Just diagnosed

Hi @orangejuice welcome to the forums.

What now? Good question. Depending on where you are in the country there's a number of organisations who can help you navigate that question and point you in directions. Support groups are great for hearing other peoples' experiences and finding out more about what's out there.

These forums are great for reading a range of experiences which sometimes give you a bit of clarity into your own situation.

Do you have a therapist/psychologist/mental health case manager or anything like that?

I am under the community mental health team for my local area. I am in Sydney.

That's great. I'm in Darwin so hope the community mental health team there works as well as ours does though that said any service is really only as good as the people in it right. Most teams work with recovery models which is based on you getting the skills you need to get the quality of life you deserve out of life. I know our case managers work with community organisations like the Mental Illness Fellowship to access programs and support services. I'm pretty sure one of the moderators is over your way too so they'll have some more specific local info for you.

The most important thing is making sure you look after yourself and find the things that you need to stay well.

orangejuice, sorry to say but you will have to be patient and hope that we all can some of the miracle when it hits streets, in say, conserveaterly 100 years. Apart from that just try to roll with the flow. Sounds easy but it aint, good luch with your journey, at least you know that ther are plenty of helpers in this forum who are only too,pleased to help.

regards and happy hunting

loopy

I have had schizophrenia then schizoA pretty well my whole life. Not sure how severe your symptoms are but i manage quite well. Sure i have had both involuntary and voluntary admissions but have been patched up each time.

As long as keep up my medication, therapy and community-based support, you can get through most things. Its not a terminal sentence, its is more a test of human determination and resilience. I am at a pretty low and bad place at the moment but i do know that the support i mentioned will get me through. i remember being so scared when first diagnosed

I still get scared which is normal. Just don't become inconsolable-let others help you. I didn't at first and stayed sicker longer. Good luck to you. It does get easier when the diagnosis sinks in.

Kenny

Hi @orangejuice

Welcome to the forum!

It sounds like a really scary time for you. I don't know a huge amount about the illness but I'm wondering if @kenny66 might be able to help with any advice, or info about supports etc?

You are most welcome to ask away about issues - specific or general - here on the forum. (You might also find it helpful to use the search function on anything you are interested in, there's lots here.) Although we all live with various MIs, all over the country, it is a very supportive community. Others with a different MI may also have experienced something similar to what you are dealing with or shine some light on the way forward for you.

I can say that what you describe is somewhat similar to my own experience after I had children. I was semi-functional before that - in that I could usually work and keep a job (although very problematic work history punctuated with both manic and depressive episodes). I usually failed at anything I studied, after high school, because I couldn't stay the length of the course. Since kids I crash quite quickly if I try to push myself beyond being a parent (which is sometimes a huge strain in itself).

What I would like to encourage you with is that whilst it may feel like a life sentence, and that things will only get worse from here, that isn't necessarily true. Many of us who've had long journeys with MI have found there has been much good & many unexpected gifts which flow from it. Diagnosis & treatment has improved a lot in many ways, which means a better chance at getting accurate diagnosis and effective treatment/support sooner, rather than after many years or even decades.

However I will be honest with you - a "normal" life (whatever that really is, whether it is real at all) is not something an MI sufferer is likely to find helpful to look for. Having a MI is a journey; although many travel it the majority of the population still don't get the enormous strength it takes to walk & survive this road.

So I wish you gentle & compassionate journeying. Remember always to be kind to yourself along the way (& the more you are struggling the kinder you need to be).

Kindest regards,

Kristin

Schizoaffective is a hard road sometimes. I am probably a bit different to you in that I am in a small regional town with limited services, unlike the thriving metropolis of Sydney.

There are a number of groups available in Sydney both within the public system and privately, if you can afford it. There are so many community health centres and support groups there it is quite easy to tune into one of them. I am sure you know this.

The biggest problem I have had is knowing I have a problem and getting on top of it quickly. Getting to the E and A is usually my first line of attack when I have a major episode.

I also have given the local coppers a heads up and they will take me off to he MH clinic if needed. I also gave them some info on SchizoA which they did read, so they know a little bit about it.

I am not sure if you get the full delusions, hallucinations, psychosis, manic depression, severe mood disorders and all the jazz that goes with SchizoA but depending on that there are some strategies that can ground you so that you can cope. I am sure your mental health team has taught you these already.

As you know the symptoms of this MI can be very extreme. Even my schizophrenic flat mate is surprised by the range of behaviour that can arise from it.

My biggest tip is to know what your particular symptoms are in intricate detail and have your MH team tailor your treatment towards you specifically. I also found that the medication treatment can be quite different and it can be very difficult to arrive at the combination that works best for you, as it can be in other MIs as well..

I found it very important to not feel like a victim, but rather celebrate in a way my ability to deal with it, even if it was only partially effective.

Getting on top of it? I don't know. The big thing is to make sure it doesn't get on top of you. There is a lot of ignorance and in a way complacency about Schizoaffective Disorder and I am sure you know already it sort of gets lumped in with Schizophrenia, so its identity is somewhat blurred.

In my experience it is so different to schizophrenia, it really needs its own specialised treatment regime.

As time went on I found I got comfortable and somewhat accepting of the diagnosis and live with it in a kind of cojoint arrangement, but where I manage it rather that the other way around. Knowing it and understanding your MI and yourself and doing everything you can to keep yourself strong, safe and well is the key.

I should have mentioned that the diagnosis of schizoA is not necessarily a harbinger of doom indicating that there is a slippery slide downwards with ever worsening symptoms.

Actually, getting properly diagnosed and treated can mean the opposite. So like I said you and your team need to work on a programme specific to you.

I only improved after proper diagnosis.

kenny

Hey @kenny66

It's good to hear from you. So sorry you are in a dark place at the moment. We'll keep you in our thoughts &/or prayers. Please don't forget we are here in the hard times too, if "talking" to us might help.

It's so like you to be reaching out to encourage someone else in their suffering, even when you are struggling yourself. You are such a thoughtful and generous person. A gift to us all.

Kindest regards,

Kristin

Thanks Kristin for your kind words-they mean more to me than you could know.

I have been a bit off the air with my ECT sessions. They tend to unlock some stuff deep in the recesses of the mind. Mine relates to child abuse, so its been very confronting when that happens.

Add some interaction with my small immediate family who covered it up and find me an embarrasing reminder that it did happen, then the mix gets pretty toxic.

Anyway I find by about session 6 of the ECT I come good, so I know I will bounce back.

Enough about me. More importantly I think orangejuice needs some strong support from everyone in helping him come to terms with his new diagnosis and the challenges that lie ahead in dealing with it.

Thanks again Kristin

kenny