Falling Through The Gap

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I’ve lived with mental illness for more than half my life. Even so, it’s only been in the past few years where I’ve felt able to talk openly about bipolar, psychosis and bulimia.

It’s everyones responsibility to help people like me find their voice. We shouldn’t have to feel brave for speaking up, we must simply feel able to, without fear of judgement.

Through my blog, I’ve hoped to be a small part of that change. To create a safe place where the difficult, often uncomfortable conversations can be had. Speaking about my experiences of psychosis has been one of the most difficult things I’ve ever had to do, but in the end one of the most rewarding and freeing.

Even though I’m open and encourage others to be, there is a big problem. There’s a lack of support from mental health services. So many people are tirelessly working towards greater understanding of mental illnesses. We are doing our job, but the services are just not available. The government aren’t doing their job in making sure everyone that needs a hospital bed can get one. That everyone who needs therapy can receive it when they need it. Services are reactionary; people fall into crisis before they can get help. People who are suicidal are being turned away.

I’m immensely lucky to have a partner, family and friends who support me unconditionally. My partner and parents have been there when services have let me down. I talk about one such experience I had with mental health crisis care Without them, I would have fallen through the gap in services and with no safety net would’ve been in a desperate situation. There are people out there that don’t have that safety net. They don’t have a support network like I do. This is where services should come in, but at the moment they don’t.

It feels pretty hopeless right now, but there are things you can do. Write to your local MP about your concerns. Support or get involved with charities such as MIND that are trying hard to push through new and updated legislation. When the time comes, vote in the local and general elections, for a party that will support the NHS and mental health services in particular.

Is Mental Illness Your BFF?

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Mental illness can overwhelm us at times. It can dictate our decisions, affect our relationships and stop us from doing the things we enjoy. Sometimes mental illness becomes more than just an illness, it becomes our life. Or to put it another way, our best friend.

It’s an obsession we don’t want. An obsession with our own self loathing. Depression makes you fixate on the worst aspects of yourself. Its like you’re laying in bed at night trying to get to sleep and you find yourself revisiting everything you’ve done that day. Depression does this to me constantly except, it recounts every single thing I have ever done wrong, every embarrassing situation I’ve found myself in. I’ll find myself sitting blankly as these thoughts intrude into my life, scuppering my plans as they paralyse me with fear and sadness.

The obsession continues. The self hate urges me to dredge up all the worst aspects of my personality and fixate on them. That I have a temper, that I take out on authority figures and family. That I can be quiet and intense, which alienates strangers and new people in my life. That I can never finish anything I start, which in turn fulfils the self fulfilling prophecy that I’m a failure. Then my only thoughts are negative;

“I’m worthless”  

“I’m pathetic.”

“I’m a nobody.”

It’s weird how mental illness distorts are thinking, how it morphs into something that becomes so central to our lives. It becomes our friend. A constant companion that we take with us everywhere we go. It comes along to parties, family events, school or work. It’s not silent either; it whispers in our ears and tells us we’re not loved, we’re not capable. It wants to be our best friend, our only friend.

The problem when mental illness is your BFF is how much control it has over us. It will distract us from what we want to do. It will distance us from our family and friends. It wants us to be alone, that’s its goal. So now all we have is them, the illness. It can completely take over our life if we allow it.

It’s important to recognise when this is happening. I talk about mental illness, a lot. I do so because I want to be open about it, and make subjects like psychosis no longer a taboo thing to talk about. When I talk about how I’m feeling in a negative, inward looking way, I need to think about my actions. Am I overthinking, becoming paranoid and fixating on how I’m feeling? Is this encouraging my mental illness to become more central in my life? When this happens I have to stop myself and gain some self awareness.

No-one really wants to be mentally ill. We want to be healthy and stable, but sometimes our mental illness plays tricks on us. It makes us believe we’re deserving of it, and this feeds our relationship with it. We’re all worthy of a best friend. A real one, that supports and encourages us, and one that can tell us we’re loved when mental illness is telling us the opposite.

 

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 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.

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.

 

The Problem With The Term ‘Mental Health’

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I’ve lost my connection to the term ‘Mental Health.’ It means different things to different people, and that’s a problem. I consider myself a mental health blogger, but I’m thinking of changing that. To be honest I’m a mental illness blogger. I’ll explain why.

For some people, myself included, mental health equals mental illness. It’s a term we use to write about our illnesses, to explain and engage with others about what we go through day to day. For others, mental health covers everything to do with the way we think and act. People proclaim,

“We all have mental health!” Which is true, and I have no problem with people discussing their individual experiences. My problem is that vital voices are being drowned out. ‘Mental Health’ has become this huge umbrella of different meanings. The ideas that are more accessible and easier to digest for the general public will undoubtedly receive more attention.

It feels that mental health is becoming more and more synonymous with wellbeing, mindfulness and self care. Again, all great if you struggle occasionally with the stresses of life or have mild mental illness. It’s not for everyone and it certainly isn’t a magic cure. I’m growing more and more concerned that these subjects will shift the idea of what mental illness is, and trivialise it. I don’t need to read anymore articles about mindfulness, I get it, I know what it’s about. I don’t want people to start preaching to me about how if I practised self care and had a hot bubble bath with some aromatherapy candles, I could break out of a manic episode. No, what would do that is a review of my medication and the support of my psychiatrist.

We need voices that talk about bipolar, psychosis, personality disorders and schizophrenia. Voices that have the right platform and are listened to, because these aren’t easy subjects to open up about. It feels terrifying to begin, the real fear of being judged and ridiculed, stigmatised for something you have very little control over. By using the term mental health, these important discussions are being lumped in with articles about adult colouring books and how to meditate. Self help articles in my opinion should not be compared with articles educating about severe mental illness. There is a vast difference in the two.

As an example I recently had a conversation with a friend of a friend. He asked about blogging and I replied that I was a mental health blogger. He instantly started talking to me about how he is sometimes anxious whilst travelling and how he’s managed it through thinking positively. That’s great and I was genuinely pleased for him. When I started talking about what I blog about and how I’ve recently started a series about psychosis I could see his eyes widen. He quickly changed the subject. This is the problem. Anything beyond being anxious on the train was too much for him to handle. By his response, that was what he was expecting and it was because I used the term ‘mental health.’ If I’d said I wrote about mental illness, I think his expectations would have been different.

We need conversations about the underfunding of mental health services in the NHS and to create that link to the general public of why so many people are struggling and ending their lives. We need conversations about how those with severe mental illness are not all dangerous, but are more likely to be the victims of crime. We need conversations about how poverty, housing, being an ethnic minority or part of the LGBT community can have a negative impact on mental health.

Maybe it’s time for a new term, or a shift in how people use them. If you’re writing about general well being, say that. If you’re writing about mental illness, then say that too. Don’t jumble up the two, it’s causing more harm than good.

A Life Lived Vividly Series – The Voices Are My Friends; Mania And Psychosis

A Life Lived Vividly

 

Not everyone realizes that some sufferers of Bipolar Disorder also have psychotic symptoms. These could include delusions, auditory and visual hallucinations. For me, I hear voices. This happens during periods of extreme moods, so when I’m manic or severely depressed. 

During mania, the voices can be comforting. I have many ideas racing through my head during a manic phase, and the voices I hear add to the jumble. They give me ideas and fill me with confidence that then elevates my mood further. I often speak out loud to them and they reply very audibly, as if they were in the room with me. I remember instances when I’d been in my bedroom alone and I would run downstairs extremely excited, like I had just spoken to a friend on the telephone who I hadn’t seen for a while. I’ve had conversations with people where I’ve become distracted or ‘zoned out’ because there is a voice speaking to me. Sometimes I might make a joke that no one understands but myself and the voices, or laughed out loud for seemingly no reason. Over the years the voices have become my friends and I think I would miss them if they were gone. If my mood becomes very elevated I know they will be there and I look forward to hearing them.

When I’m severely depressed I have heard screaming and shouting in my head. It’s often incoherent with a few words and sentences scattered about and all of it incredibly loud. The loudness of it all makes it an extremely intense experience, like being at the cinema with the sound booming all around you. Sometimes if feels directed at me and at other times the shouting feels intrusive, like somebody is ranting and raving at nothing or no one in particular. The worst part of this is not knowing how long it will go on for, and knowing I can’t escape it. It often happens when I’m in bed and can’t sleep, but it has happened during the day too. I’m sat or lying in the dark when the screaming starts. The screaming is constant and then there is a voice shouting “Everyone hates you”, “You’re worthless”. It frightens me immensely. I’ve found myself covering my ears to escape the noise. I’ve curled into a ball and cried on the floor or in bed as the screaming continues. Very occasionally, I hear tapping. It usually happens when I’m extremely irritable, which can happen when I’m depressed or manic. 

When I was younger I thought having someone who talked to me in my head was normal. I know people have conversations out loud to think through a problem, but the difference is they know exactly what the next sentence is going to be. As I’ve got older I’ve realised that my experiences are not the same. Now I find it embarrassing and I don’t like discussing it with anyone.

I have been caught out a couple of times; I was on a train with my partner when I answered a question out loud. He said to me looking confused “Who are you talking to?” I remember turning red and saying “Oh sorry, I thought you asked me a question.” and left it at that. I also felt that if I told anyone about the screaming and shouting they would think I was disturbed and crazy. I’ve tried a few times to reach out to people but I can never seem to articulate exactly how it feels, or even to admit to the problem. I find writing and blogging to be therapeutic and it’s an easier way to explain how I feel. 

At the moment I am taking Lamotrigine a mood stabilizer, and Aripiprazole, an anti psychotic. They have helped balance my moods, giving me stability. It’s not perfect, and I still have manic and depressed phases where I sometimes hear voices. I’m learning more about how to deal with these episodes, such as trying to rationalise what is happening and ignoring it when I feel able to.

Managing Bipolar Disorder can be daunting at first, but there are many tools you can utilise:

  • Find support as soon as possible.  At appointments with your Doctor, try to be confident and assertive, to ensure you receive the support you need. This can be incredibly difficult when you’re ill, so take a family member or close friend with you who understands your illness. 
  • If you have psychotic symptoms, it’s important to be able to stabilize your moods. When stable, the symptoms should subside. 
  • Become an expert on your illness. The more you know, the more you will understand and find solutions to combat Bipolar. 
  • Find a Bipolar support group near you, or online. Hearing other people’s experiences and struggles, and how they have overcome them can be inspiring and informative. They are often a great resource to find advice. 

 

A Life Lived Vividly Series – I Can Do Anything! Delusional Thinking And Me

A Life Lived Vividly

I live with bipolar disorder, but also have symptoms of psychosis, which includes delusional thinking. I describe what delusions are in the post A Life Lived Vividly Series – What Is Psychosis?

When I’m manic I experience delusions. I think I can do anything. I have what’s called delusions of grandeur, where I believe I’m better than everyone else. I will think that I can do no wrong, that I’m always the smartest person in the room. Actually it’s more than that. I’ll truly believe that only I have all the answers, that I’m the smartest person that ever existed. This type of thinking causes me to react to people irrationally and often aggressively.

“How dare they think they’re better than me!” I will say to myself.

“How can they possibly question me when I have all the answers!”

“Everyone around me is ignorant and stupid. They should all listen to me.”

This isn’t arrogance, or an inflated ego. I don’t believe these things about myself most of the time. In fact, I’m pretty insecure. I’ve written an example of this type of thinking in the post A Story of Self Sabotage

What mania makes me is incredibly confident. Sometimes this confidence turns into delusion. I believe that everything I am creating is like gold dust, and must be seen and shared. I have written reams and reams of notes of ideas for a book, at the time believing them to be the best ideas I’ve ever had. When I look back on them at a later time all I see is scribbled nonsense, a stream of consciousness, misspelled and a jumble of words. It’s like the pages of these notebooks are a reflection of my manic mind. My mind is constantly darting from one idea to another, and never finishing my original point. My mind is distracted by the smallest spark of an idea, and every thought that comes to mind grips my attention. I show everyone what I’ve been working on, with a pride that verges on narcissism. 

Other times when I’m manic, the delusions I encounter put me in danger. A recurring belief is that I can stop traffic. I believe that if I step into a road, every car, bus and lorry will immediately stop and I can walk safely across. I also think that even if this power  becomes faulty in some way, I will not be hurt. I don’t believe there is some greater power watching over me, but instead that I’m so important that I have become invincible. I live in Reading, a busy town with it’s fair share of traffic, so you can imagine the danger I have put myself through. I’ve had many near misses as I’ve walked along busy roads and have stepped out with no fear and no thought for the repercussions. I’ve been run over twice, and had a near miss with a double decker bus. On both occasions of being knocked over, I was extremely lucky not to be seriously hurt and came away with just a few cuts and bruises. Unfortunately, not being hurt on both occasions fuelled my belief that I was invincible.

Everyone experiences delusions in a different way, and no two experiences are the same.  I have learnt to recognise when I’m beginning to show signs of mania, that I’ve written about in the post The Warning Signs of a Manic Episode

Even though I can recognise what’s happening, I’m not always able to stop it and I still have episodes of mania that can lead to me experiencing delusions. Luckily I have a supportive husband and family that can keep a close eye on me and stop me from putting myself in dangerous situations.

Any questions about delusions or want to share your own experience? Then comment below!