Schizoaffective.

Hi @Snuchu

Wow, thank you for sharing, it sounds like a terrible roller coaster especially for somone so young.

How are you going now?

I know that you are a regular member but I am wondering if you have seen this thread here? about another members struggles and recovery from schizoaffective/bipolar, its very inspirational. and a number of people have also written here about their experiences

I wonder if anyone else has any thoughts? @kato, @Sehnsucht, @Tyler77

Hi @Snuchu 🙂

Another Schizoaffective here, welcome to the forums.

In response to relating to your story, that is a tricky question. I can relate to delusions, though mine have never been sensory in the way you describe.

I can relate to the world not effectively responding to, or treating a psychosis. While I was relatively well-responded to and treated when I had my break (an adolescent psychiatric unit, and a very nice one), I have an opposite problem. My biggest struggle is society and medical professionals forever approaching me with a bias that determines I am unwell. I have a number of times as an adult sought specific advice on managing specific struggles, and have been met with "you are deluded". Two examples were when I was asking help with bulimia, another more recently when I disclosed my history to the nurses/obstetrician when having my first hospital appt with my first baby.

In your case, and others, how many times have even I myself walked straight past someone behaving strangely on the streets? How much expectation has been left to you, to know reality from unreality when unwell? Does this seem a sustainable 'treatment plan' to you?

I'd love to know more about what support surrounding yourself is like, now that you have a diagnosis 🙂
When I first got my diagnosis, the first immediate thing it did was absolve me of a criminal charge I faced, of which I was guilty. All had been resolved, and my diagnosis plus the fact I was in treatment when at the time of my offence I wasn't, meant the courts kept it off the record. I think it's still there at a high level, but it has not stopped me travelling overseas, though I've been told America could be a test of that.

So for me, being 'schizoaffective' immediately held some power in my favour, whereas 'severe depression/unknown/eating disorder' diagnosis had not served me well in attempts at schooling prior to this.
Despite the fact that my presentation was the same before and after.
I am often left feeling like we are treated not for our immediate presentation, but treated according to a biased prejudice as to what 'insert MI here' should mean for me/you/us.

So while I can not say I relate a whole lot in respect to fine details, I am here, and I hear you. xxx

@Fancy_Pants, I'm doing very well. I live on my own, have a stressfree small one-day-a-week job... I'd say that's something to be proud of compared to where I've been.

I still hear voices and feel paranoid at times but anxiety is worse than my lingering psychotic symptoms at this time. I suspect my anxiety is mixed with my paranoia because I get triggered easily, even based on what someone say. (Only in real life, online is fine.)

@Sehnsucht, I get the "you're deluded/unwell/psychotic/ill" thing too, and frankly, it's annoying. I've taught myself that hearing voices aren't real at all, and it was easier for me because I'm deaf. The challenge is in where I SEE replaceds, or have a delusion appear. For example, the only reason I had my lastest psychotic episode this year Feburary is because I thought the medication was poisoned by the replaceds and that they put robots in the pills and the shots to experiment on me.
Your first question, about a sustianable treatment plan... Well, I live in a high-risk poverty town in Canada, so mental illness are at an all-time high here, so I see people behaving strangely too, and I do sometime wonder if I was one of them at times. When I'm well, I know I'm not, because my friends and my family act normal and don't ask me what's wrong. But when I'm unwell, I have a good ability to hide my fear, because of a common belief that if I tell my family, they'll get experiemented on too and get killed. Back to point, I think having a person to watch me when I'm well to prevent me being unwell. I see a nurse every week-ish, depending, and it's been good.

When I was 16, I had my first psychotic episode (however nobody confirmed it, but it's in my belief.) I got arrested for attempting to murder my own mom... I was jailed for 18 months, until I got released and had another psychotic episode where it was the factor that diagnosed me that. The judge cleared all my charges and it's out of view and sealed. I'm told that I can enter America as well, at this time now.

Thanks. 🙂

Having someone come and check on you regularly when well seems ace to me.

Because, like you said, no matter how much you might agree (when rational) that it is a good idea to tell someone when you're feeling off, feeling off and delusions, paranoia, etc, would mean it's just not a practical piece of advice. How would you feel when someone tells your rational you that should the time come you become affected again, that you must do this that or the other to be well? I ask as often I read advice and think.... what we're being told is actually victim blaming. It's putting sole responsibility on us to be rational and 'good' people in order to help ourselves out of an episode. Which is not addressing the problem at all, because the problem of someone deluded not reaching out is still going to remain, no matter how much it seems sensible advice.

It's great that you have such a proactive approach in place for yourself. My episodes are few and far between, and I am so mindful 24/7 that I have somehow been able to work my way out of probably countless potential episodes. An example of a difficult testing time was when I was called in to have bloodwork done as a dr that had been present for a procedure I had done, had become charged with skimming meds used for surgery and had an infectious disease. Yep, a paranoid person's nightmare that! While being wary for a long time was rational, it was difficult keeping it to that rational level.
For as long as I can remember I have had an irrational fear of any drug, including things like paracetamol. Having gotten over it, it was so annoying to have those fears validated!! I recently got prescribed a medication used in treating depression, but its purpose as prescribed to me was to solve a pain problem I had. I had a week of sleepless nights questioning those around me, and the motives for getting me on this medication. I was constantly fighting the belief that the idea of pain had been planted in my head, for just this purpose, or that maybe I had been psychotic all these years and was on a psych ward trying to become lucid an break out. After the initial week the intensity dissapated and rationality returned. Even better, the pain is gone :).

That recent experience, is what has me looking at seeing someone to check in with. Like you I want to be proactive, and if not a medical professional checking in, getting my partner clued up on just what they could do to help if things went south, or to identify things. But as you say, even better would be us training up together and working even more proactively at being mindful and CBT etc. So that I'm making some of these things more routine, rather than just employing their use at times I feel I may be tipping.

🙂

So sorry you have to deal with the presumption of psychosis/etc before proven otherwise thing too. Annoying is understatement!!

xxx

@Sehnsucht, yes! I've gone off meds so much that it triggers a psychotic episode almost every time, all just because I don't trust the meds, or think it's been tampered with.

I so relate with your idea of "stuck on a psych ward in real life and stuck in this imaginary world trying to break out"... but is that really a delusion? I'm not sure. Is it? If so, then I struggle with that too.

Yeah, that sounds about right.

I'm also schizoaffective, started when I was 17. I hallucinate visually very hard pretty much from the day it started to now, even on medications that work well for everything else. This was kind of a blessing for me near the beginning because it started very suddenly, so it was quite obvious to me, and i imagine to a lot of other people that something was very wrong. I refused to acknowledge it though. during the first year i would stay awake despite taking prescription sleeping pills i bought at my highschool and opiates as well, sometimes i would go a full week or more without ever feeling tired, much less dozing off( which still happens sometimes, my body develops some sort of tolerance to sleeping medication about every 8-14 months, so i have been on a laundry list of those) What I didn't know was what a delusion was and I had some very very long running delusions. I thought if I didn't get a diagnosis that it would eventually stop. I thought that if I called it crank speed up or jib that I couldn't get addicted to meth. I thought if i called it opium, i couldn't get addicted to heroin. I don't truly know how much of my fear of being followed or any of the other paranoia based delusions I had during this period were from the drugs. I ended up getting a small, part time job at a University bookstore, but that went pretty horribly wrong, I ended up discussing how to make chemical bombs with myself at great volume at work (which I had learned from attending an advanced chemistry class at the university and learning about violent reactions) this led to the first of what is currently seven arrests, although after almost thirty six hours of high pressure questioning and sleep deprivation they did end up clearing me, having taken a bomb sniffing dog through my possessions, which I had asked them to retrieve for me as I was homeless at the time. I was still undiagnosed at this point, three years in. It was five years in that I got my diagnosis. before that came around I developed a habit with ketamine and in a disassociative state under the influence of that, I became addicted to coke. this kept on for about six months of daily use of both, during which i accrued tens of thousands of dollars worth of debt to drug dealers. the paranoia I experienced over my debt led me to quit, which i promptly did and have now beenn completely sober of all addictive drugs for three years (it's been years since my diagnosis, but it took a couple relapses with meth for me to finally get it.) there are many periods of indefinite length during these times that i have no memory of,(and also, to be honest my timeline is quite jumbled, so i don't even necessarily know that any part of this post runs in the correct order) but i did have friends tell me that during some of these I did some very frightening things, such as opening a strangers unlocked car in a parking lot, locking the doors and shutting myself in the trunk, and two seperate times (that i know of) physically attacking police. the diagnosis came after that. one of the most memorable moments of my life. the sweetest, prettiest doctor i have ever seen came and very quietly and sadly told me that i was not well. I didn't understand for maybe twenty minutes but she brought me around slowly. the final realization that she was right came when she had to tell me that i was handcuffed to a wheelchair because someone had called the police to tell them i was collecting empty bottles, smashing them in a pile on the street and jumping up and down on them in bare feet. then, there was probably the darkest period of my life(i don't consider this last part dark because i was not conscious of my illness, and i don't remember a lot of it) I kept engaging in self harming behavior, all sorts of different types, abusive relationships, in and out of dabbling with drugs in and out of jails and hospitals, in and out of doctor's offices trying to find the correct medication and just having no luck at all. the medications during this period were ones which either did nothing or made it worse.

eventually though I gained enough tools for coping and protecting myself from myself that it started to get better, i put meth behind me forever at last and it got So much better. I got a handle on my medications and spent a lot of time not getting their full benefit because i am very bad with schedules and remembering to do this by a specific time or date. but eventually everything balanced out. I moved far from where it all had started and I have been doing pretty well since then. i still have the occasional snap into an episode, but i have learned what it "feels" like when that is coming and i get myself to a hospital pronto. i educated myself, both as far as general knowledge and as far as personal knowledge of my illness. moved again to live in my mother's home so i can be sure that i take my meds, eat and sleep properlay etc, none of my friends in the new town know that i even have a disorder, so i think it's fair to say i'm doing well at last.

Thanks for this! I am diagnosed with SAD (gotta lol at the acronym) as well. I'm curious about other people's experiences too. It's refreshing to hear people's stories about their psychosis and SAD. I acknowledge it’s important to focus on solutions and strategies to prevent further episodes but I reckon we can learn a little bit by sharing our delusional stories as well.

My first episode when I was 27 - I had an existential crisis. I think it was triggered by the fact that my career wasn't panning out the way I wanted plus I was stalling re: moving on with my relationship with GF, saving for a house and couldn't piece it all together. I didn't have the coping strategies to manage it all. Also there were some colleagues who I perceived to be malevolent and I developed paranoia about scandalous findings at work which led to a full psychotic break with unhinged paranoia about snipers, SAS regiment, being under surveillance, good vs evil, lawyers - and more! I wasn't hospitalised but was house bound for quite a while. Afterwards I resigned from work, went on Newstart and it took me over a year to get back into work and had lots of post-psychotic depression during this time. I'm very lucky to have a really supportive family who helped me out a lot in my recovery.

I had my second episode when I was 34. In hindsight, I had bi-polar type symptoms for a couple of years prior unbeknownst to my Dr or me as I was seemingly doing really well and high functioning despite some depression, anxiety and work stress. My family noticed my agitation and mood swings but we couldn't pin down the problem or read the signs just due to lack of insight and experience.

Once again I had work troubles, self-diagnosed myself hypomanic and took a week of sick leave. Unfortunately I had been prodomal for a while before that and there were some issues with medication (some non-compliance and also not having the right ones) and I ended up floridly psychotic which led to me being sectioned for a few weeks. When I wasn't in psych hospital but still unwell I did a lot of physical 'questing' around the place (sometimes in the middle of the night, shopping for supplies during the day, trespassing looking for clues, choke hold by police officer, wandering the cold streets) and had delusions of being in some sort of secret spy agency which was part of a broader irrational, confused conspiracy. I hear that it takes a long time for people to get the medication and treatment right and that was the case for me. I believe we got the mix right after this second episode and I’ve been well and on meds since then.

A lot of my delusions are based around me being accepted, successful, important etc. and I think these thoughts stem from the fact that I haven't met my own high expectations of success over the years (that said, I'm doing alright in most ways most of the time and have had some really good times).

In recovery I’ve had my ups and downs and often slower that I’d expect. Family has stayed supportive and I have some good friends. I’ve drunk too much, smoked cigs a bit on and off (too expensive, not worth it health or $$$ wise) and had a miniscule amount of other drugs (my doc tells me sometimes people become psychotic from very small doses of these so I’ve steered clear for the past few years). Apart from these vices I live well. I’m happy where I am (always room for improvement for sure though) and am looking forward to the future.