Advise for talking/mumbling to self

Family
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Wow, it’s been a long time since I’ve been in this forum! To answer your question, I do take medication— a relatively low dosage of Abilify. I originally started out with Trilafon and a short time with Risperdal which did not work out well, then Xyprexa.

My first year in Psychosis I did not take drugs at all due to an unfortunate initial encounter with what I consider an incompetent psychiatrist. However I did have extensive talk therapy with a Jungian therapist at that time (two hours a week) I was able to work part time and take a couple college classes during this period.

After a period where I thought I had everything figured out, similar to the bit in ‘A Beautiful Mind’ where Nash supposedly realizes that the imaginary girl he sees never ages, I went on a ‘diet of the mind’. But eventually ended up in a mental hospital. After that, I realized that I would be unemployable if I didn’t take medication, I found a psychiatrist and started taking traditional neuroleptics.

From there I got interested in singing and acting and made friends in the local theatre community where I lived. Things gradually improved for me and I started working full time, and eventually went back to university and finished my degree. I continued talk therapy for many years, but eventually decided to end it as it was costing a lot of money, and I reached a point of limited returns.

I spent some time trying to keep it together without medication, suffered a few mini-relapses, but haven’t been hospitalized but the one time. I presently see a psychiatrist/life coach every 3 months and we do a mix of talk therapy and psychiatry. I’ve found medication to be cheap insurance, but I’ve also found that most people (even psychiatrists/psychologists) can’t tell if I’m on or off medication.

I’m well aware that I’m a rare case, and I get people who argue with me saying I was misdiagnosed or was ‘faking it’ to get attention blah blah blah. I tend to stay out of forums and support groups and such, because I both don’t want to raise false hopes or raise the ire of people who doubt my story.

If you are interested in how highly functional people with schizophrenia cope, I can recommend ‘The Center Cannot Hold’ by Elyn Sacks. She was diagnosed with schizophrenia, yet has a PHD and won a McArthur ‘genius’ award for the book. She’s also done studies of highly functional people with schizophrenia. I used many of the same strategies she describes in the book, years before I even read it.

In closing I’ll say the main element of success in my recovery was I didn’t give up. I viewed my condition as a problem to be solved or worked around. I also think exploring creative processes, and learning new things helped my brain recover. Thrusting myself into social situations both in and outside work helped too, as far as I could tolerate it without being triggered. Most people I know don’t know of my illness and I tend to keep it that way. Everyone’s experience is different, this just how I was able to recover and adapt to my illness.

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@Maggotbrane
Thank you for sharing your story… so far my daughter has been doing well after her first hospitalization (voluntarily) earlier this month. I hope she will have a similar experience… she is on haldol and it is definitely helping with the voices. I admit that sometimes I have thoughts wondering if I really belong on this forum… my daughter was diagnosed with Schizotypal personality disorder because her symptoms were not considered severe enough to be schizophrenia. She is doing fairly well with treatment while I read about some of the things others are going through with their loved ones with much more severe symptoms… but then I realized how much the illness has affected the family and I still need and appreciate very much to support I get here. Like you said, everyone’s experience is different.

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@Maggotbrane Thanks so much for this. So now you are doing ok and not on meds? I have heard about the Center Cannot Hold. I will have to read it. So glad to hear a good story!

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Thank you. But do not mistake me, I do take meds. In fact I visited my psychiatrist today and got a refill prescription.

While I have spent time without medication, I don’t recommend it. I only mention it here, so that caregivers know to expect this as a possibility and that they may not be able to tell if someone has ‘gone off their meds.’ My guess is the likelihood that a ‘consumer’ would cease taking medication follows an inverse bell-curve: Those with little insight in their disease not fully understanding the need, and those with significant insight hoping they can self-monitor or wanting to prove they can get by without meds.

Elyn Saks discusses her on and off attempts to survive without meds in ‘The Center Cannot Hold’. Since I’ve flirted with this too, I speculate it may be common on this side of the spectrum, but there’s very little data. In my case, the drug I take has minimal side effects and is ‘free’ with my present health insurance, so it would be foolish not to take it.

Sorry if I wasn’t clear about my drug use. I intuit that English might not be your primary language, so I will try to write more plainly in the future.

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Thank you for re-joining the discussions. I have put a hold on ‘The Center Cannot Hold’ from my public library and am looking forward to reading it. My husband (schizoaffective, dual diagnosis, bulimic purging type) is moderately functional, can drive, cook, be in social situations, but cannot keep it together to work, especially for other people. It has been difficult educating people around me about the different levels of illness and how it is presented in interactions with others. Most people think my husband is lazy, confrontational and angry and have a hard time understanding that it is all part of the illness. He is a smart and sweet person inside. I’m so glad to hear you are doing well, Maggotbrane! Keep up the good work.

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@Windyhill63 good to hear that your daughter is doing better. Milder cases of sz like sza and szt (schizo -phrenia, -affective, -typical respectively) are associated with better outcomes.

Haldol is known to be quite effective even in low dosages. It fell out of favor after the atypical neuroleptics came along, due to the risk of tradive dysconisea, but is seeing a bit of a renaissance. I’ve never taken it, but I did take Trilafon (as did Elyn Saks) and I sometimes feel a bit nostalgic and grateful for its existence since it got me through my initial tough times.

As far as not belonging goes, I go back and forth on this myself. Early on in my illness I used to attend NAMI meetings and conferences with my parents when we both needed support, but as I recovered we both needed less support. A bit of ‘survivor guilt’ set in too. It’s hard to go into a meeting and sit at ‘the adult table’ and speak of budding professional and social achievements, when families need support with the basics like med compliance, housing, disability or basic employment. At the time atypical neuroleptics were just coming on the market and the consumer moment had just started, and I was interested in the new medications, but afterwards I enventually stopped going.

I’ve been at this over 30 years with a wealth of experience with my spot on this spectrum. But being a bit of a unicorn and stigma being what it is, I mostly stay in the closet. Oh I venture out in forums from time to time, or get brave in other ways. I’m not quite sure what to do with it. I considered writing a book off and on for years, but ‘The Center Cannot Hold’ was very close to what I would write, and Elyn Saks more accomplished than I, so I thought why bother? I’ve also considered doing a TED talk when I retire.

Other times I think it’s enough to live a semi-normal life, and poke my head out every once and a while to prove to people that unicorns do exist. And @Windyhill63 if you or your daughter would like advice or help in any way on how to navigate her recovery, feel free to message me. I know from experience this can be a lonely existence, yet everyone needs help from time to time.

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Thank you for sharing the TED video of Elyn Saks in the other topic… I see some factors she mentions that I see is a factor in my daughter’s experience… especially a strong support from family and friends… A lot of people praying for her, too! Also her creative mind does help keep her mind occupied as she draws, writes and makes stuffed art dolls. If she decides she can handle college, she will study art. She is considering her options… She is a senior in high school. She is very intelligent, but the stress associated with school makes it a challenge for her to get good grades. She is considering maybe working first, or starting out in a community college and then transferring or starting out with correspondence courses. On her meds, school is more manageable since the voices are not as loud to her. Still the thought of more schooling after high school does seem overwhelming at times. She is also interested in watch making and may see if there is anyway for an apprenticeship… this may be harder to find… she is also interested in working with animals in some way, but not as a veterinarian. So many options she is considering, but still doesn’t know which way to take. We are not going to push her to make any decision on this right away, we just want to take care of her mental health first.
I noticed that “The Center Cannot Hold” is available at the local public library so I will check it out.

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Okay so my dad was schizophrenic and I am also a nurse who has worked heavily in the field of mental illness. I have some food for thought and also some advice.

Food for thought- both my dad and one of my very first schizophrenic residents were able to understand that their delusions and our reality did not match up. From my research this is not uncommon. The person with schizophrenia will often deny seeing someone or hearing someone or speaking back to them and may be agitated when you question them because they are completely aware that you can not see or hear this person that they can. It’s frustrating and embarrassing for them, but that doesn’t mean they don’t believe what they are hearing and seeing to be reality. To them we appear to have an altered sense of reality. Very likely why your son does not want to talk to anyone about who he is talking to. The resident in this situation actually blew my mind when I repeatedly asked her who she was talking to and she would always respond “no one!” Slightly annoyed with me. One day I told her if someone was nothing her ever, and if she told me about it, that I could help her make them go away… this is what blew my mind. She responded with “how can you make them go away if you can not hear them and you can not see them?”… the fact that she was so aware of the difference in her reality versus mine was something I did not expect.

Advice- I also saw your thread about medication and side effects and it seems they are having trouble getting everything just so. Have you ever considered genesite testing? As a nurse who works with many different residents I can say I’ve seen this testing help people very much in the medication department and which ones will work best for each individual. It also helps eliminate unnecessary medication. Plus it is usually covered by insurance otherwise it’s only 300 out of pocket. Not bad for such beneficial testing.

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I myself talk to myself… or think out loud… my family calls it “giving commentary” because it is often related to something to what I am doing…
Or sometime I am not particular talking directly to anyone in particular, just general to anyone who might be present… again related to something I am working on. It does annoy the others in my family: “You don’t need to give commentary all the time!” I do admit that I feel a little embarrassed when they mention this to me. I have always thought if it as some type of focusing techique I developed at some point to deal with my ADHD… sometimes I wonder if there is more going on in my mind than just ADHD at times (which is currently untreated) …since I do share some of the characteristics with my daughter that are mentioned as symptoms, such as not always doing well in social situations… feeling slightly paranoid (like thinking people are talking about me when they are whispering) and ocassionally responding with anxiety to stressful situations. There are times my wife tells me to calm down. There are often times when I mean to say one thing, but I end up saying something different (maybe the wrong word or a similar sounding word)… I knew what I meant to say, but it doesn’t always come out that way. I often describe this as my mind working faster than my mouth. Maybe for the most part these things are not as promblematic as they are in my daughter to be considered a “symptom”.

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She sounds like quite a multipotentialite which is both a blessing and curse of mine. Although it may not seem like it now, having an episode earlier in her life will likely be a good for her outcome. My prodome started in high school, but I didn’t become lurid until after I struggled with the stress of college. I’ve met many people with sz and bpd who became ill in college and ended up dropping out. Going back and finishing is hard. It took me 10 years to go back and get my degree. When you recover you always have a bit of the feeling of being behind everyone else.

I think it’s a good idea to take it slow where work and school are involved. In my experience it takes while to get accustomed to new environments, as being on the schizo-spectrum means every day is an assault on the senses. Yet, staying isolated can be just as bad because unwanted thoughts and paranoia can creep in. Keeping in relatively ‘chill’ environments that she can escape without consequence when she gets overwhelmed is helpful. Personally I didn’t find avoiding stress altogether to be helpful. The reality is life is stressful from time to time, and if you avoid stress altogether the lack of preparation can be just as disabling as the illness. So if she can start off part-time in school or work somewhere close by in a quiet environment with a limited number of people who she knows or can get to know that would be great. It takes a while to learn coping strategies and over time she will likely learn to better handle her stress.

Many people with mental illnesses form tight bonds with animals. They can be easier and less confusing to relate to than people. There are many opportunities for volunteer work like animal shelters and TNR programs, horse and cattle farms, zoos etc.

Art and artisanship can be good outlets too, as people in the arts can be more forgiving of eccentricities. I work in a technical field, but my hobbies bend toward the Arts for this reason. Surprisingly I found ‘nerd culture’ to be tolerant of eccentricities, but this only goes but so far if your ideas and thoughts are jumbled. Art is more forgiving of non-linear thinkers.

You seem fairly early on in your journey, but I think it’s important to mention one thing. As a parent your ultimate goal and responsibility is raising your daughter to be self-sufficient, and this should be something you both work toward. This may involve unpleasant and heart wrenching things like charging her rent if she lives at home, or asking her to work or do chores. For example my mother started charging me rent and I was expected to pay for part of my healthcare, etc. I resented it at the time, because my brother (who has bpd) was not required to do the same. Yet now, I am a self sufficient professional who owns his own home, and my brother is still dependent on my parents. Most everyone says she did me a favor.

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One roadblock that will need to be overcome for her to start working is getting her driver’s license. She had her learner’s permit so we can encourage her to let us take her out driving… start her out easy, like at the parking lot of a nearby school.

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I am reading a book for parents of adolescents with schizophrenia, so I see that if she decides to go to college, we should check into any disability service at whatever college she goes to.

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I wouldn’t have considered that; the ADA act was fairly new at the time I went back to college to finish and I didn’t see the need to try and test things. I don’t have experience with this, but I likely would have been hesitant due to the possibility of being stigmatized. The main interventions I’ve had with studies is extensions of deadlines and incompletes when I had to miss class due to illness. At the time they didn’t get into much detail. There may be other ‘perks’ like tutoring or alternative exam environments. Nowadays most lectures are recorded for playback, so note taking services are not as necessary.