The side effect of akathisia is the worst feeling because it feels like neverending restlessness, creating anxiety for myself. I shake my legs and cross and uncross them constantly. Psychiatric medication will do that. It feels as if my skin will jump off. It isn’t the strongest side effect, but it is the most constant. I did not know that this would be a side effect I would endure, but so far, it is the most obvious side effect I’ve encountered. I guess this is part of the experience of managing symptoms and side effects. I wonder if I look impatient or antsy, because it gives that feeling, although I’m not waiting on anything much except for it to stop. My legs doing this dance that won’t stop. I’ve discovered that it’s gonna be a part of me for the long haul, unless there are other psychiatric medications that do better. It’s just me and akathisia. Try saying that three times fast.
The ProPublica/PBS investigative documentary details the coordination of medical care and housing through nonprofits. The coordinated care wasn’t really coordinated and highlights the dangers of a lack of accountability for these adult homes and supportive housing. The main patient detailed in the documentary, Nestor Bunch, suffers from schizophrenia disorder. His mother lived her life as an amazing advocate for mental health, including advocacy for federal supportive housing funds.
The journalists investigated the coordination of New York State’s mental health system with independent living programs for those with severe mental illness.
The right to fail means allowing mental health patients with serious mental illness to live independently and away from supervised adult homes. The transitions lack gradual approaches, and the patients do not have strict adherence to medications and additional care. Even bad choices, including refusing to accept care in supportive housing, are part of the definition of the right to fail.
There is no incentive for adult home and supportive housing programs conducted by nonprofits to follow-up on independent patients without regulators enforcing those standards. The documentary shows the worry most individuals have in supportive living that their lives are too independent and therefore unmanageable for medication adherence and day-to-day living without them knowing. It can also be misconstrued as individuals unnecessarily fully capable of independence but are placed into that program, both as part of a court order or for efficiency.
Highly recommend the documentary because it focuses on the individual and the experiences dealing with someone with schizophrenia and managing symptoms while undertaking this system.
This book discusses the experiences of the author, who herself has schizoaffective disorder, bipolar type. There are few writings out there from the perspective of the individual with the mental illness, and her writing is outstanding. She writes about psychosis and managing her symptoms through medication management and finding her way through symptom management. She also attended Yale when she discovered her disorder, and she describes how colleges are incapable of handling mental health issues in any capacity, instead of sending the problems away, requiring her to transfer to Stanford to complete her undergraduate degree.
She was previously diagnosed as bipolar that eventually evolved into the schizoaffective disorder diagnosis. Much of the writing focuses on her delusions and their medical historical origins, in particular, Cotard’s Delusion, which is the belief that the person believes they are dead. What I loved about the book was the challenges faced as she worked full-time as a lab manager. I can’t imagine being schizoaffective with a full-time job. I hope she manages her book tour and her schedule well.
The challenge of disabilities like schizophrenia experiencing psychosis is the fact that it does not look like you are suffering from any disability. My mind is aware of the voices and delusions I experience, and less so now with good medication, but it doesn’t change the fact that I have been dealt a blow similar to a person who may have dementia or early onset Alzheimer’s. I am no expert of my own disease but I read and study as much as I can and discovered this website. Visibility93’s campaign is to explain the disabilities of 93% of others without a wheelchair yet have a mental or physical disability. I applaud the effort and love the icon symbolizing schizophrenia because life does feel a bit like a bunch of circle dots surrounding my mind. I can only hope government agencies focused on ADA compliance will take this idea into consideration, especially the iconic blue color surrounding a major disability.
The main thing I can into my experience of schizophrenia and the psychoses that result is how I wanted to express how I feel during a moment of psychosis that explains my momentary disassociation to someone who is confused or switches away from that embarrassing experience on my end. It is a combination of shame and anxiety, but first, it is anxiety from going through it publicly. I walk and talk as if it’s just part of my disability, and it is hyperfocused whenever I experience it. I honestly think no one cares, but I do tremendously because of how controlling the psychosis is in dictating how I must feel and behave in public to avoid further scrutiny and therefore further heat from the conversation. This heat is what builds my strength that I am doing what is right in expressing my disability publicly. I even have a pin I sometimes wear whenever I feel that today is going to be a difficult day with it. It says “I have an invisible disability,” and I wear it so the respondent can view it first. I can’t read minds, but I feel it helps tremendously. The shame has reached but a flash of heat during moments when my brain is overloaded and I can find refuge in concealing it at a movie theatre concession stand, at a bank branch, or at the doctor’s office. But I do realize that there are most people with a “no big deal” than I anticipated. My moments are like seizures with auditory command hallucinations coincide with my eyes focused on a particular person. It is now understandable I represent a myriad of disorders and physical ailments that manifest as a brain overload or brief psychotic break. I am glad these moments are few and far between, and I thank my doctors and therapy for such progress. But that heat of shame is always there for a moment reminding me that I must continue making progress with it.
Psychosis is a tough thing to deal with. It is like a daydream that doesn’t stop running. I never felt more insecure when I discovered my psychosis at times operates during conversations and especially when I am alone. The books I have read on this suggest acknowledging the distractions and sending these distractions out of the way. It is challenging and reading from stories of those with those suffering through psychosis, I can’t imagine how they themselves manage such symptoms. My hope in posting this is to relate with those with psychosis as their primary symptom and how they manage such situations, in public and private.
I wanted to start a blog about managing difficult mental health challenges and the resources I have found along the way that have been useful for myself and hopefully for others interested in managing their own psychosis and providing guidance for friends and family members. I am excited to start this blog as both a confessional and as a work-in-progress for the countless times I struggle with my own mental illness, medication-resistant schizophrenia. I have always adhered to medication, but have switched doctors and medication types due to insurance reasons. Having a mental illness is expensive and to mitigate that I work part-time while moving back home with my parents. I am a model mental health patient in terms of medication management and symptom management, but it has always been a struggle, especially when transitioning toward holistic approaches I discovered that reduce anxiety and psychosis. I hope this blog can be a wellspring of information for those battling with psychosis, or that it may be an inspiration for those interested in my journey. My plans are to continue psychotherapy and managing my symptoms while I attend a graduate program in public administration. I hope this blog finds you well.