Lived Experience Forum

[CherryBomb]

What a wonderful post @kenny66! Informative, insightful and honest. 

Thanks for teaching me somthing new.

[kenny66]

Hi kitcatsoppy

Sounds like you have a tough time managing your shizoA.

The one thing I really wanted to avoid with my treatment was being over sedated and over medicated. So I worked with my very patient psych over 3 years to get to a tolerable medication list with the fewest side effects.

I cant discuss labels here but I am on 2 antipsychotics and 2 mood stabilisers a day. I made a very strong decision about not taking antidepressants.

The antipsychotics I take don't over sedate me but I think that is because the psych and I had a very searching trial and error process to get to exactly what works for me. Medication is a very personal thing. I keep the medication at the least dose that can work.

I essentially am medicated all day but I function quite clearly-react to my environment and can have a pretty good time of things. I sort of take the position with my medication to just get it at a level that manages the undesirable aspects of my illness but also lets me function effectively.

I go through ECT treatments as well, and have had memeory issues with it too but I return to normal after a couple of months. I found it very helpful for mood issues.

I found that it is really easy to slip into a bit of a depressed state because of the enormity of ScizoA as a MI. It can be harder to wear than schizophrenia and can be a lot harder to manage.

@Rick on this site signs off with "hope endures" and that is so true. Even at my worst condition, I did not lose site at what hope might look like.

I found it really easy to put my condition and its effects, including medication side effects, into the too hard basket and just accept that was how it was going to be. Anyway I didn't want to be that way so I persecuted my psych to work with me to get to a tolerable medication/therapy regime I could live with.

All this takes hard work from you and your medical team but can have good results if you persevere. I hope things improve for you

Kenny

[dreamer80]

Kenny, you truly have a gift and are very inspirational 😊😊. Like you, I also seem to have acquired a higher end of intellectual ability , i don't know if that's a good thing or not in my case, i guess its both which is why im a bit afraid of what it will be like to be "normal" again as i quite enjoy some of the experiences i have with my SchizoA and think i would miss the insight it seems to give me in regards to being able to piece things together and look at the bigger picture, the only problem i have with it is that i cant get enough of it, i just want to keep learning and learning and finding answers to everything that it gets to the point of my mind being so cluttered with all this information that i think is going to be useful for something really big and life changing that i cant seem to grasp the everyday tasks involved with living a healthy safe life as these things are so boring and meaningless to me when i feel like i should be using my time to learn and do something amazing with my knowledge lol. My psych thinks that's my onset of psychosis talking, im not really sure but i feel like im meant to know this stuff for a reason and do something important with it. I get excited learning about new things and find myself trying to solve the problems of the world and life with it which i think stresses me out. Maybe i just need to try and learn how to manage my learning and try and focus on one subject at a time and try and be realistic with the outcomes. Your experiences shared are an inspiration to me and i hope to be able to get to the same place you are one
Day soon so i can do good things with what i have learnt. Thanks Kenny your awesome!!😊😊

[Sheybridge]

Hi kenny
Thanks for sharing, esp your approach to life in directing everything you do toward some thing you think is good... That is a profoundly simple, beautiful, healing life approach that despite all your struggles gives your life real meaning. Your awesome. Thank you again, I'm inspired to do the same.

[Sehnsucht]

This has been a really insightful read.

I find myself relating more to other schizoaffectives than I had previously presumed I would. A lot to think on.

[Tyler77]

Thanks for sharing Kenny...here's a link acerting your claims of a correlation between schizo type and bipolar type illnesses and high IQ's...

http://www.dailymail.co.uk/sciencetech/article-2154393/There-IS-link-genius-madness-claim-scientists...

Aristotle said "no great mind ever existed without a touch of madness"

Studies have shown that those who are child geniuses are 4 times more likely to develop some form of bipolar or schizophrenic illness.

I held a 3.9 GPA in college. I took a IQ test last week for fun and scored 165. I was diagnosed with bipolar in my mid twenties. It got changed to schizoaffective due to the delusions I would sometimes suffer from. Though, I believe some of those were brought on by substance abuse. I currently struggle with addiction. I did manage without medication for long periods of time. But it was exhausting trying to keep myself grounded and stable. Not always successful either and hospitalizations resulted.
Ive found medication to be a unwelcomed necessity of keeping sane.
the medication does compromise my intellectual ability though. Particularly in areas of creativity and self expression. Emotions that used to absolutely rock me now are much more calm. From a artistic standpoint, this is a loss. For passion and strong emotion often produce the best works of art, I think.
I want to thank you Kenny for sharing, because while reading your story, I realized I could relate a lot to it and as a result, no longer feel as alone as I sometimes do.
Keep striving for inner peace, realize though it's journey not a destination.

[Tyler77]

http://www.dailymail.co.uk/sciencetech/article-2154393/There-IS-link-genius-madness-claim-scientists...

[Stardustau]

Thanks so much for your well described first hand experience with SAD.  My sister has lived with this disorder for over 35 years now so I appreciate your insight and honesty in living through it on a day to day basis.  I have just taken over full time care of my sister from my mother,  who just passed away recently. It has been a very traumatic event, even more so for my sister, who had to be admitted to a Mental Health Ward.  She is now living with me and my husband and I see her improving as each day goes by.  I am optimistic that she will reach her "stable" level soon so that she can resume a more independent lifestyle; at the moment however, she is totally dependent on us in most aspects of her life, including personal wellbeing and day to day life.  She has joined a small group through the Outpatient Care Network and I feel that this will assist.   I wonder if you could tell me which support groups you are involved in and whether you find them helpful at all?

Again, thanks so much for your discussion and I wish you the very best.

[Krisleigh]

Hi there! I also have schizoaffective disorder and am managing motherhood and university. I really enjoyed your response and inspired that other MI suffers have positive outlooks on life and management. I'm well medicated also and it took me some time to find the right dose but since that I haven't looked back and God willing have been well for many years and hopefully many more to come. I also have good writing and reading skills and apply that in my uni work. I can always work on my grammar, however! I sometimes have difficulty with comprehension and retaining memory but I keep a diary, journal and copious amounts of notes to compensate. I try not to dwell on the stigma associated with the big S and all other MI's and keep a number of close friends who all have minimal mental ailments ( not everyone is the so-called norm) and like me for who I am not for what I suffer. I have many talents and strong ambitions to succeed even though I suffer motivational issues and depression. I wouldn't change who I am now for anything and wish this for all mental health sufferers. I'm taking vitamin supplements which aid anxiety and have ordered an animo acid from the US to try which is supposed to help with the negative symptoms of schizoaffective disorder. Very excited to start it. I tried to study before but became unwell and now am fulfilling a life-long dream to become a writer. I have a book of poetry accepted for publication by a qld publisher. Also exciting! Anyhow just wanted to say I was impressed with the way you tackle schizoaffective disorder and life itself. Kind regards 

[Former-Member]

Hi @Krisleigh,

I'm really interested in how you manage your SA with a family and uni?

I'm currently studying and I'm really struggling with memory- if you have any tips I'd love to hear them!

Thanks everyone and @kenny66 for your stories, it's nice to know I'm not the only one out there!

Bec