Lived Experience Forum

[Dreamingtree]

Hi guys, this is just a post to say hi to anyone else living with schizoaffective disorder. My diagnosis was "upgraded" today from bipolar due to mild hallucinations. Does anyone have any advice for learning more about this disorder? How have you coped with your diagnosis? 

[StuF]

Hi @Dreamingtree 

Not sure how useful I'll be, but wanted to at least say hi back, from another person living with schizoaffective disorder.

I'm lucky- after diagnosis I finally gave up the weed (I'm not assuming this is a problem for you, but it shaped my recovery) and have been very fortunate to access a psychiatrist (I had been seeing her for a long time anyway for other mental health issues), a psychologist and also group therapy.

What supports do you have?

[Dreamingtree]

@StuF

My psychiatrist is ok with me using cannabis as it’s medicinal quality and helps with my migraines.I don’t feel any additional symptoms when I use it, but I know that different for everyone.

I see my psychiatrist monthly, my hospital outreach nurse weekly, and I’ve not yet found a psychologist or group support that I ‘click’ with.

[StuF]

Yeah @Dreamingtree  - my cannabis  usage was most definitely not medicinal!

But if it works for you and your Dr is ok with it, then totally you should continue

Sounds like you have some decent supports. Those last two can be tricky. I don't have any real suggestions as to how to find them. Are you in a city or rural area?

[Dreamingtree]

@StuF
I’m in a city, and from what I’ve heard, CBT is the best option for me.
I’ve done two years of DBT in the past and found that really helped regulate my emotions, so I’ll look into whether my hospital has any group availability for either of them. Dr just said if my mood doesn’t pick up in a month, then I’m back in hospital for a little bit, probably for ECT.

[StuF]

@Dreamingtree 

CBT is good. I also did DBT quite a while back, and found it helpful. My only regret with that was I just did the 6 months, not the repeat. But anyway, it was useful.

I've done groups for a long time and find them great- as long as you find the right facilitator and group!

Currently I do a mindfulness group- which is, as the name suggests, focussed on mindfulness skills and activities. It's great.

But yeah, we are all at different stages and with different diagnoses (subtle or major). If your hospital does run groups that sounds like a great place to start

[Dreamingtree]

@StuF, a mindfulness course could be great! I plan on starting to do yoga soon, and they do a meditation afterwards. I think that could be really good for me.

[StuF]

Yoga and meditation would be great for you I think @Dreamingtree 

We do limited practices of both in the group- it is only half a day- but it has finally got me into the habit of meditating each day, even if only for 10 minutes mindful of breath

(Oh, to say we do yoga is a bit of a stretch- we do "chair yoga"! Which is fun, but yeah)

I'd look into Qi Gong too 🙂

[sjb800]

Hi, and welcome. I have just joined a few moments ago 🙂

I am commenting on your post because I was diagnosed with schizoaffective disorder 13 years ago. I have coped by firstly being honest with my support team past and present, when you are honest about what your going through, it is much easier to treat. I have never really let my mental illness limit me in life, and I want you to know you can still go on to do amazing things with your life, schizoaffective disorder doesn't have to be a burden. If you respect your resilience, you can do anything. There are hard times involved, I wont lie. To inspire you and instil hope, I have just graduated with a diploma of mental health and I will now join the mental health sector to support people like me and inspire them in their recoveries. Mental health is hard work, stay strong and focused 🙂    

[tyme]

Wow! @sjb800 ! Thank you for sharing! That is very inspirational. We need more people like you in the sector. Ones who really 'get it' based on their own experiences. Thank you!

I look forward to seeing you around on the forums. Feel free to tag me by typing "@" in front of my name e.g. @tyme