How do you live with your diagnosis?

I was psychotic for six years, then diagnosed with Schizophrenia in 2015. At the advice of my psychiatrist i came off meds in 2016 and have been symptom free ever since, although I gained 40 kgs in weight due to medications. Thankfully I managed to get back into the workforce after a four year hiatus and I now work part time (although the position is unsuitable).

However as a result of the illness I lost many friends, my study and career was badly interrupted, I have no partner or children and I have been set back financially which has put many of my goals on hold.

I have dreams of long term solo travel, among other things, but I am struggling with the unknown.

I don’t know when I may or may not relapse. I don’t know if I will respond to medication as well as I did the first time. I may face job loss again and might not ever find another job. Going traveling is starting to seem like a really risky idea.

How do you guys deal with the unknown in your lives?

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I kick its ass e very day and tell it to ■■■■ or there will be consequences.

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I just keep on pushing along not worrying about if I’ll go into psychosis again. If it happens, I’ll fall down again.Then I will get back up, brush myself off, and keep on pushing along.

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I am maxed out on meds and went back to work. I wish I could come off of meds but I have tried and it doesn’t go well.

I have a full time job but I rarely make it to 40 hours a week. I just took a part time job that is a couple of weeks out of town every couple of months.

My SSDI gets reviewed in May and if the part time job goes well I plan going off of it. I need my security clearance to come back good to keep it. If it doesn’t work out I plan to cut my hours down and keep my SSDI unless I can find a higher paying job.

I am also working with a Voc Rehab counselor at the VA and she may recommend me for a non paid work experience.

So everything is kind of up in the air right now.

If I could come off of meds I would try to have my diagnosis refuted and get a medical to use my commercial pilots license again. Unfortunately I don’t see that happening. A couple months ago I tried coming off of Latuda and that didn’t go well. Was still maxed out on Geodon.

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How do I cope with fears of the future with this illness? When I get really worried about this, I tell myself I am “worrying” and tell myself to try to stop. I also talk to a social worker on a regular basis and that eases my worrying too.
When I am sick in some way, I often turn to the philosophy of “one day at at time.” That is, don’t think of the past and don’t think of the future. Just get by day by day.
I have had a rocky course with the illness in my life. I depend on medication to ease my symptoms and I understand from the medical authorities that this lessens my likelihood of relapses. I understand that the sedation is a serious unwanted side-effect.

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Well, after 37 years with schizophrenia I’ve been able to do some things with my life and I just keep the hope alive that I will continue being able to do these things. I see no reason why not.

A famous person once said, ""Do not fear the unknown, the unknown is just a known that we haven’t done yet."
OK, I made that last part up. But it sounds like something a famous person would say.

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I’m multi episodic so it’s meds for life for most of us.

You get used to it. I still get breakthroughs and side effects but I do allright. I’ve managed to carve out a decent life outside the grid. It’s not easy but it’s doable.

See the shrink every 6 weeks or so and maintain. It’s all about maintaining function. Wouldn’t recommend it but as I say it’s something you can live with!

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I was diagnosed with bipolar-type schizoaffective disorder three years ago. I have had very little relief from symptoms and have been trying a rainbow of medicine to try to relieve or reduce them. I have gained and lost weight twice now - upwards of 100 lbs. in either direction- though I do not change my diet or exercise habits, only medication. I do not have a job and rely on SSDI for my income. I am unreliable at best and would be unable to go in to work on a daily basis as there are many days when I cannot leave my room.

I do have hope for the future, though, as well as worry. I am hopeful that my psychiatrist (I see her monthly) will find the right combination of meds for me and that will enable me to go back to school for an MBA. I want to work as a human resource manager or something similar in an office environment. Maybe even in finance. I’d love to get off SSDI. It just isn’t enough money to survive. I’m only doing okay because my husband makes a decent income. Without him, I don’t know what I’d do. I’d like to work, buy a house, save up for retirement, go on a vacation. I do worry that this may never happen. A lady at the Office of Vocational Rehabilitation told me that I would have a very hard time getting a job with the symptoms that I listed on my application and the gap in my employment history. Hearing that really hurt. It made me feel very hopeless for a while. I’m also scared that I’ll never get better. I haven’t had much relief from my symptoms in three years, what’s to make it better? But I only think like that on my bad days.

On the other days, I have hope. To keep me motivated, I look at the things I want. I browse through houses on Realtor to see what I might be able to get someday. I look into colleges that offer MBAs to compare programs and prices. I search Monster for jobs that interest me just to make sure that they are out there. In other words, I daydream. But it keeps my hope alive. I have set a goal of starting volunteer work within a year to give me some references and something to put on my resume, then part-time work within two years. If I’m able to handle that, I figure I’ll be okay to start school. My work will pay for my MBA. Once I’ve finished my MBA (another three years- one year of prerequisites and two years for the program), I’ll have even more references and work for my resume and my new degree, so I’ll be ready to get full-time work. So essentially, I want to work full-time and be off disability in 6-8 years. My youngest daughter will be leaving for college around that time, so the timing is perfect. Thinking ahead and planning for positive things helps me to cope with the negative. When I hit a setback- say one of my goals isn’t met- I simply adjust my plans to accommodate for it and keep moving forward.

If I wanted to travel like you do, I would look into destinations, check out hotels and rental cars, estimate expenses to figure out how much I’d need to save, etc. I’d set a financial goal for myself and set out to meet it by a certain timeline. Don’t worry about what you can’t control (a relapse of symptoms); focus on the things that you CAN control. You have to know what works for you, though. As some people have mentioned, focusing on the day-to-day may be best for you. It really depends on you. This is just what works for me. :sunglasses:

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My therapist said that when you have anticipatory anxiety just think about the present. I hope this helps.

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I agree I should set goals and deadlines and go traveling in some form. It’s just that the first time I had an episode I also had Agnosia, and I had no idea I was sick. The only reason I got treatment was because I was taken into a hospital (in handcuffs) by the police and put on a compulsory reatment order on a locked ward. My mother and sister started the process by calling the local mental health services unit. I am worried that if I go overseas and have a relapse I will not realise I am sick and will have no one to help me. Things could go very badly. I could end up doing something really stupid/dangerous/get myself into trouble with the law etc.

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That is scary. Have you talked to a therapist or psychiatrist about this to get ideas on what you could do to realize your dream? What about traveling with someone who would know what to watch for?

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Hi @hashtag385 I really dislike the unknown and like you I don’t know what will happen in the future?Will I relapse even with meds?

I feel that traveling alone is a good idea.As in you will need to solve problem and that will really keep your mind occupied instead of wandering into the delusion or hallucination.Anyway,good luck and I hope you won’t be affect by mental health problem again.

I have. One suggested that I just do it and shouldn’t let anything stop me, but I don’t agree. I think I would need to travel with someone, but I don’t know anyone else who wants to travel long term and do the things I want to do. It would be easier if I had a commited partner who wanted to go, but I’m single and may never find anyone! I’ve thought about going back on antipsychotics as a preventative measure but I don’t want to because of the weight gain. I don’t know if my doctor would recommend it. Do you know of any antipsychotics that don’t cause weight gain? I was on Abilify and gained weight on that.

Thanks for sharing your situation and how you cope too.

Haha!! You Go for it haha. ( Sorry made me giggle).

I keep the specifics of my diagnosis top secret where I live. Nobody knows its name. And no one ever will. That way I keep on equal terms with every one. I take all of my meds religiously and I keep all of my doctor and nurse appointments so that I can remain as stable as possible. I utilize as many coping skills as I can think of to keep myself as well as possible. I find that these strategies work wonderfully in keeping me stable almost all of the time.

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Marriage and kids have not happened in my life as a result of the illness and I’m not sure if hey will. I’m 34 now.

I did manage to get my degree and career going’s d travel. But lost my career and many friends. And everything years ago.

I managed to get myself situated again livin independent in a house but I’m on disability. Here is what I do.

I stay on my medication because it keeps me balanced. I’ve tried coming off it and I just get worse.

I take small steps forward. They are small but I’m moving forward. That is the most important thing. I do this with the help of the mental health team which eventually I won’t need.

I take their advice.

The steps I take involve a little bit of socialising with a walking group and art group. Doing something I enjoy. I might not enjoy it a whole lot. But I put effort in it.

Eating healthy.

Go on a long walk once a week and gym once a week. (Sz can cause physical health problems and being on disability can make you prone to not doing much exercise)

In jan I plan to do a 5 week photography course one evening per week in college. It’s not a qualification. Just a hobby thing.

It is not easy to do any of these things at all and I push myself very hard and sometimes question why and hope it will get easier with time. But they are things now that lead to a bigger future. One where maybe I will be working. How will I ever know if I can work if I can’t do these things ? Or handle a spouse or child if I can’t be around anyone ?

I think your idea of travel is a great idea. It’s one of the perks of being with no partner or children I guess in a way. We can just take off whenever. As long as the finances are there and the destination is ready.

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I have to…

Worry all day Jon st about nothing waste time

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