I’ve said this before. I feel cheated. I was told for so long to wait for new drugs that would help the craziness. It ended up happening somehow. I slipped into remission and take no antipsychotics - I couldn’t if I wanted to, ever, though. I can’t manage them. Being expected to function in a world you never knew until an adult is unrealistic. I have spent 3.5 years adjusting to this world and I am at a point where I have made it farther than ever expected. Yet it is so unbelievably brutal. I have yet to meet professionals who have any idea what to do for someone in my position. They feed you lies about drugs, insist you will feel better, but should that actually come about they toss you away. They can’t help you adjust.
The biggest thing is being seen in society as highly intelligent, talented and largely independent. It’s still weird to know I have to manage normal things. I associate with the world on a normal level yet I know all these secrets of how my brain really operates. I feel like I am moving through a video game. Reality without psychosis is a tough path to navigate. It’s very vanilla. It’s great to not live in constant fear of demons but it’s bizarre. It affects your values. Things that I would think people consider fulfilling seem dull and empty. Boring. Even when you aren’t psychotic you know life in another world. Being forced into this bland plane leaves me feeling empty and defeated. I’m starved for love and physical contact which doesn’t help. It seems wrong that no one prepares you for this trap. I don’t even think the term recovery accurately applies to me. I’m not recovering. Recovery implies returning to a point where you once were.
I have the doc in the morning. I feel dumb for trusting the keep going mantra. The fight is real and I don’t see much worth in anything. I can feel good but the big picture is a pile of ■■■■.
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I relate to the ethos here. Bipolar for decades, I ran pedal to the metal, slamming every stimulation I could find. Wore my ANS so far down in the '90s it would get back up off the floor again. Meds chilled me, but didn’t fill me. I had The Jones for The Jits. Looked here, looked there. Still haven’t found peace in a dull world. But, at least I found the Tao and many of the upshots thereof. Meditation hasn’t let all the air out of the balloon yet, but it’s given me a nice balance between being alert and being chill… most of the time. (A little Seroquel helps, but it’s very little, now.) I have to respect what my ANS can handle. I can run on the pickets for a while, but I know now when to jump off.
ACT > MBSR > DBT > MBBT > Buddhism > Hinduism (& back) > Taoism > existentialism without the angst. Nice.
Psychosis was the worst thing that ever happened to me. It was torture. Yes, recovery is difficult with a whole new set of problems. But it is what it is. You just do it and suffer the consequences if you are not responsible.
But if you think about it, the fear of living in the real world is to avoid relapsing into psychosis and losing everything you have worked for. I don’t know where I’m going with this. But it’s like AA told me: addiction brings all kinds of problems. but kicking drugs doesn’t mean that you have no problems. Recovery from drugs and living life on life’s terms means you still have problems but now you have a higher class of problems. And it’s the same with recovering from mental illness.
When I was psychotic when I first got sick I didn’t even have a future. I saw no end in sight to excruciating suffering and misery. I spent two years suffering with no improvement every day was hell and every day was just as bad as the day before.
If someone would have asked me, “Say, how would you like to be recovered but you will have to make rent, keep your house clean, and go to your job every day”.? Man, if that offer was magically offered to me I would have jumped at the chance without thinking twice and taken that offer. That’s how I feel about your post and that’s how I feel about my life now as a recovering person with schizophrenia. My life now is more comfortable, more rewarding, and just all around better than when I was in psychosis.
Do I like my whole life now? Well I have my ups and downs and fears of failure. But at least now I get to pick where I want to live, I get to choose where I want to work, I get to enjoy luxuries I earned and my world is bigger than when I was psychotic. When I was psychotic I couldn’t have imagined flying across the country several times like I’ve done in recovery. I couldn’t imagine being best man at my dads wedding or afterward making a toast in a crowded hotel room in front of twenty five people at the reception.
I could never imagined I would frequently drive 175 miles to visit my dad in Sacramento. I have a little power and control in my life now which was missing when I was psychotic. Yeah, I’ll take my problems now any day over my problems when I first got sick and spent 8 months locked up in a psychiatric hospital. I think you get my drift. Yes, psychosis affected my ability to live, but I am managing and learing.
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Let’s just say , recovery is not intuitive to the schizophrenic mind , where as being crazy makes ‘sense’. Recovery is counter intuitive at times , that’s why its difficult.
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I think that’s the biggest thing. I feel like I’m navigating without a map.
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Its going to be harder still if you don’t take meds. Maybe impossible.
I hear you. I have made many strides in the past three years. I could never imagine the level
Of functionality I am experiencing. Psychosis is easier in the sense that i felt I could allow myself to completely slip and die whereas now I don’t give myself the option. I equate it to a tug of war and I’m the middle of the rope. I’m dangling between two worlds and I just want to slip into one. I didn’t expect to achieve remission and I am still dealing with the shock of it. Increased responsibility has come up and lately I’ve found myself with next to no family support. The more you gain the more you have to lose. I can look back and see how far I have come and how accomplished I am. Yet most of these victories are over things that most cannot fathom and it feels alienating. I’m realizing tonight that I really need intimate connections. It’s weird because I never wanted any of that before. I’m in limbo. Ideally I would have a partner and be completely financially independent. I just struggle to cope as I chip away. But thank you. I cycle in and out of brain modes throughout the day. Sometimes I am very up but I crash too. I have never been this lonely before. I never felt a need for others yet I know I can’t just be around anyone.
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It’s not an option. I can’t manage them and I am much better since I discontinued. My docs agree in my case it’s unsafe for me.
Unsafe to take them that is.
OK , that is the predicament. What was your number one medical problem whilst taking them?
I’ve been able to meditate for the first time ever. I have learned some wicked good coping skills. But it’s a paycheck to paycheck feeling. I know how to work through rough nights but I also know I haven’t figured out how to maintain a baseline. Many treatment options have been exhausted. I am grateful to be with docs who I actually trust but it’s disconcerting to know that they are unsure of what the hell they are dealing with. Love though. I need that ■■■■. I’m seeing how it’s something I’ve never truly had, but I used to be ok with that. There is a black hole in my day. It creeps around 10pm and sucks me in white often. I am in dire need of rest. I’m leaving for a vacation Friday. I have realized that I truly don’t know how to rest. It’s strange to think that is something so difficult to learn.
Never effective and EPS. Dystonia to the point where every minute of the day went to managing it. The effect on my brain also made it completely impossible to create - artistically and intellectually. Since my last med switch I earned a graphic design degree which before would have never been possible. Since no drugs my skills are 10x better. All APs killed that ability and now it’s the only reliable skill I have to earn a living.
If doctors know you and your family and feel like your neither a threat to yourself or others , then your functioning is not going to keep them up at night. Did you have a medical problem
Ahh , you know there are so many meds out there. What was the longest you were on an AP for?
Likely underlying things from birth. They are being investigated but it’s not clear cut. I finally began traveling 4 hours to see better docs. Even at the top hospital system in the state they are struck by the oddities of my range of symptoms/history and reactions. But they are still trying to get an answer and I trust my doc. The things they are testing for seem like likely culprits. I would love a diagnosis on that and to have some idea of treatment options. The thing is I know even with a diagnosis the prognosis isn’t lovely. Not much I can do with that now though. I have a lot of anger at the medical system. I fell through the cracks for so many years. I grew up in a doctors office being told I was exaggerating or being talked down to. I’m coming to terms with that because it weighs heavily on me. No way to know now what the effects of Haldol in utero were. I am high strung to begin with and I’m finding it hard to be patient.
Total duration of a AP treatment was 15 years/10 drugs.
Yeah that seems exhaustive all right , the only thing I’d say to you is with meds you’ve got to become your own doctor and not blindly take what they give you. A med has got to be right for you personally.
I was offered clozapine , no way would I take it. Caused so much friction I have zero relationship with the lead psychiatrist in my outpatient clinic. I meet with psychiatrists in his team , get on very well with them , haven’t met him though in about 20 months. He doesn’t take our meetings.
The same guy also offered me injections and no way would I take them. You’ve got to become your own guardian on these matters.
That’s what I ended up doing. I have had no positive symptoms for three years. I couldn’t take it anymore. The severity of my reactions is highly abnormal. My new doc is working on the reason for that. What I found was I had no one I could trust to help manage side effects. The experiences were downplayed and my life was about controlling them on my own. If I couldn’t figure out how and adapt to the changes with it I would end up in the ER where I would be treated like crap.
You probably have a good support system , family , etc. Are you married?
A doctor as I said will always look at your extended situation , and say ‘OK this guy does not want to take meds’ and then he’ll probably say ‘OK how likely will this blow up in my face if I don’t give him meds’ and then he’ll mitigate all this by asking questions like ‘is he married , does he live on his own , is he a loner , what’s his general demenour’ , and then he’ll make a decision 'OK it is not likely that this will blow up in my face , and if it does I can point to all this stuff ( that the guy was married , had a strong support system , etc , etc)
But meanwhile this is not helping you much.