I’m active on the sz site and I’d like to offer any advise I can here. Ask me anything
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We definitely appreciate some first hand experience.
If you don’t mind, I’ll kick this thread off with a warm-up;
In your own personal opinion,
What is the biggest thing that seems to help you feel at ease?
Is there anything you are doing for yourself that helps you to feel hopeful toward your own future?
The number one thing is to get on the right medication. Without medication I would be psychotic with hallucinations and delusions.
Future prospects are often grim for people with sz because the negative symptoms sap your energy and motivation as well as your ability to think. Depending on an individual’s case a goal might be just to get thru the day. Long term goals depend on how well managed the symptoms are.
I’m married and have a child but I am too disabled to work. Most of the day I am in bed. I look forward to moving eventually and watching my son grow up.
As some back story I was a successful accountant with just bipolar before I got sz at 35. I’m now 39.
Thanks for the honest reply.
As a person who has had SzA for 4 or so years,
Does it seem like you have made a lot of progress in managing the disorder and getting to enjoy at least some part of your day-to-day?
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I wonder if you can give me some insight on why my 28 yo son won’t take his meds? I know this is a common problem. He will not open up to me… Do the meds make . you feel horrible? He once said they don’t take away the voices so why should he take it…
I admire you for wanting to help us to understand. It is a horrific disease, and I pray for a cure. Thank you.
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Hi moonwalker,
Thanks for joining the discussion. My questions are: What made you decide to seek medication? Did you take medication when you were only bipolar? How long did it take from when you realized you were sz to receiving treatment? Were you resistant at all? How active was your spouse in the decision?
My husband has been un-medicated since not too long after we met, about nine years ago. He had been institutionalized/imprisoned for almost ten years and force-medicated. Once he had his sanity restored by a judge, he decided to not take medication any more. His quality of life has gone downhill over the years but he still won’t take meds even though the sz has made him quite delusional and unable to function in society. I believe his largest fear is weight gain and then sluggishness.
I want to support him and I want him to feel his best. Any tips?
It is good to hear that you are looking forward to the future, seeing your son grow up. That means a lot.
When I first got sz all I did was stair at a radiator and talk to voices. I was entirely consumed by the disease. Then I got on meds and over 2-3 years the voices faded away.
What I deal with now are the negative symptoms such as low energy, motivation, poor ability to handle stress
I feel I’ve made great amount of progress from where I was
That does sound like a lot of progress.
Sorry to hear you’re struggling with negative symptoms.
Do you think it helps to try to be active, even if you end up cutting activity short (exercise, walking, grocery shopping, going to a movie theater, or other common things)?
I ask because I personally believe that just trying consistently is valuable, even if any one particular day’s effort ends up being a little disappointing.
@Moonwalker,
My 18 year old daughter has schizotypal personality disorder. I believe she got this diagnosis because they felt her symptoms were not severe enough to be schizophrenia. She is graduating in June and she is still deciding what to do… she is not sure she is ready for college because of anxieties related to school… she hasn’t had any jobs because of anxiety… but she recently started on anxiety meds along with as her antipsychotic medication she had been taking.
I am concerned about her doing nothing… knowing she will get bored and that is often when anxieties hit her… She currently lives at home with us and doesn’t drive… she hopes to get her driver’s license this summer. My wife and I work an hour away from our home. She works with crafts, making stuffed art dolls… and is considering selling them in Etsy.
She has a lot of ideas but she is having trouble choosing one.
Any advice that might help her decisions on what to do next would be appreciated.
This is one of the hardest questions for me to answer because I have always taken my meds. I’ve been on meds for 20 years now, first for depression, then bipolar, and now sza.
Different meds react differently with different people. Sometimes the side effects of a drug is what cause some not to want to try meds. Many are in denial that that they need them.
Meds are the only think that can take away voices. If you’ve been trying one medication and it’s not working ask the pdoc to try another drug or combination. Medicine is the key to recovery
I’ve been on meds for 20 years, first for depression, the bipolar, and then sza. I’ve always been compliant and see how the meds help me.
It took me about two months to get treatment from sz onset. My dr was away sick for the first 5 and then I was still too scared to talk about it for 3 more weeks
Invega started working within 2 weeks, but it took 2-3 years to be free from voices
I’m sorry to hear about your husband being Ned non compliant. It’s a very tough issue to deal with. I’ll start another thread for it. Hang in there
I used to play competitive tennis in my teens, I was a great athlete. Being active these days is beyond me. I used to play tennis twice a week but I ended that. I spend a lot of time in bed. It’s hard to try for me because I have unusually bad fatigue
Much of what she can do will do with how she reacts to the meds. Spending a year home though I have heard can be worse because you get used to it. I’d urge her to go to school, take a lighter course load, put her self out there dispite thr paranoia. If it gets too bad just stay home then, you can always stay home
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I am thinking it might be good if she could take at least one class at the nearby community college… it might be a good start for her.
It might not be the college she really wants to go to… to study art… but it will be a good start… maybe to take some of the general education classes…
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It looks like the local community college has a 2 + 2 program in art, where she could transfer to a 4 year college and get a degree there in art.
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I think that’s a good middle ground between doing nothing and going away for school. What medications is she on?
As I understand it, lacking energy and drive to exercise (or even get out of the house) is a common symptom.
I’m sorry to hear that you aren’t able to enjoy tennis. That must be frustrating.
I also got bored of it w bit. I had been playing weekly when I stopped due to the birth of my son. I feel better without the added stress of getting outside the house to go
I know that there are things that my daughter once enjoyed before her onset that no longer give her the same enjoyment as well as particular foods… the foods because she went through a period when her voices were feeling her that she was gross and she seemed to it enjoy eating because of the way she felt her appearance at the time… after taking her AP meds her voices have gone away and this affect her as much… but still she is picky about food. She still doesn’t like playing board games as much as she used to.
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APs will dull your brain and lower attention span. On the sz forum it’s an understood rule to block posts into small paragraphs so it can be understood and not to write too much. Posts that are walls of text are usually ignored