Lived Experience Forum

[Sehnsucht]

I am here,

Just wishing to acknowledge all posts on this thread.

Whenever I return to it I feel less lonely.

Thank you.

xx

[april]

Hi @Squarepeg

It's very hard to separate symptoms of this illness from 'self' at times. The onset of my illness was sudden and I felt a lot of grief. I thought I had forever lost myself to it. My grief is now less and acceptance has taken over. Medicine and therapy go a long way but still symptoms appear. Heard an expression somewhere, "Schizoaffective...twice the fight."

Best wishes to you and all

[spudd]

Hi Kenny,

                Like yourself, I have suffered Mental Illness for many years and I do believe that I was struggling with mental illness way before I was diagnosed when I was around 30 I'm 52 this year. 

I was raised in an all boy family I have four brothers we all extremely close in years ranging from 54,53,52(me) 50, and 48, I was always different than my brothers academically they excelled and I well I excelled at sports, in the classroom, for instance, I just couldn't keep still and was always the class clown with a great sense of humour. 

I joined the Army and excelled both physically and surprised myself academically had a fantastic career until around 30 I was Medically discharged and diagnosed with Bipolar and 2 years later diagnosed with PTSD from Service Overseas. I have had 3 admissions for mental health ailments. After fighting for a Dept Veteran Affairs Pension for 10 years I still believe that there is something else going on and I do think that I also have  Schizoaffective Disorder, which I will add that I have never heard of this term until today. Ignorance maybe? I don't know but I'm a little cranky that through all my regular visits to my psychiatrist and psychologist no one has put this forward to me I don't believe I have been diagnosed correctly, I'm only new here so I hope this all makes sense.

[PurpleKathy]

Hi there fellow Schizoaffective person, I read your story and can relate to a lot of it.  My meds are now down to a level where I can function with others, however my anxiety makes it difficult at times.  I just have difficulty mixing with people in a group for a long standing time.  Short bursts of interaction is just fine as I can cope with that.  I feel terribly alone some days, while I am really lucky to have a husband who is Aspergers/Depressive I still feel so alone.  My voices come and go, as the medications has effectively dimmed them so I don't have them for company anymore, and at the same time there aren't there to cause disharmony inside my head.  I am just about to finish a Diploma in Community Services and yet am unsure about what type of job to undertake as my breakdown was a mix of home and work pressures and me exploding. I don't really want to risk another situation like that again.  I think you are very brave and I encourage you to work with other in the mental health field to gain experience and knowledge for employment. 

When the NDIS came out I LOST my PHaMS support, my only psychosocial support and regardless of their(Govt) promisses we live out west Qld and there are no other services taking over their role.  I have no psychosocial support and really need help in this area. This hasn't been available for three years now.

[jem80]

@PurpleKathy thank you for sharing your story. It’s good to hear that your voices have dimmed. Congratulations for studying an Advanced Diploma  of community services. There are many peer worker roles out there but I have found it competitive like any job. I’m sure you will find something don’t give up.

I have been living with schizo affective disorder for 13 years. I’m about to go back to online study as I don’t believe I would be able to handle the classroom environment, do assignments and go to work. Online study is a little bit self paced and I can do it in my pyjamas.

I have been a peer facilitator for about 2 years telling my story to students, carers, consumers and stakeholders.

I empathise with you in the anxiety, stress and utter frustration the ndis has caused for you. I too are in a similar situation here in Victoria, I lost my mental health nurse because their funding stopped because of the introduction of ndis coming to the region. I’m stretched using Medicare as a way to fund treatments but there are still some appointments I pay upfront then have to wait for Medicare and pay the difference. You can get 10 visits from a psychologist and then get an additional 5 visits through to the allied health plan in Medicare to stretch out as far as you can until the next mental health plan.

others that I know here in Victoria are having the same issue with psychosocial supports. They have been told they are going to lose them and because they’re up for review with the ndis they have no funding behind them to get support.

[PurpleKathy]

Hi  there Jem80 Senior, so great of you to share your stories with myself.  I really appreciate having others out there who are the same talking to me.  It's not right the way the government is treating people with mental health.  We are not supposed to be any WORSE OFF when the NDIS was instigated, however that is totally wrong.  Only recently I had a review, the NDIS LAC person decided to make herself my support coordinator effectively stopping me from having a voice about my plan.  I am in the process of having a re-review however I'm not holding my breath, it has been over a week and they don't even seem to want to acknowledge that I put in the complaint.  I don't need this hassle in my life, I just want my package and get on with life. 🙂

[Bezak482]

Thanks for sharing your story, you write really well! I think living a multidimensional life is something unique and valuable.

I can relate to what you've said about grandeur/enhanced confidence and invincibility. It's something on my early warning checklist as I suspect I had this as well while at Uni and work in the prodome phase before a break down a few years ago.

[RAVEN1]

Kenny66 what a truly positive way of dealing with your mental illness. I am impressed. I too like to write, prose and also take photos. I have even had my photos in state galleries, with opening nights and important people attending, I unfortunately did not attended the last state exibition as I had issues with my mental health leading up to the opening night. So I missed out on that one. Still it was great to see my work up there on the gallery walls. Kenny66 I too have child abuse issues steming for neglect and physical abuse, I don't like to bring it up, for obvious reasons , let alone to elaborate on the experience publicly, but here goes nothing. I am a surrvior of incest. This violation of my person has left me an angry man and an emotional cripple with some serious issues. Your positive post has found my inner me, the part of me that is still a child, the innocent me. I can and hopefully will cope with this childhood trauma; in fact just admitting  to that abuse was a huge step in the right direction for me. People with mental illnesses rarely have the tools to help each other out but we can care and for that and your positive post I thank you Kenny66. Finaly admitting that in a calm and proactive forum has taken a great load off my shoulders. RAVEN1

[Sphinxly]

Hey there @RAVEN1,

Thank you for trusting us with your story. You're coping with a range of very valid emotions from your childhood trauma. I admire how you have shared so bravely with us, and I can hear it was the right choice for you in your journey. 

Here for you,

Sphinxly 🐣