a long term relationship, I worked, I went out with friends. Yet I felt stigmatised before I even reached out to anybody. I stayed silent for years, only telling my psychiatrist after a year of treatment.

I eventually opened up to my partner. It was an awkward conversation, with many pauses and silences as I struggled to explain myself. Although he initially found it difficult to understand, he was supportive and caring. He could see how upset I was becoming and how much of an internal ordeal I had been through keeping this bottled up inside. He knew all I needed from him was a hug and to hear him say ‘I love you.’ Later, I told my family and they excepted it with an ease I wasn’t expecting. I’ve begun to be open about my experiences on social media and the outpouring of support from friends has been incredible. I am truly lucky to have such open minded family and friends.

I know there and people out there who don’t understand some that are scared of psychosis. If these people opened themselves up and had a genuine discussion with someone like me they wouldn’t be afraid. Psychosis doesn’t equal dangerous . I’ve met people who believe it’s edgy and cool, or use it as a fashion statement. It’s none of those things and isn’t something you should ever wish on yourself. It is debilitating, bewildering and terribly frightening, but with support it can be tackled.

 

What Does ‘Recovery’ Mean?

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The word recovery means very different things to different people. The word is problematic and can ultimately be damaging. When people talk about recovery it marginalises those that can’t.

Some people use the word to describe the process and not an actual milestone. Some see it as having a positive outlook, that they see as a form of recovery. Others actually mean being in a stable place and free from mental illness. ‘Clinical recovery’ is a term many mental health professionals use to describe someone who no longer presents symptoms of their mental illness. I think many people think of this when we hear the word recovery and this is my main problem with it.

I prefer to say manage rather than recover.

Managing to me signals acceptance. That the person has come to the point where they’re no longer in denial. They’re now willing to find a way to manage the condition they’re faced with. This isn’t a phenomenon categorised just for mental illness, but for many physical health problems. Managing diabetes and other long term illnesses comes with similar challenges.

Ultimately it’s about building something new for myself. 

I can’t go back to who I was before. I don’t recognise that person. For a start, she was a young teenager and without mental illness and its impact I would be an entirely different person. Would I even want to be that person? I have no idea.

If you’re not seen as moving forward, you end up feeling like a failure. There is so much pressure to be better, to be able to work and socialise, to be a productive member of society. The impetus is put on recovery above helping those that it isn’t feasible for. It’s this unattainable goal that is set for us that so many with severe and enduring mental illness will fail at. Why isn’t there more support for those that need and want to manage a mental illness?  There’s this idea that we can recover if only we tried hard enough. For some of us it’s an impossibly high standard to measure up to.

I’m not here to be an inspiration. I’m not someone that’s going to miraculously be better and totally stable for the rest of my life. It’s not realistic. I can’t pretend that everything is going to be ok. I can’t pretend to be in some form of recovery, because I’m not, and I don’t think I ever will be. I’m managing bipolar and psychosis and it will also be a part of who I am.  I don’t intend to recover from bipolar and psychosis, because it’s just not an option. This is an illness that I will have for life. It’s severe and chronic and I’ve had to accept that. It’s part of my life. I can be miserable and hate the fact, or I can learn about it, start to understand it and find ways to manage it.

 

What Nobody Tells You About Mania

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As I’ve said before there is more to mania than just feeling good. It’s a complicated symptom of bipolar. When someone asks me “What’s it like to be manic?” I have to really think about it. There’s so much to it, I can’t sum it up in a couple of sentences. It goes through many stages, with different symptoms appearing, disappearing and resurfacing again.

One of the major parts of mania for me is anger. I’m not talking about irritability, like you can have with depression. What I mean is real, intense anger. My partner and I have coined the phrase ‘KatieRage’TM to describe these moments. I turn into an entirely different person, I’m completely unrecognisable.

It’s like a constant itch I can’t scratch. I can’t seem to find any relief from the anger I’m feeling.

I have a scar on my right knuckle from when I punched the wall. I hit it so hard, I left a dent in the bedroom wall. You’d think something unbelievably dramatic had happened to make me do that wouldn’t you? In reality I’d found out I didn’t get the day off work, so I couldn’t go to a party. That’s it. I get stuck in a loop of anger. One little thing will trigger it and then, I can’t move on from it. It just keeps going around and around in my head, until I found an outlet for it.

Delusional thinking can be another aspect of mania. I’ll believe I’m the most important person in the room. Actually I’ll know I’m the smartest, most valuable person on the planet. Anyone that disagrees with me is wrong. Anyone that calls me out is an idiot. Even when the right answer is staring me in the face I won’t believe it. I have to be right, because nothing else would make sense.

The anger leaks through to my delusional thinking. Because I feel that I can do no wrong, when I see people doing something differently to me, or not listening to my opinions, it makes me extremely angry. I feel like there is a tremendous pressure in my head that can only be released by me screaming, shouting, ranting and raving.

Along with delusional thinking, people with mania may also see, hear or feel things that aren’t really there. I’ll hear voices that are sometimes comforting, but mostly they drive my manic behaviours. They push me to take risks and do things I wouldn’t normally do.

Overspending. Not “Whoops I lost track of how much I spent on Saturday night” I mean serious, crippling debt. Making the choice between the gas meter and food, sort of debt. Bailiffs at the door kind of debt.

It’s a compulsion I can’t control. I know I don’t have enough money to cover my spending, but I don’t think about the consequences. Mania makes me believe that everything will sort itself out, that it doesn’t matter.

As a young person with bipolar, I was free to collect as many credit and store cards as I wanted. At one point I had four credit cards and three store cards, all spent to their credit limit. I’m still paying them off years later. I got to the point when I would regularly go beyond my overdraft limit and had literally nothing to fall back on.

Mania varies for everyone that experiences it, but for each individual it’s a complex set of symptoms. Listen to people’s experiences of mania and ask how you can support them. Whether it’s keeping an eye on significant changes to their behaviour, or their spending, small gestures can make a positive impact.

 

 

A Life Lived Vividly Series – Psychotic Doesn’t Equal Dangerous

A Life Lived Vividly

Evil

Nasty

Freak

Bitch

Jealous

Dangerous

These are all words that people relate to psychosis. We all need to stop using it as a derogatory term. So often I hear people described as psychotic when they’re being cruel, or acting unpredictably. Recently I saw someone on twitter describing an ex as a ‘psychotic nazi.’ Politicians, especially a certain orange American one are constantly being described as psychotic. It’s lazy and ignorant to use a mental illness to negatively describe someone.

Psychosis is a mental health condition that makes you feel;

Scared

Confused

Vulnerable

Alone

I have psychosis. I hear things that aren’t really there. I’m a danger to myself when I hear voices. Those living with hallucinations and delusions are some of the most vulnerable in society. Feeling detached from reality and not being sure what you’re seeing or hearing is real can be terrifying.

Once I’d just turned the lights off and got into bed. Out of nowhere, I heard a voice, as if someone was speaking right into my ear. The voice whispered in a slow, assured tone,

“I see you.” I sat straight up in bed, my heart thudding in my chest. I couldn’t move, I felt paralysed with fear. I couldn’t sleep for the rest of the night. I couldn’t calm down and kept hearing that voice whisper in my ear. Even now when someone says that phrase I’m transported back to that night and I feel deeply uncomfortable.

People with psychosis are far more likely to hurt themselves than others. According to Time To Change   

‘Over a third of the public think people with a mental health problem are likely to be violent.’

Psychosis doesn’t make you a ‘psycho’. It doesn’t make you a freak. It doesn’t mean you’re scary. It doesn’t mean you’re dangerous.

How do you think it makes those feel that have psychosis to keep hearing the word used to describe murderers and violent criminals? Hearing it in tag lines for horror films and descriptions for Halloween costumes? It hurts. It makes a tiny piece of you feel that maybe you’re actually evil and dangerous, because you’ve heard it so many times.

I’m in a place now where I understand my condition, and I’m learning to manage it. It wasn’t always this way and for me and many others like me I was terrified of opening up about my experiences for years.

Too many people mix up the meaning of psychosis with other disorders. They use the term psychopath to describe those with psychosis. They aren’t the same thing. Psychosis means a person will hear, see or feel things that aren’t really there, or a combination of these. It doesn’t mean you’re going to go hurt anyone.

We’re ill not dangerous. We deserve compassion, understanding and to be listened to without judgement. Please think about the language you use and how harmful it can be. Your words can cause more harm than you realise. They could cause someone to remain silent and not look for help that they desperately need.

The Problem With “I’m Fine!” When Really We’re Not

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We all do it. We say this even when we’re not ok. Someone casually asks,

“Hey, how are you?” and we say,

“I’m fine!” and that’s it.

Why do we do this?

To be polite. We don’t want to make the other person feel awkward or embarrassed. Sometimes it’s something people ask how you are as an ice breaker, to get a conversation moving. We believe they aren’t really expecting a detailed response, because they have an ulterior motive for talking to us.

It’s a knee jerk reaction. We say it without even thinking. We’ve said it hundreds of times before and now it’s become second nature. Even if we want to say no, I’m not fine, we’ve said it already and feel like we can’t backtrack.

We feel rushed. Life often feels like it’s rushing by, and our days feel full to the brim. It’s the same with our conversations. Everyone is in such a hurry to get to their point, to say what needs to be said, they don’t stop and take time to really talk. But most importantly, we don’t always feel like we will be listened to.

We’re conditioned to say it. Everyone reacts the same way to the same question. It’s almost seen as improper to reply in any other way. We’ve grown up hearing it. Our parents said it as we were growing up. Our friends say it. Our colleagues say it. We overhear it in public. Because we’ve heard it again and again, by so many different people, there seems like there’s no other reply to make.

All of these reasons are there for one reason only. The F word; Fear

We fear what someone will think if we’re honest. We’re worried about the reaction we’ll get. The stigma attached to feeling unwell mentally means we hide our true feelings. We’re scared that the person who asked the question will not take us seriously, will judge us, will think we’re weak, or simply not care. In that split second these thoughts circle our minds and we answer how we always do.

I don’t want people to feel guilty for saying “I’m fine.” I don’t want mentally unwell people to feel the weight of having to change their behaviour. It’s up to both sides to change the course of the conversation.

Asking how someone is isn’t a simple question. No one is just ‘fine.’ So we shouldn’t expect that answer and should answer that question honestly and openly. I’ve spoken on the blog about self honesty before, which is part of what we need to do to be honest with others.

“Actually I’m not ok.”

“Honestly I’m struggling at the moment.”

“Life’s tough right now.”

When you’re asking how someone is, really mean it. Sit down with them, over a drink or a meal so they feel that you’re present in the conversation. Build up to it. Don’t just blurt out “How are you?” If you’ve noticed a change in them recently start with that.

“I’ve noticed you’ve been quieter recently”

“I’ve been a bit worried about you”

“I thought it would be good to have a catch up.”

Time To Change are running a simple yet powerful campaign encouraging people to ask twice. Asking someone how they are and if they respond with they’re ok, ask them again. It shows you actually want to have a meaningful conversation with them. You’re not rushing them, you’re not waiting for your turn to speak.

Have that conversation, be honest and frank about how you’re feeling. For both sides it will make a difference.

 

 

 

 

“Why Are You Walking On Eggshells?” How I Began To Recognise Manic Anger

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I saw my parents today. They came over to my flat and I made them coffee. We had a catch up and giggled at my Mum attempting to play video games.

We moved on to how well I’ve been coping recently. They told me they were so happy to see me stable and well. Then they told me what they didn’t miss about me being ill. The mania and what it often leads to; anger. They don’t hold back my Mum and Dad. They tell me how it is. Although, it’s been a long road to get to this point.

My family and partner used to creep around me when I was manic. They didn’t want to say anything that would make me lose my temper and really, just about everything did.

I used to be fully aware that everyone around me was scared to call me out on my behaviour. The problem when I’m manic is that I’m delusional and believe that whatever I do and say is right and justified. No one can tell me otherwise. Knowing they were too worried to say anything to me riled me up even more. It made me feel like a freak, someone that needed fixing and I hated that idea.

I’ve learnt to recognise it. Here’s how:

One of the main ways I’ve done it is making sure my family and friends call me out on my behaviour. I don’t mean confront me, or make negative statements. They tell me my anger or behaviour isn’t normal for me (normal for me, because there’s no such thing as normal) and I should take a step back and think about how my actions are hurting others.

The problem with this is when I’m manic I can’t be reasoned with. Everyone is wrong. There’s nothing wrong with me. I can’t see through my behaviour. There’s no voice telling me to stop or behave. No usual voice of reason we all have that says,

“Should you really do/say that?”

I’ve learnt to rely on my partner and family to be that voice of reason.

When I’m in the midst of bipolar anger there’s no point telling me to calm down. Or to explain anything really, it just doesn’t get through to me. So I ask people to tell me when I’m more stable how out of control I was. Then I’m in the mindset to say I’m sorry and reflect.

They know I need help at those points. I won’t realise it, but my loved ones do. A support system is so important to have. They keep me grounded in reality when otherwise my world would unravel.

Mind Media Awards 2018 – Shortlisted, ME?!

Last night I was checking my emails and a message popped up. It said ‘Mind Media Award Shortlist’ I was fully expecting a resounding,

“Thank you, but unfortunately..” response, which is pretty much the story of my life.

Then I clicked in and it said,

“Congratulations!”

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I screamed out loud. Jumped up and down in the middle of the lounge. Then I sat down and read the rest of the email.

“What the actual fuck!” That was all I could think. I could feel myself shaking. I could feel the tears coming, and I didn’t fight them.

I’ve felt like a failure for so long. I dropped out of Uni. I stormed out of college. I left a fantastic job that I adored and was genuinely good at. I reached my 30th birthday feeling utterly directionless. All because of my mental health issues. I’ve doubted myself countless times.

Now though having a mental illness and writing about it candidly and honestly has positively impacted my life. Knowing my words have been recognised and most importantly have reached and helped people has made me feel so proud. The proudest I’ve ever felt in my life.

Here’s a mega thank you to everyone who reads and follows this blog, I genuinely appreciate you all. Your likes and comments have inspired me to keep writing, when I doubted my blog was worth it.

So many with mental health issues can relate to feeling worthless, a failure. Always keep going, you never know what’s around the corner x

 

Writing Is My Therapy

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Writing has always been an important part of my life. I remember filling notebook after notebook with reams of ideas and stories as a kid. Writing was my escape. As I got older I continued to write and it became a release from the depression that had suddenly manifested into my life. I even decided to go to University to study creative writing.

As an adult, I’ve had many struggles with mental illness. The symptoms of bipolar ran my life and my attempts to control the highs and lows were in vain.

I began to write, but this time, it began as a journal. I’d never kept a diary before. I just started to write, and soon everything was laid out. How much I’d been struggling, how guilty, helpless and ashamed I felt. it helped me immensely. I felt a release to see all these thoughts that I’d bottled up committed to paper.

Writing became my own private therapy.

I’ve had therapy, CBT (Cognitive Behavioural Therapy) a couple of times. The first time round it really helped. I went to the sessions to help me deal with panic attacks. I learnt some important techniques and a new way of thinking about the experience. I use them to help me deal with nighttime panic attacks . The panic attacks subsided afterwards, and now I very rarely have one, maybe only once a year.

My second experience of CBT was not so positive. It wasn’t long after I’d been diagnosed with bipolar disorder. I was offered group therapy and wanting to know more about the condition, and share experiences with others, I said yes. The course didn’t help. It was basic, and didn’t teach me anything new about the condition. There was never any time to share our experiences. I still felt alone.

I continued to write, but now I wanted to share what I’d written. I started a blog, this blog. Although now I don’t always write about my personal experiences, writing still helps me.

It gives me focus and a sense of purpose when I’m depressed. It helps me to stay calm and concentrate when I’m manic. It drowns out the voices and helps me process the experience when I’m psychotic.

I’m not in therapy at moment. A lack of therapeutic styles on offer from the NHS means I’d have to seek private therapy. I can’t afford to do that, so my option is talking therapies; that didn’t go well last time

So for now writing will have to be my therapy. I’m sort of ok with that. I’m annoyed that I can’t access actual therapy, but at least I’ve found something in my life that helps me.

 

Mental Illness has Made Me a Stronger Person

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It’s a bold statement and not everyone will agree with it but for me, it’s true. I wouldn’t have dealt with as much adversity if I didn’t have bipolar disorder. I wouldn’t have had to fight my way through difficult times. Still being here after so many years of struggling, is my biggest achievement. One statement I don’t agree with is being labelled as ‘brave’ because I live with mental illness. The idea that I’m stronger despite it I see as a positive and an affirmation that I’m not weak.

I’ve lived with mental illness since I was 14. I’ve had mental illness for longer than I’ve lived without it. It was my Dad that first told me how strong I was. I’d passed all my GCSE’s even though I’d missed six months of school. I had been severely depressed for months. I couldn’t concentrate, I hated myself and had no motivation. I hadn’t understood why I was living and didn’t want to exist any longer. I’d worked so hard to catch up and was determined to pass my GCSE’S. I’d never felt so proud when I got my results. I remember my Dad telling me,

“Katie, you don’t realise how strong you are. To have achieved what you have despite how ill you’ve been is incredible.” He was right, and that statement has stayed with me.

Dealing with stigma and discrimination has made me more thick skinned. I’m not easily ruffled by snide comments or abusive rants directed at me. I can laugh off a comment and I’m always armed with a number of comebacks, ready to go! I’ve been called ‘a nightmare’ and I’ll never find a boyfriend because I have bipolar. You can find my reaction to this and other experiences in the post, Conversations and Experiences of Stigma Against Mental Illness

I’m not as scared of being open about my feelings because of mental illness. It hurts when someone judges me, isn’t sympathetic, or simply doesn’t care. I’ve learnt this is going to happen. It’s unfortunate, but stigma exists and I will encounter it, especially as open as I am online. I’m able to brush it off now. Not everyone will agree with what I have to say, but you know what? I don’t really care. There will always be people that disagree and I’ll listen to their comments, as long as they’re constructive.

I know I’m not a weak minded person. I’m actually more resilient because of mental illness. I’ve battled my own mind countless times and won. Life happens, shit happens and I feel more than capable to deal with it all. Bipolar may scupper my efforts sometimes, but I’m strong enough to acknowledge when I need help.

To others struggling, I truly believe that you’re stronger than you know. You wake up everyday and keep going despite the traps and obstacles your mind sets for you. Every time you talk about mental illness, you’re educating others and fighting back against stigma. Each time you seek help and support, you’re making a huge leap that can often leave you feeling vulnerable and out of control. It’s a sign of strength, not weakness. Everything you’ve done in life so far you’ve made happen in defiance of your illness. Be proud and keep going.

 

Where to Start Talking About Mental Health

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Starting the conversation about mental health can feel overwhelming; but it doesn’t have to be. Someone struggling may need the smallest gesture to pull them through. You have  the tools to save someone’s life, even if you don’t realise it. Here are a few things that you can do to help someone in your life.

  • Ask someone how they’re doing. Simple right? If you have an inkling something isn’t right, really ask them if they’re ok, like you mean it. Like you’re not hoping and wishing for a simple “I’m fine.”
  • Ring or message someone you haven’t heard from for awhile. It could mean they’re  struggling and have isolated themselves. Knowing that someone is thinking of them could be what starts them talking.
  • Listen. So they’ve started talking to you, what do you do now? Listen attentively. Repeat back key phrases and sum up what they’ve told you in your own words. It will show that you’ve heard and understood.
  • Share. Maybe you or someone else in your life has gone through a difficult time? Share that experience so they feel less alone.
  • What can you do to help practically? Maybe they want someone to go with them to a doctors appointment. Maybe they want help cleaning their place or help making a meal.
  • You don’t need to fix them. Someone feeling like they’re in a desperate place doesn’t need to be told to “Take a bath.” “Go for a run.” or “Drink some camomile tea.” We as human beings want to fix problems and sometimes we can’t fix them completely.   If you’re not a medical professional then being there, talking to them and listening are the best things you can do.

It can also be draining to be there for someone struggling, so it’s important to look after yourself so you can be there for them. If you’re extremely worried about someone, it’s important you encourage them to find help. You can encourage them to ring their mental health team if they have one, make a doctor’s appointment, or go to A&E. There are also a number of helplines they can ring if you’re feeling overwhelmed.

UK Helplines 

Samaritans: 116 123

Mind Charity: 0300 123 3393

Anxiety UK: 03444 775 774

CALMzone: 0800 58 58 58

charitynopanic: 0844 967 4848

CharitySANE: 0300 304 7000

Papyrus: 0800 068 4141

Rethink: 0300 5000 927