Lived Experience Forum

[Corny]

I know it's Christmas and holidays but I guess the fact that I am posting this at this time, is indicative of how broken and dysfunctional my nervous system is.

I am in the throws of tears, sleeplessness and panic attacks about my future and figuring out how on earth I will be able to support myself. 

I have been avoiding my pre-breakdown work experiences & memories and just putting it to the back of mind, La La La, don't go there, don't think about that you had to resign and now have zero referees, just delude yourself for 3 more months about the practical barriers.

Everyone is with their families, doing their Christmas shopping, catching up with people and winding down - but for people like me with severe anxiety, I am winding up. Projecting straight into next year when it hasn't even flipped to '19' yet. I have been reading a bit about Osher and I will read his bio soon, and I think I am very similar to him, in the sense that I am very anxiety dominant, to the most extreme level. I couldn't really relate to the content & nature of his anxieties, I don't experience those end of the world like thoughts, mine are based in the interpersonal and personal, but I do have that crazy physiological revving of the anxiety and fear engine. 

This time of year is very stressful for my family, like lots of people out there. We have shrunk our activities and am going to be very quiet. I've told Mum I am not doing any extended family visits, just Christmas day with immediate family, and that is it.  

Even though I am not pressuring myself to fake happiness and have banal conversation with my aloof homophobic extended family, maybe this has given me too much time and I am having panic attacks about my future. I can't stop thinking about my future and how on earth I am going to get a job and keep it. 

Some months back I read some of your posts @Tiggeroo about your partner's experience with anxiety on the bus, even the commute into work sets off a physiological response that is impossible to mindfully reign in, let alone performing the acutal job. 

It's transitions like these, navigating employment and social life, that only people with MI can understand, how the body takes over and how laughable it is to call it a MI. I only have one friend that truly gets this. She has Bipolar and has just crawled herself out of 6-9 months of dark depression realising that her working life is over. Finito. Cannot work ever again. Has absolutely no psycho-physiological resilience to perform new and unknown tasks with a bunch of strangers in a foreign environment. But because psychiatry in Australia follows the American system, we are so obsessed with categorical thinking and how our diagnoses differ. But the reality is that all mental illnesses are stress disorders, and I use the terms stress very broadly. It's not just cPTSD and PTSD that are stress disorders. Anyone with a mental illness doesn't process stimulus like someone who still has their health. 

I went to this depressing forum with some Businesses and Government reps talking about what they are doing to get people with disabilities into the workforce and how they are going to increase participation. There was even a speaker from Sane.

But there was this one speaker, I can't remember the name of their program, but basically it sounded like a bunch of Mum's had got together and rallied business groups and politicians to completely overhaul the recruitment process and break down the practical barriers for people with autism hoping to enter the workforce. She said that the recruitment process wasn't fair, which it isn't, and actually discriminates against the neurodiverse because their disability means people with autism experience cognitive deficits that make it near impossible to sit an interview. She said that in this program candidates no longer had to sit a one on one or panel interview, and they had redesigned the recruitment process entirely so people's skills and abilities can actually be found, instead of that person dropping out of the process all together and running home. So the structures were adjusted from the very beginning. She was very proud that they had been able to recruit talented people who had been locked in their bedrooms for a few years and were now working for the big banks, figuring out mathematical algorithms that had befuddled the ANZ bank for years and have upped their profits and efficiencies. 

And then the guy from Sane got up, representing people with mental health disability, and he talked about his Bipolar and talked and talked and talked. But the long and short of it was this. There is NO program for people like us. You basically are on your own, and have to spend 6-18 months building rapport with your manager, cross your fingers and your toes, ask the Universe for mercy, and hope that when you ask if you can work from home on the lap top 2 or 3 days a week to keep your symptoms down, they say yes. None of this special consideration with the recruitmene process. Just too bad so sad, toughen up. 

Governments, business and not for profits can meet their disability employment targets easily and never have to employ someone with a mental illness. Why on earth would an employer chose someone with a health condition that is episodic and may require adjustments from day 1, over someone with a health condition that is awful as well, but fixed, and not degenerative or episodic that only requires a different computer.

I know I have really offended a lot of people out there, but I can't help but criticise and compare how our society views the different conditions. And then the government whinges and complains that people like me sit on NeverStart for years like a bunch of no good bludgers and does nothing about systemic barriers for people with MI and severe trauma backgrounds. I don't think you can even access a Disability Employment Network unless you are on the DSP. It is an either/or, set and forget attitude by the government.

Humans have tried to wipe us off the face of the earth when we were young, or at least leave us with zero self esteem and confidence and yet I am supposed to feel confident in the system.

Even employers who arrogantly claim to be meritocracies aren't. They're full of shameless nepotism. Inbreeds, like something out of Deliverance. A-holes.

I think its best I go and do some physical activity, I have harldy slept a wink. 

Instead of saying just Good morning everyone, I will say, Good morning Vietnam.

Because he has won.

Corny

[Appleblossom]

Hello @Corny

Just letting you know I have read and agree with a lot of your post. 

Sorry you had to resign.

  I wish I could change the systems.  The autism aware agency sounds very good, but real change is slow. 

[IamNotMyMind]

Hi @Corny,

I'm not going to pretend I know what it's like for you because I think you and me have different shit going on, but... it is still shit. 🙂

We do have some stuff happening that is similar, in that I'm not particularly, Christmassy, I feel very much removed from the whole thing, like it's happening around me.

Christmas is this thing that happens to my family, whether I want to or not, i just do some work for some money and pay for it. Do what I'm told, and we're out the other side. I suppose if I had enough time to form an opinion on what I wanted for Christmas, it wouldn't matter anyway, I'd be told.

So Christmas sucks balls. I'm with you there.

[Corny]

Thanks @Appleblossom, you're such a kind person.

Working and feeling useful and being a contributor is something people without disabilities take for granted. I read on a thread somewhere that, like me, you too had both parents with MI. Gosh it was a tough gig when you're little and have to be a carer isn't it, and your needs are kind of swallowed up in the drama of it all.

I haven't had a working parent since I was 11 years old. I have seen what it does to a person. I'm so scared of turning into my parents. I have a lot of people in my family with MI who will never be able to work. It makes me so sad. I was reading this article about the housing crisis in Sydney and some of the comments people were making about social housing I just couldn't believe the absolute ignorance of people. I just stopped reading it, it was too infuriating. But that's how a lot of people think. 

I agree that real change is slow. I just don't understand what the government expects people to do, and businesses are all about the bottom line. 

Corny

[Corny]

Thanks @IamNotMyMind. 

It sounds like you feel like you're not really being seen and appreciated. That's really hard if there is a breakdown of communication and you're locking horns with your partner at anytime of the year, let alone this time. You're both contributing to the running of the household and you guys both have responsibility and have split the duties, but maybe you're both feeling frustrated for your own reasons.

It's hard to say what your wife is feeling, but maybe her inadequacies or missing having adult conversation, especially with you, the person she's closest too, comes out in crankiness and grumpiness. Women have a lot of pressure on them to be everything, to have a creer and a family, and it's no walk in the park being at home with little kids. Of course it can be a joy, but there are moments when it can be quite stressful and your world feels very small and you can feel disconnected. I don't have kids, but am friends with Mums and they say this is how they feel.  I don't know how you diffuse her reactiveness and bring the conversation back to reasonable. Maybe she feels she is reasonable, I don't know. 

But it sounds like you feel like the Bank and that's pretty much it. And aren't afforded the opportunity to wind down in your own way after a very long day with anxiety. You're such a resilient person to be able to do 13 hour days drenched in anxiety. I can't imagine being able to do that unless it was in a physical job, like as a greenkeeper or dog walker or something. 

Christmas puts the spotlight on our relationships and we have a tendency to scan back through the year and fret about next year. During other times of the year we can delude ourselves, create distractions or bury the sadness. 

But I was thinking about it this morning over a cuppa, and I think for me what's so hard about this time of year is that it puts the spotlight on Truth. Whatever that Truth is for each of us, none of us can escape its glare at this time of year.

Maybe the Truth of your marriage is getting to both of you guys.

It sucks actually having to feel, doesn't it.

Comfortably numb is so much more pleasant.

Corny

[Hope4me]

I've been where you are @Corny; fearful of history repeating itself.

I've always been a driven person; to strive, grow and face the 'new' with a sense of bravado. Problem is, this turned into risk taking behaviour that coud've ended worse than it has. Thank the Universe for self insight hey?

NeverStart? I love that! Yes, you do qualify for a disability employment consultantcy, though quality support's few and far between considering it's quota's that float their boat.

Since the 80's I've dreamed about being my own boss in a home business that keeps me afloat, is part-time and incites passion within me. Last year an idea come to light, so I pushed my CPTSD suffering self to explore options.

It seems there's a gap in service provision for people suffering the effects of situational distress at work due to many of the issues you've raised, and some; right up my alley. Research showed overwhelming demand for practical and (topic specific) individualised counselling, advice and referral that's just not there. This is nationally by the way.

I open my doors in January. 

Once I stopped focusing on the effects of my MH and started looking at viable options, (for my skillset and personal qualities) my mindset changed. A glimmer of hope appeared to my amazement.

I guess what I'm saying, is to seek out that which enhances what you already possess instead of trying to satisfy the needs of employers who have their own agenda's. Govt factions and the like are driven by stats and money. To me, these present themselves as a matter of course when you fill a need in the community with insight and 'lived experience'.

I can charge what I like, have no funding body to answer to and get to create my own rules. So a once 'pie-in-the-sky' dream has evolved into reality. Who would'a thunk?

There's hope Corny...

Your intelligence and aptitude for mental health issues would be a great place to start. There are so many areas deficient of individualised quality support, I'm sure there's something out there for you.

Helping others has been a problem for me since I remember, but it's what I know. So putting that into the equation 'on my terms', was a practical step.

I so wish the same opportunities for you...

Kind thoughts;

Hope xo 

[Corny]

Thanks @Hope4me,

How exciting and satisfying that you have created something for yourself. So much more satisfying than working for someone else, and having that knot in your stomach that life will repeat itself, or I will be bullied at work again, or just simply become unwell and have to take time off or even worse resign.

You should be proud. Congratulations @Hope4me!

I have thought about this myself. I do have a Plan B in mind, but I think that I even need a Plan C. Even my siblings and I have discussed it, that we should get our heads together and start a little business. Over the years we have had to navigate and advocate for our Mum especially, and it means that we do have a pretty intimate knowledge of a lot of gaps, inefficiencies and inadequacies in supports for adults and children. Even just taking the commute out of work would be great for me. I know that social isolation is really bad for my dissociation, and I can't be tucked away in my apartment for too long, and missing out on the social side of work would be a bummer. But I've also worked in places that haven't been social at all, and even abusive. So it's romantic to assume that work will always be pleasant. 

I would say that I am a definitely not driven person, and I definitely don't take on the new with bravado. I'm a bit of a meek, lost, dreamer, with a lot of tears behind my eyes. But I am a very adaptable person. My Doc said my versatility and eclecticism has been one of my greatest survival attributes. That being rigid in thought, view and who you hang out with makes it very hard for a person to survive what I have been through in life. I know I am adaptable and I am very good at ch ch change. A choo! Excuse me.

I guess he's right, I am quite eclectic when I think of my friends, they're all very different people. Maybe I have strengths I don't realise. It's hard to see when you're in the middle of a mini-episode. The internal dialogue switches to the shame and berating dialogue that was pretty constant because it was being flung at me from the outside and I internalised it. I know it had a purpose but I have become much better and seeing it for what it is, and its non reality. 

I am so excited for you @Hope4me. January is only a few months away and you will be in full swing......Ooooo I can smell the rain coming again. 

I need a good book or a good movie, me thinks. 

I will try and live in H_O_P_E @Hope4me

Cornucopia

[Hope4me]

Bit emotional here @Corny alias Cornucopia, Corndog etc...

As always you've showered me with praise and wonderfulment. Thankyou for all you've written and then some my friend. Sigh...

Personally, I could see you canvassing people to change legislation or creating a movement against the inadequacies of current systems. Not much $ in that I'm afraid though, but satisfying I guess.

I too thought about using family to prop up business support but this could be dangerous ground for my MH well-being. Even though intelligence runs in the family, so does Alpha Female geneology; we'd drive each other cray-cray. 

You mention advocacy; how brave you are. Not even I could be that tenacious or strong, though the thought was there on conception of my idea. It brings back too much; dealing with morons and bastards I mean. I just don't have it in me. Best to teach what's needed instead of doing it for [them].

I'm wondering why you haven't been placed on the DSP hun. At least you'd have more money to live on than NeverStart offers. I know; it's a stretch getting those valuable points to qualify, but letters from support's and psych's 'in care' especially, would surely have to be enough? You don't have to revisit this if it triggers, so please don't comment if it's too much ok. The Centrelink system sucks, sucks, sucks...

I'm wondering; what is it you'd really like to achieve/be if there were no barriers? I had to ask myself this during a self assessment phase. It's difficult, really hard to begin with.

I do hope there's a Mrs Corny for you. How deserving you are...

Sending my kindest and warmest thoughts your way...

Hope xo 

[Appleblossom]

@Corny 

Wow your humour is creative ... corny to corncopia ... is a POWERFUL move.  Sometimes at the beginning of such a move in myself I feel bitterness and oh Yeah .. I wish ... but if the stress can be lowered and space to probe your uniqueness arises ... you may yet find a way and a will in this world.

I have been bitten and am twice shy ... by going up against the big bad guys .. but still here with a bit of fire ... and more caution ...

I believe mental illness diagnoses and treatment or management becomes a way to manage social issues 

 ....re access to resources ...

my parents and sibs stories were full of trauma that cushy people would never have been able to stomach easily.  I used to worry about it being genetic ... worry worry and compensate ...people who had not done science used to tell me that it was almost inevitable ... then I married someone with a degree in science and a diagnoses of Sz.

I am also a bit eclectic ... 

... @Hope4me has some practical points as well as hope

(wow @Hope4me you are an inspiration)

Good Luck with your business in January and into your future.

WOW WOW WOW

@IamNotMyMind I hear you and it is sad the stresses on young families these days.  Today I was at the zoo and talking with a dad of 2 young kids.  He said he spent most weekends there and the kids loved it and it was his way of showing there was more to life than going shopping.

I hope you get through this one and somehow work out a way to get your heart values translated into action and involvement in your family.

[Hope4me]

Good morning @Corny, @Appleblossom and @IamNotMyMind

Firstly Appleblossom, I truly understand why you carry the label 'Community Elder'. I love reading your supportive and inspirational posts. Obviously they're from experience, survival and self insight, not to mention a good dose of assessing the needs of others. Thankyou for your encouraging words...

Hey again @Corny;

I so often read of the desperation to heal your wounded mind and soul through your words; reality and times of dissociation are disheartening for sure not to mention frightening.

I'm wondering if you've delved into Neuro-plasticity. It's a new field compared to MH research carried out over the decades, but has had a barrage of positive feedback from both the scientific and wider communities. I for one found the concept intriguing, so when I explored it further found much to celebrate.

Put into practice, I've actually healed my scarred brain. (At least that's what it feels like) Old beliefs in science said it couldn't be done, but my experience shows results defying the odds; I'm so proud of myself. And; relieved it works.

I had an MRI a few years ago at a time when my poor brain was tortured, which showed masses of scar tissue the Neurologist said would eventually render me vague, and at worse suffering dementia, as well as physically unstable. I was shattered. I've yet to have another one to see if my brain can show physical signs of repair. It's sort of exciting thinking about it.

Not only would it prove him wrong, but could be empirical evidence of tangible change to hopefully provoke forward thinking within his practice. Evidence of a scientific breakthrough or; "It's a miracle!" Hmm...???

Anyway, just wondering what your thoughts are about it.

Hope to hear from you soon...

Love Hope xo