I have schizophrenia and bipolar 1 AMA

[Theodoreb]

Not sure if anyone will be interested but thought I'd post here as my own way of raising awareness about my very stigmatized mental illnesses ask me questions?

@outermongolia I am very biased so my opinion is going to be based on personal opinion and I don't believe counts for everyone. I will not be having a partner firstly because I am vulnerable I tend to attract abusive men so either it's that I'm vulnerable or my choice either way I won't be getting a partner till my dc have left just in case it ends up abusive. Secondly I'm selfish I have my own extreme needs and 3 dc with extreme and very different needs I don't want a partner whose needs I also will have to consider into the mix. Finally with my mania I am frightened of having a partner as if I go manic I tend to do hurtful things so for me single is best although I am sure there are many it works out for just not me.

@Bluewater I would love to attend some support groups and will look into it again as I'm am in a very isolated area which has none available but owing to this pandemic like you say I may be able to join one online.

My advice to anyone with a new diagnosis is not really what will be easy to hear but will be helpful.

First easy enough you have to have a good rapport with your psychiatrist and any cmht member you work with. If you don't get on with someone don't feel bad just request someone else you can't be trusting and opening up about your most personal internal struggles with someone you don't trust.

Second you will probably have been unwell for a long time slowly building up to the point when you became so unwell your path somehow got to diagnosis point. This means a lot of people are used to being unwell when you take your medication it will change you, my advice is you will have most likely spent years unwell so give it a year on medication as we do not like change so that you can honestly compare the two states and make a informed decision about which you want to be medicated or unmedicated. But give both a fair chance first.

Thirdly it takes a couple of years to get medication cocktail correct unless you are exceedingly lucky, try to keep up your strength and remember patience as you will get where you want to be it's just very complicated to treat a issue as serious as bipolar or schizophrenia so have faith if you keep trying you will get there.

Fourth side effects of meds, they arnt nice for anti psychotics and mood stabilizers and benzodiazepines and sleeping tablets they are far worse than even my anti depressant which was bad enough. Just know most will subside and for those that don't you will get used to it and it won't bother you after a while.

Finally don't ever do drugs, some people without mental health problems can use drugs occasionally and just walk away never getting seduced but for someone with a extremely dark mind it becomes a place to hide which leads to dependence and eventually addiction. All drugs even cannabis cause worsening of psychotic mental illnesses for example cannabis can make you trip severely and while at first I agree it does help long term the good feelings go away and paranoia takes over but it's so ingrained in you to smoke that even though it then makes you unwell you will continue to smoke and even defend it.

@shrubbish thank you my dc are aware of my mental illnesses in age appropriate ways as I was mentally scarred by having a mentally ill mum and being kept in the dark now I am aware that I am a little different and they are bound to realize that so I talk about it and encourage them that mental health is nothing to be ashamed or frightened of.

Hi @Theodoreb I've spoken with you on threads before about mental health; I've got Schizoaffective Disorder & Epilepsy.
I take an anti psychotic, anti depressant & 2 anti epileptic drugs.
I feel quite spaced out & get tired easily but I do manage just about to work 3 days a week as an hospital HCA.
I don't have a partner or children sadly & live alone.
I find that if I get tired & stressed it makes me more likely to have hallucinations & paranoia as well as seizures, also I find being with people I don't know well difficult as I get paranoid.

When I get anxious about things I get intrusive thoughts from somewhere telling me to harm people which I would never do.
I've had them a few times recently & fighting them can be scary.

But I don't have symptoms every day like you do which makes it hard for me to believe in my diagnosis & to think why am I bothering with my meds?

It's difficult to decide what to do.

@Terralee of all the posts I've read your post just then is the one I relate to the most.firstly like you I struggle with feeling sleepy and when dc are in school I usually sleep a lot which I hate.

I also have to minimize stress and as a result I am in awe that you are able to hold down a job especially a professional job. I discussed it with my psychiatrist and decided I would never work as the stress causes too many relapses. But I would 100% say stress and anxiety contribute greatly to my psychosis.

I don't like people I won't let new people touch my skin and people think I'm strange I used to go up my friends house and he had lots of people in new people and if I was there people were warned not to touch me as honestly if someone I don't know touches me it creates a extreme reaction either I have a major panic attack or become severely agitated and will get quite nasty telling them not to touch me if they do so again after being told no even once. I don't like new people my paranoia always plays up and my anxiety goes through the roof.

Can I just say even though I have constant symptoms I think it's a part of psychotic disorder to doubt whether you are really unwell as I do that all the time as well not just with my mental health but I have copd and on the good days I wonder what if I'm just imagining it or making a big deal out of nothing then I have a bad day and I'm like maybe I wasn't imagining it. I'm also the same with my back I hurt it in a car crash and having investigations. I think when you've lived a life of psychotic existence where reality is so easily altered it's so easy to doubt yourself and worry that you've either imagined what has happened or down play it or even sometimes question whether you were somehow mistaken.

Please please don't stop your medication I find it very helpful to have a full journal and then when I feel like stopping my tablets as I'm having a good day I read through my bad days and relive in my mind how frightened I was or how many people I hurt especially those that I cared about.

Reach out if you need me but don't ever let your brain delude you into thinking you don't need your meds, do you remember how hard it is to get as serious a diagnosis as bipolar or schizoaffective or schizophrenia? It wouldn't have been given easily if you lose faith in yourself trust in someone else who can remind you that you are not taking those tablets without reason.

In fact if you were normal have you actually seen what psychiatric medication does to a normal person in high doses it's not pretty and believe me when I say if you didn't need your medication you wouldn't be functioning on it or walking or talking or doing anything except be virtually comatose.

What a great thread, a very big thank you to the OP, Theodoreb

I'm wondering what the difference is between being diagnosed as having both Bipolar + Schizophrenia as opposed to being diagnosed with Schizoaffective disorder?

A good friend of mine was diagnosed Schizoaffective many years ago. She goes through good times and bad times.

She lives in a country with great support for MH (an EU country) where her job is there for her even after multiple 6-month long hospitalisations. The hospital is comfortable and she can choose between a single room or twin sharing with another person in the same main ward.

Her main problems include delusions and paranoia. When well, she lives a full life.

My very best wishes to you x

@MrsKypp schizoaffective is a episodal disorder it has all the symptoms of type 1 bipolar which means manic episode, depressive episodes and mixed episodes with I believe (not 100% as not as well informed on schizoaffective) more severe psychosis during mood episodes. Also in addition to bipolar there are episodes of severe psychosis outside of a mood disturbance not sure how long they last think it's about a month.

Schizoaffective also has a depressive only type which is episodes of depression and episodes of schizophrenia but is less common.

Bipolar and schizophrenia means I have constant schizophrenia meaning I experience symptoms every day of schizophrenia ( with your psychiatrist the goal with schizophrenia is to find a balance between medicated levels you can tolerate and function with while keeping psychosis levels low enough to be managed) but I also have episodes when I am also manic or depressed.

Not 100% sure on this but schizophrenia is not just about psychosis sometimes you have what's called word salad when you try to say something but the words come out all jumbled up also episodes of Catatonia often a inappropriate sense of humor (not sure if this I am correct here but I feel very numb and a lack of emotion when schizophrenia symptoms are high but that could be due to anything but I think it is a symptom), what I don't know and I'm hoping someone else can answer for you is if a schizoaffective person experiences the above which are called negative symptoms of schizophrenia during a episode in addition to the positive symptoms most people know of and associate meaning paranoia and psychosis.

Other things I'm not good at which are classed as negative symtoms is quite embarrassing to admit but while I make sure my dc brush their teeth and wash I have no interest in taking care of myself I do not bath unless I have too and I try to force myself to brush my teeth at least often enough to not get picked up on.

When I try to watch tv if it is something new there is too much information for my brain causing me to either become severely withdrawn or psychotic. I usually watch the same things over and over again. Before my first episode when I was 15 I was literally straight As without even trying yet when I had my first episode I found after that that I was unable to learn anything new my focus has deteriorated as has my ability to absorb new information. I still only play the same PlayStation 1 games from my childhood as I cannot learn new games or cope with the new increased graphics.

I like the poster with schizoaffective struggle greatly with personal relationships I do not like new people I do not trust new people and most people find me odd in my ways. If I am hurt I will not cry even though sometimes I would love to cry yet I cannot express my own personal emotions even when on my own. The not wanting to be touched I believe is also a symptom and even as a young child long before I started showing symptoms I would refuse to be cuddled would only cuddle my mum under extreme circumstances and would not cry.

This is also another reason I find relationships hard I am cold with everyone who isn't my dc who the rules do not apply to. I love cuddles from them and in a way overly loving as I have no one else to give it too.

After a act as personal as sex I need to be left alone and not touched for a long time afterwards, I do not do cuddles and sometimes I seem uninterested and like I do not care which is not true I just find it hard to express myself. Even someone I like who again is not my kids or my mum I cannot spend long around before I become irritated and on edge.

These are constant everyday.

@Theodoreb

Many thanks for your very thorough and clear reply.

It's all very complicated by the sounds of it. I mean to distinguish between the types of illness.

I know my friend has an enormous amount of energy, even on medicines that are supposed to make people feel knackered out. She has mania if she doesn't sleep well. Her energy level is astounding (full time job plus extra and still goes to the sports club most days). This must be a manic type thing - I haven't known her get depressed, but wonder whether that is when she goes into hospital.

It all obviously has a huge effect on someone's brain. Interesting how you play things you learned when you were younger because learning now is so hard. It must be really frustrating.

I have heard of word salad. That sounds like a language communication issue doesn't it, where what you think you're saying isn't what your mouth actually says. A disconnect somewhere in the language centre. Thank goodness it's not all the time.

You're great at explaining all of this BTW.

You usually don't see a bipolar person when they are depressed often they just don't leave the house or feel like speaking or it may be that she suffers more manias than depressions.

It frustrates me as once learning was so easy I was so good at everything I took it for granted really and now I cannot even learn how to play a new computer game. Sometimes feel like maybe that intelligence was a complete waste on me I had dreams of becoming a doctor but when I was 15 I had my first schizophrenia activate and spent a year in and out of hospital and after that every time I tried to learn something new I either was unable to take it in or it triggered positive symptoms.

I was only one in my school to get a perfect score on my Shakespeare comprehension about Macbeth and can still read that as it was already learned but struggle with a simple book I haven't read before.

On a good day I will try and read something new and then I can add that to my list do the same with tv but stick to sci fi and fantasy as they have less triggering subjects for me.

My ex husband used to put me down for my continued re watching and re playing of games used to attempt to force me to do new things by putting me down and threatening to get a less boring wife.

but my kids are always happy when I pull the PlayStation out they understand and it doesn't matter to them how many times I replay a game they just love spending time with me. Plus it may seem boring but I have quite a list of games and films I can watch. And I learned a lot of board games which I am still able to play, so we have a lot of fun, but I cannot do all that I would like to do with them sadly but they never ever Made me feel bad for it.

I can talk on forums as it's anonymous and I see it kind of like writing a journal but I could never tell anyone this apart from those very close to me. And only two people other than me know my full story my psychiatrist and my mum. But I'm glad I'm explaining it well.

Sorry replies are mammoth just now ive started talking about it things keep coming into my head I would like to thank everyone who has commented or read as I really would love to increase understanding so there is less fear and also maybe help people who live with these illnesses.

I think I do get negative symptoms as I find it hard to get motivated to shower etc unless I'm actually meeting my friends or going to work.
I used to get really low & depressed but I'm in a high dose of anti depressant, but like I said I do struggle with everyday tasks.

@Theodoreb

Thanks for your brilliant replies - really informative.

I'm so sorry to hear how much it is affecting you, for example preventing you from learning new things. Especially when you remember learning so easily, the difference must feel very noticeable and frustrating.

Not being able to think clearly must be massively disabling. I truly hope you have good support from others and that things stay on the better side for you than the worse.

The evil illness sounds like it destroys so much.

I don't get it why mental illnesses are stigmatised like they sometimes are. I know there are physical ones that are too, and it's not right.

You are right about my friend - I do think she has mania far more than depression. Maybe there are loads of variations within each diagnosis. I imagine there must be.

Hi op. This thread is so interesting.
Where does your illness come from, fo you think? Is it hereditary? Or as a result of trauma?
I’m sorry if I haven’t expressed
that very well.

An insightful and interesting thread OP. Does anyone else in your family have a mental illness?

@MrsKypp thank you very much for your kind words.

@Elouera @lllot05 that's a interesting question my uncle on my mums side had schizophrenia and my uncle on my dads side had bipolar unfortunately both are now dead owing to illness, poor choices and self neglect. The fact is I was born differently all my life I have been what my mum calls unique I never cried even when very small, i always had difficulty being touched even by my mum when I was young before trauma had happened my mum and dad were very protective as I would talk to myself and see things that combined with the not liking being touched raised a lot of questions I heard my first voice when I was 8 however while this was brought on by trauma (my dad became a iv drug addiction and went to prison for armed robbery) but having explored with my psychiatrist the issues were there before. I would always prefer to play alone often appearing very much the same as a child with autism, but I do not have autism it's just that during childhood the illnesses can appear similar. I was never allowed out with friends more than 2 days without a day inside as otherwise I'd become snappy and agitated which would lead to fights.

But my symtoms were put down to my dad and home life. Then when I was 13 I entered into a very abusive dependent relationship that I was much too young for pretty soon I had my first manic episode and would not go home for weeks preferring to stay at my older boyfriends house he was 15 and while both our parents were concerned about us being in a physical relationship so young no one realized how abusive it was, resulting in rape. This is important as while my early trauma did not cause my illnesses as they were already present they decided how my psychosis and illness would manifest. Most of my psychosis centers around either drugs or rape so my childhood decided the way it would decide to effect me but did not cause however I would say it probably made my issues harder to deal with.

When I was 15 I was pregnant through rape by my boyfriend I was going to keep this baby until I found my boyfriend had taken the same drug my dad used I went nuts things got very violent and it resulted in going out into the street where both my mum and his were confronted with the fact of how violent our relationship actually was (not just him I was equally violent as a unmedicated schizophrenic with bipolar, he was later diagnosed with schizophrenia which is probably why even though we were abusive we were also so dependent on each other) our parents desperately tried to split us up on account of me being pregnant. His mum was telling him to constantly beg my forgiveness and my mum was pushing for termination. I had the termination and owing to severe self neglect and self harm (as now my boyfriend wasn't bathing me feeding me and caring for me I couldn't do it and my mental health severely deteriorated I ended up in and out of hospital for a year I was 15 and I got diagnosed wrongly with ptsd as my psychiatrist was lazy and didn't look deep enough then after a year I was doing better had my kids suffered severe manic episode after birth of dc2 and ended up with my bipolar diagnosis. However meds were not eliminating all my symtoms I had a good psychiatrist who realized and took the time to ask difficult questions and look beyond the abuse and trauma and see that the issues were there first. But made worse by the trauma.

Now my support is my psychiatrist instead of having a con like other people I have only a psychiatrist as he prefers to see me regularly and provide all treatments himself and he is brilliant.

Although right now owing to corona virus all appointments have been suspended. My mum also lived with me up until February so decided to move out as I was doing so well on my own.

So unfortunately I am struggling right now as have lost a lot of support but I am managing well and I know I can do this I am ready to live alone and I am strong enough. It was a hard journey getting here and I haven't always been this together it was learned through hard lessons but I am ready.

How old are you OP, sorry if this has already been asked.

Your early years sound very traumatic, I can see how such experiences would shape your illness as it developed.

I can do this I am ready to live alone and I am strong enough

You absolutely are. I hope you're very proud of yourself for how well you cope in the face of such a frightening illness, I know if you were my sister/daughter then I would be incredibly proud of you.

@Onholidayinthehouse thank you so much for your kind words my mum says she is proud of me but I worry how much of a burden I am as I know she has to give me a lot of support.

I am 32 years old, but I plan on sticking round a bit longer at least until my youngest is 18 that's what keeps me going but I do worry about how I'm going to cope when my dc have left and there's no reason for me to do these things. I'm hoping I'll do it so I can stick around see my dc succeed in whatever path they decide in life and maybe be a good nan one day.

I just want to say thank you for your thread and for sharing your experiences. You're an inspiration. I love someone with bipolar 1 who gets psychosis without medication. They are now complying with meds but they are not symptom free. I can't imagine what they go through each day, so it is so helpful for me to have this understanding. Thank you

@Theodoreb I'm glad you're planning on sticking around & your kids will need you at way past 18! I hope you're getting on ok at the moment. I'm a bit (well, very) nervous as been redeployed to a new ward to work tomorrow. I hope the staff (and patients) will all be nice. I have to do it, the alternative is not working basically but its challenging.

@userThenLotsOfNumbers thank you just be patient it takes time to attain stability.

@Terralee

Good luck I'm sure it will be fine let me know how it goes, I can't imagine it's easy working right now so stay safe.

You're welcome Theodoreb.

I do have a question now if it is ok to ask please.

What is the best way of helping someone who is non-compliant with medication? My friend has had bipolar 1 for around 20 years and has a long history of this on and off due to the medication side effects. They are taking other things such as nicotine to help their mood. At the moment, I think they're manic/hypomanic but I haven't said this to them. I'm just checking in with them and asking how they are doing etc. I realise there's probably not much I can do to help but it would be good to get a different perspective.
Thanks so much.

@userThenLotsOfNumbers I'm going to give you advice you probably won't like and certainly won't be easy, but the best way for someone with bipolar to realize they need treatment is too let them fall and hit rock bottom because it's needed to let us feel the pain in order to fight for stability. Then be there to help when they fight for stability.

Sorry know that probably isn't what you want to hear, but it is what I think is best.

Thanks for your honest reply Theodoreb. It's ok, I really appreciate your reply and honestly, you're only telling me what I know deep down. It's hard because this has been going on for so many years now. Thanks again and I hope you are keeping well.

Thank you OP. I'm sorry you are struggling right now.

I have a question - when you say you deteriorated after having each child, how did that manifest? Do you think hormones play a part, or perhaps the stress/tiredness of having a new baby?

@chilloutchick.

Most bipolar s go into a episode of either mania or depression within 24hours of giving birth. It's like post natal depression all hormonal it's just the same really, there are things you can do to minimize the severity but unfortunately my ex husband was like a wet tissue and wouldn't do what I needed so ended up really bad.

Back when I was having my dc I had two cpns, one who specialized in severe mental health and one who usually saw people who suffer with bad post natal mental health issues.

I really needed guest kept to a minimum as on all 3 dc I did go straight into episodes so needed some space but ex husband refused to stop people coming round and eventually my cpn did it for me she asked my mum to stop the visitors as otherwise I was going to end up in mum and baby unit.

So it starts out hormonal but you can treat the severity by reducing stress. I used to be particularly funny over people holding my baby it upset me greatly and stressed me out a great deal yet no one cared really they all just wanted to see babies.

Theodoreb thank you for your honesty. My DD is 16 and was diagnosed with schizophrenia just before her 16th birthday. I have read a few times about how hard it is to get a diagnosis, yet my DD spoke with a therapist for 15 minutes and she came to that diagnosis. She has never had any outbursts or episodes, never hospitalised or anything. I'm in the U.S. so not sure if it's any different. I'm wondering if maybe the therapist asked the right questions to get to that conclusion or if she was jumping to conclusions.

I'm pretty sure she has depression of some level, losing my dad was hard on her and she wasn't able to say goodbye (he was still in the UK). I also think her friends play a big part on how she is. She's more herself during this lockdown, yet is more easily upset when hanging around her friends all the time. Does any of that sound familiar to you? (As far as friends and outside influences go).

The therapist did say that schizophrenia can be a result of low B3 so she's taking Niacinamide to supplement, but that's it right now. Her regular doctor did order blood tests to check her vitamin levels and it was normal, but she's also taking the supplement, so it's hard to say. Have you heard of anything like that? This is still all so new to me, so I'm grateful you're able to open up and answer these tough questions.