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?

Hi OP, how were you diagnosed? Hope you're doing well.

Mimosa I was first misdiagnosed as ptsd at age 15 which was later changed to Bipolar 1 after birth of dc2 8 years ago and suffering post party psychosis which wouldn't go away, then was diagnosed schizophrenic as well 5 years ago as I was suffering paranoia and hallucinations constantly every day despite high levels of medications.

It took a long time to get my diagnosis it certainly wasn't fished out lightly.

What's the difference between schizophrenia and bipolar 1?

Bipolar 1 involves mostly mood disturbances between severe elevated moods called manias and severe depressive episodes and involves minor psychosis generally bipolar psychosis tend to be mild and centre around religous for example believing you are on a mission from god.

Schizophrenia is primarily psychosis which tends to centre around more authoritarian conspiracy paranoia. You tend to hear voices some may even be positive, there are also negative symptoms such as catatonic episodes or word salads when you are unable to communicate as you try to say what's in your mind but the words come out making no sense. With schizophrenia there are no episodes it's constant and personally the most overwhelming symptom is constant paranoia.

In short Bipolar is primarily a episodal mood disturbance disorder where schizophrenia is a constant psychotic dysfunctional disorder.

That's a very clear explanation, OP. Can I ask, do you realise when you are experiencing psychosis or is it only afterwards that you realise that you were ill?

It really depends on the severity and type, now if it's mild then yes I can tell, but once I felt two men try to rape me outside a pub one had blood above his eye and as he grabbed me the blood got all over my head. I was screaming running and got knocked over very mildly. My friend came out and I reached up to touch my head and saw the mans blood on my hand. I could feel it as well I turned to my friend who informed me there was no blood at all, and as I had been psychotic that day we discovered I was psychotic.

However after seeing something impossible it's easier afterwords to realize it's not real, but for a long time about two years after I took medication I believed that everything I saw was real and I was special and other people just couldn't see it.

Took two years to accept I have psychosis but how long it takes to accept the psychosis depends on how long you have been untreated for.

Where a common favorite is to see the girl from the ring (even though I've never seen the film) that is easier afterwords to realize it wasn't real as it's impossible but swing a normal man try to rape you is harder to know if it was real or not. I have probably got many things I think are memories that are not.

I don't have a question but I just wanted to say thank you for taking the time to do this.

Wow you have amazing personal insight!

I have schetzophrenia in my and DHs family and I do worry about whether it shows up in the future or if we pass it to our kids.

Did the symptoms get worse with age ? Looking back, so you think you showed signs early on but no one noticed? Would you say hillucinations were triggered by something?

Wow op! Thank you for sharing your experiences.

Someone I know had schizophrenia for about 17 years but is now symptom free and off medication for almost 4 years.

You mentioned you had kids, may I ask how you have been able to handle this with parenting and if you have a partner, how were they able to support you?

@1forAllnAllfor1 yea my illnesses got worse with age as I believe they get worse without antipsychotics however with antipsychotics it slows down and in some cases stops the degradation. However pregnancy triggered me to have severe episodes getting worse each time I had a child.

@IAmALegendaryHelper

For one year I was extremely unwell so left my dc with my mum as I knew I wasn't fit to look after them and couldn't control my illnesses. I didn't want to leave them but I did what I thought was best for them and I was very unstable refusing medication. Although I would still see them every day I just slept somewhere else.

After a year I began taking my medication and learning better ways to control my illness and slowly had my dc more and more until eventually I had them full time.

That was 4 years ago I returned home and took over my dc care. I have good and bad days more good than bad now. On a bad day I simply increase my meds and will use other things to cope for example I prefer a darker room when I'm suffering psychosis as I feel calmer and see less and generally listen to music.

I take small steps to avoid triggering voices like always speaking on the phone on loud speaker as this is less confusing and I do 100% of my dc care.

I'm sorry. Your experiences sound terrifying. It must be even more frightening to go through something like that and then realise that other people don't accept what you have experienced as real.

You sound incredibly strong and self aware though, Theodoreb. Thank you for telling us what it's like. I'm so pleased you are with your dcs and mum. How much support do you get from social/ health services to make sure you're ok? Does your mum get any support as your carer?

@Halfdonga thank you. My mum gets no support whatsoever sadly there arnt even any support groups she can go to. Yet she is detrimental in my mental health as I trust her which means if I'm suffering paranoia I can ask her and in order to make sure I trust her she tells me honestly whether I should be paranoid even if sometimes I'm unwell and she would prefer I not know she has to tell me the truth in order for me to believe her. Most people with schizophrenia in particular are not as lucky as me and most have no one who will care for them and are abandoned by family. So there is little help availiable for my mum.

Usually people have community psychiatric nurses regularly and psychiatrist every few months, in my case me and my psychiatrist decided to not use psychiatric nurses and instead have a much higher psychiatrist input. I speak to my psychiatrist once a month so we can catch any episodes early and temporarily increase whichever medication is needed. This works better than psychiatric nurses as they are not able to increase my medication as easily and generally are more about talking about how I feel which is not useful for me.

I also decide myself daily what medication is needed that day. Some meds I take every day like anti psychotics and mood stabilizers but then I also take anti depressants which I remove if my mood is elevated and benzodiazepines and strong sleeping tablets how much of those I take depends on the day. Me remaining well means being able to chart my mood and decide daily what I need. A lot of medication I take is highly addictive but I am careful to never abuse them as I am aware I need them and if I abuse them they won't be available to me.

I have received over 2 years of therapy in total including CBT ACAT and psychotherapy. These were given as although my mental illnesses are biological if you have any psychological issues they manifest strongly when biological illnesses are active so it's important to have a tidy mind.

If I want therapy I am able to request it straight away as often episodes themselves are traumatic. I have not had a major episode in 4 years but I still experience mild episodes but I am able to cope.

How can friends/family/partner best support you? I'm asking because I'm in a relationship with someone with bipolar disorder.

What things do you manage to do despite your illness that you are proud of or others may be surprised by?

@serialtester honesty always be honest in a mind which lies to you having someone you can trust to be honest and tell you the truth no matter how hard it may be to hear.

Secondly encourage them to take control of little things like what medication they take, what time they go to bed with a bipolar mind you feel so out of control that once you start controlling the things you can it helps with your psychological well being.

Do not let them use illness as a excuse for bad behavior and make sure you always take care of yourself as you are important and need to be well in order to help.

If they struggle with something try not to do it for them even though often that is easier instead support them to take small steps into doing it for them selves. Which will take longer but long term will lead to independence.

@Easterbuns going swimming every day to swim 60 lengths even though it gives no weight loss reward. Collecting my own medication instead of having it delivered. Doing school run every morning and afternoon. Making sure I take my dc out at least twice a week despite social anxiety and paranoia. Not letting my illness stop me doing what I want for example concerts. Going on holiday even abroad as a single mum with 3 dc with SEN. There are lots but none of this was achieved overnight it took years of fighting to be able to do these things.

Not sure if dc are classed as SEN Or Sn zone has ADHD my middle has ASD and youngest is being investigated for epilepsy I am proud that I am able to juggle their needs which are demanding but I feel my illnesses gives me a advantage as I understand how it feels to think a little differently and realize that sometimes you cannot go straight over the mountain and have to find a way around.

Thanks for posting this OP.

I have a family member with a diagnosis of schizoaffective disorder which I think isn't too dissimilar to your diagnosis (apologies if I'm incorrect)

How well would you say your medication works for you? Or works in general, based off the knowledge you have of antipsychotics.

My loved one is admitted as an inpatient at least twice/three times a year, sadly they do have a history of stopping their medication when it isn't being monitored closely. There have been times when they have been admitted and sworn blind they haven't stopped their medication, but we can never be sure as they live independently and we only see them semi regularly (different area)

If you're on the correct medication and you take it as prescribed, have you found that you remain stable for long periods of time without relapse?

To add, I'm in awe of your insight and ability to care for your children full time despite your illness.

After witnessing my loved one in the grips of psychosis, I have seen how terrifying it is for them. I can't imagine how I would be able to look after my children (one of which has autism) if I were suffering from the same.

Huge respect to you, you sound like a wonderful mum

@Roostermum2 yes it is a similar diagnosis and I will say med compliance is a huge reason for relapse. I take my medication at 8 every night this is important as it means that it will start to wear off at same time. By 9 in the night I feel drowsy I fall asleep once my dc are asleep and often in the middle of the night get up to snack on things whilst being unaware as my anti psychotic makes you so hungry.

at 7:30 in morning when I wake up first thing I have to do is run to the toilet where I'll be sick for a while (one side effect) then I drag myself into living room and right now it feels as though I'm trying to walk through sand every muscle aches and I'm very tired. So and this is not healthy I know I drink one or two energy cans to wake me up. I feel hungry all day but ignore my hunger cravings and only eat one meal a day at night as this has limited my weight gain so I only went from a size 8 to a size 16.

At about 6 I start hearing a ringing in my ear which means my meds are wearing off and I'm starting to become psychotic for the next two hours I start hearing voices which I ignore and seeing things moving again I ignore. The hardest bit is the paranoia I am frightened social services will take my kids and most people think you wouldn't be frightened if you were doing nothing wrong but that's not how paranoia works. I sit there praying to god that social services don't take my dc. Then at 8 I take my meds again and the symptoms go away.

The main reason for stopping medication is the things psychosis say in my case psychosis says I am special and was born to make rapists pay and that not only can I sense them but I can hear their thoughts. However the way I have forced myself to always take my tablets is believing the above is true must sound insane but when my meds ware of I am going to believe that and then I feel like by taking them woman are going to get hurt and raped because I didn't stop it (this only happens on a very bad night) but 4 years ago when I went home I changed my mindset to decide that even if I am really hearing things my dc need me and I cannot function hearing those voices which I believe are others thoughts or angels communicating with me. So I decided I would be selfish and even if it's real I'm going to take my medication as my dc need me stable to look after them. And I cannot function whether they are real or not doesn't matter the anti psychotics stop them which is needed to ensure my dc who are my main priority are ok. So even when I'm bad this thought process means I will take my medication.

That's the only way I was able to form long term med compliance by accepting the psychosis but deciding that even if it is real I'm not doing it.

I am a big advocate for anti psychotic injections as they really do lower the rate of relapse. When I was non compliant with medication I was in and out of hospital doing crazy things but now even if I don't want to I take my meds and I feel them start to wear off 22 hours after taking them then I take them again at exactly 24hrs.

Your an inspiration I have bi polar 1 and apparently traits emotionally unstable personality disorder and wish I functioned as well as it sounds like you do and I only have one son. Hats off to you

@Harrysmum2020 thank you very much for kind words. You will get there it takes time to learn to deal with severe mental illnesses and from what I have heard emotionally unstable disorder mixed with bipolar both of which affect mood is another demon to battle, where both of my illnesses effect psychosis. Much respect to you it takes time.

OP, how do you feel about having a partner? Do you think that your mental health makes it difficult for you to have a relationship and how do you feel about that?

Massive respect to you by the way. You sound so self aware.

OP, huge respect to you and thank you for your insightful responses. I am in awe of what you are achieving.
In terms of support I wondered, could you access a Hearing Voices peer support/ facilitator supported group? Some are being run by Zoom during lockdown so maybe you could access one virtually even if it is not nearby?

If you met someone who was newly diagnosed, what tips could you offer them if they asked?

I really admire your insight and resilience OP, your children are lucky to have such a strong woman as their mother and I imagine they'll be very proud of how you have coped when they're older