Blue's terrible, horrible, no good, very bad day (life viewed through the lens of depression)

[Clues_Of_Blue]

Some of you are aware of my existence by now, but for those who aren't, I'm fairly new to this forum. I've been stumbling my way along with depression for somewhere around seven years. It was triggered by a life event and exacerbated by circumstances since then, which I've done my best to eliminate where possible. About a year ago I changed track with that and made the huge decision to end the relationship I was in. Rough though that was, I finally started to see a bit of progress. I've still had a fight on my hands, to stay afloat and get control of my time and money and my peace of mind, all of which were tied up for a long time in untangling my finances from those of my ex (not his fault, the bank made it really damn hard, and my job and my own state of mind weren't helping).

Now I've started enjoying things again, and am not always instantly down when I'm on my own. I was once a (deliberately) solitary creature who enjoyed my own company and learning everything I could, so it's good to be more like that again. The depression's always there, lurking in the background, but I sometimes go a few weeks at a time without any prolonged episodes. Long enough to start feeling like I'm healing or that my emotions have some concept of cause and effect again. Then down I slam again, sometimes for a day or two, other times for weeks, and it feels like I've made no progress at all. In these periods my mind and my emotions are constantly at war, particularly when I'm alone and/or it's quiet. My mind is calm for the most part, and well aware I'm strong and capable and have strategies and I actively work on those in spite of the depression. My emotions, on the other hand, are running about with flags chock full of negative messages and even though I know it's not (or even close) I feel like everything is collapsing, that I can't deal with it and I just want everything to stop. That's where I'm at, today.

I do have an amazing partner now, who is extremely supportive, and has helped me immensely. My current problem is that I need my friends and family, too. I so rarely have time that isn't ruined by unsociable work hours and also the energy and will to socialise, but my friends are seldom available when I do. In those times I know it may be weeks or months before I can see them again, and I miss them, and that's mostly when I crash again these days. Dunno how to fix that yet, but I need to vent, and here I am. Getting better but having a really crap day.

[Eagle Ray]

Dear Blue,

 I love that you have Mr Feisty on your shoulder. Give him a pat from me (if he likes pats of course!).

 I have found out from the disability employment agency I’m with that I can access a social worker. I’m going to follow through on that. I just have to get through other commitments in the next week or so then I’m in the city for two medical appointments. Then I can see the social worker after that. I’m not one to ask for help so I was initially hesitant, but I’m sinking down into a kind of hell so I think I need to take help where I can get it. I have huge trust issues with people too because of past transgressions, even by people in professional positions who have caused harm. So it takes a lot for me to reach out. I feel I have been silenced all my life and it’s been so hard to communicate. I dissociate heaps and go there rapidly if I don’t feel safe, which obviously impairs communication.

 I do hope you can get some support. Obviously with a psych you can get the 10 sessions with a Medicare rebate. Then you can get a further Medicare rebate with 5 allied health sessions. I always max out my Medicare threshold so by the end most of the cost is covered. But it’s initially a bit of a cost until I reach that point.

 I’m so sorry you had those difficulties while growing up. Yes, your Mum may have been on the autism spectrum but with zero help or info back then. My Mum believed her mother had it. Her mother had severe depression and had ECT treatment. Something was definitely wrong but never found out. After my Mum heard an interview with Tony Attwood on the radio about women with autism, she said that’s it, it described her mother exactly. My mother had involuntary stims that were there from when I was a small child right up until just before she died. I have similar ones. Definite autistic traits in my Dad too. But both also undoubtedly had Complex PTSD as well, which I also have.

 I can understand about the experience of homelessness and how that affects you later. When you have experienced that precariousness you always have that hanging over you as a fear it could happen again. I got down to $1.23 in my bank account in 2006. I’m ok at present but I have that fear that if everything unravels I could be there again. But I have to trust that that won’t happen and I’ll find a way through. I know I’m ok for about 3-4 years but feel I need to somehow generate more income after that, even if on DSP. Yes there is so much to untangle about our development isn’t there. I think neurodivergence has a lot to do with homelessness and struggle. Thank you so much for the recommendation of Patrick Teahan. I will definitely have a look.

Wishing you, hubby and Mr Feisty a lovely evening xxx

[Eagle Ray]

Hi again Blue,

Just thought I’d let you know I just watched a Patrick Teahan video. It was excellent! 👍 I picked out the one on Common Pitfalls in Healing Childhood Trauma as I feel like I’m stuck in a rut at the moment. He is very clear and practical. I will definitely watch more of his channel. Thanks again 🙏

[Clues_Of_Blue]

Hey ER, 

It's pretty special to have him there. Can do. It would be a stretch to say he likes pats, but he cautiously accepts them. Funny thing, he is more willing to let me kiss him than pat him.

I'm glad you can access a social worker. I completely understand and relate to your difficulty with trust, I have had similar experiences that don't make me too willing to ask for help, either. But as you say, applying for disability services is its own special kind of hell, and it's not reasonable for us to tackle stuff like that alone and triggered. That said, no need to rush yourself, deal with the social worker at a pace you can handle. I hear you about struggling to communicate, and about dissociating (though for me dissociating is mostly for sensory reasons). Would it help you to establish dialogue with them by e-mail, or have some stuff written down for an in-person appointment? Or even to video call if it helps you to be in a familiar environment. There are ways to calm the nervous system and reduce demands in the moment. I employ them liberally.

Even with Medicare I'm coughing up around $100 per appointment, which is frankly not sustainable. And I'm on a waiting list for an ND psych currently and seeing an ND counsellor in the interim, who is not covered by any form of subsidy - however she is a million times more helpful than any psychologist has been so far.

Thanks. I'm pretty convinced of it, I see a lot of my own (less common) autistic signs of stress in her. She certainly didn't have any information or support. Dunno how she'll take it if I suggest she may be autistic, though. Not really surprising you see autistic traits in your parents, or that your mother saw them in her mother. It's hereditary after all. I believe my father is autistic also, though he presents very differently to Mum (super lacking in empathy and he always leaned into his special interests to a degree very detrimental to his family). They both bear the hallmarks of having been sorely emotionally neglected, weather that equals C-PTSD in Dad is unclear, but probably, and it is definitely in Mum, as it is in my siblings and I. Unsurprising for any of us, really, yourself and family inclusive. Autistic people are at higher risk of trauma, and our nervous systems don't hold up well to it. That's certainly a disabling factor in being autistic, imagine a world where we were nurtured instead of hurt.

It certainly makes you see things differently, especially paired with a very limited capacity for working. I deep-dived into learning about budgeting and (at the risk of tooting my own flute) you'd be hard pressed to find someone who can make a dollar go further than I can. It took a while of living with an account that looked like what you just described to get there, but I've kept my head above water since I made financial management a special interest. It's good you feel you have 3-4 years grace to work out how to improve your income, that must be a comfort. I have savings enough for maybe a few months after hubby dies, then I have no job to go back to and may or may not succeed at getting the DSP. If I have to go on Unemployment, that would be a disaster for my burnout and mental health, I am very aware I will be unable to meet the obligations. Ugh. Yes, a lot to untangle. Neurodivergence and poverty have a huge overlap, for many reasons.

I'm really glad you found Patrick helpful. The internet can be a real echo chamber, and I value sources like his channel which have new information. I like that he steps back from pathologising and looks into the human experience, also acknowledging trauma comes from neglect and chaos and poverty, not only violence. He's really comprehensive.

May the garden birds give you joy, 

Blue. 

[Eagle Ray]

Thanks Blue,

 I understand from what I’ve been told that the social worker comes to visit me in my own home, or will meet me for a chat in a park, or go for a walk, or whatever. It feels weird in that I never thought I’d get to the point of needing a social worker. I’ve always been fiercely independent. But I think I need to learn to let people in to help me, even though I’m very cautious at the same time which has a lot to do with CPTSD fears and issues.

Yes, the gap you pay is still a lot isn’t it. I’m also paying only just under $100 at the moment after the rebate. I don’t have a regular appointment time but choose to see my psych when I have something specific to work on. At least that gives me control over my budget and I prefer seeing her on an as needs basis when something is pressing, which I experience as a feeling of just having to deal with something forcing its way into my consciousness. I’m glad you are getting the good help from the counselling even if not so much the psych you are seeing.

Yes, how different our worlds would have been had we received the nurturance we needed. An interesting thing I’ve found in myself despite a lack of nurturance growing up is an ability to nurture others, including animals too. It suggests to me nurturing can be an innate capacity. I have every reason to be bitter but I am not. I am exhausted and unwell and I’ve been hurt by my experiences. Yet, I kind of just get my parents and what they did, even if it was wrong. I even feel gratitude for the things they did give me. They didn’t do hugs or say they loved me and I had a lot of volatility directed at me. But they also showed an interest in the world around them when not consumed by trauma stuff. That included interests in nature and music, and with my Dad photography, and those things have definitely rubbed off on me.

It’s fantastic you’ve developed excellent financial management. If you get to the point you are on Centrelink and need to meet obligations, you can go with a disability employment agency where those requirements are much less stringent. You would definitely qualify with your diagnosis. It also supports your DSP application if you are with a disability employment provider. I’ve been with mine almost two years which should increase the chance of getting DSP as it shows Centrelink I’ve ticked certain boxes in terms of trying to get back to the workforce. I still have a bit of money left over from after my mother died, which is the reason I can pay my psychologist and live without major financial stress for at least another 3, maybe 4, years. But I will start to struggle after that. My car has had trouble starting for a while and many other things that may make things harder down the track, so I get a bit scared at times about the future. My car is my freedom and I love being able to just get in it and drive. But I have to trust it will work out.

Yes, I really like Patrick’s approach. I listened to another video of his while doing my dishes last night. He shared quite a bit about his own journey in that one including growing up with alcoholic parents who didn’t provide much caring support. He spoke about his own sensitivities and reactive behaviours that he has gradually overcome that stemmed from what was deficient in his childhood. He is a very clear communicator which I appreciate. I love direct and clear communication which I’m sure you do too.

Wishing you and your family a lovely weekend Blue xxx

ER

[Clues_Of_Blue]

Hey ER,

As long as you're comfortable with those options, no problem. If you're not, you can absolutely suggest alternatives, I've been doing that a lot to suit what I can manage. You're stepping onto a road I've been walking for a while, I am very independent of nature also, for much the same reasons. Hubby's health and the impact on me have definitely pushed me out of my comfort zone on that. It's been a steep learning curve with all this asking for help nonsense!

It is a lot, especially given the people who need it most are typically not exactly rolling in money; costs basically a week's food every time I see someone. Makes sense to see someone as you need. I need way more therapy than I can afford or have time/energy for, so counselling gets slotted in every other month. To clarify, I'm only seeing the counsellor, I fired my last psych because she was making things worse, and am on a waiting list for a more appropriate one.

Seems such an alien concept, doesn't it? I rarely hear of an autistic person growing up with their needs met or even believed or considered. Yeah, I've found that too. I'm rather selective in where my nurturing side is exhibited, but there's plenty of it there for hubby and our little birds. Sounds like you've come to a more positive place about your parents than I have about mine. Best I can give them is neutrality. I suspect the emotional blank I grew up in has a lot to do with the emotional blank I have toward them. There's just nothing there, really. Occasional flares of anger or pity, I guess, that's about it. Better than wallowing in bitterness, I suppose.

Thanks. I figure if I can't work a lot and need money to live, being frugal is where my skills need to lie. I've heard mixed things about disability employment agencies, some are good, some like to throw really inappropriate job options at their clients which they can be penalised for refusing. Makes me a bit cautious about them. Hoping the bereavement payment will give me a small reprieve, couple of months maybe, to step back and have a proper look at what I can do going forward to best facilitate my healing and financial safety. Not to invalidate your concerns, they're perfectly reasonable and valid, but from where I stand, having 3-4 years of stability would be an absolute miracle I could do so much with. You're in a far better position than I to get the future working for you. Sure it's scary to think about what lies ahead, and it's certainly worth working on a plan for what happens next, but that's a significant amount of time to do it and to find help and support. I hear you about car trouble, too, and the freedom of having a vehicle. My own car is falling apart and I expect it will cost a lot to fix. So my mind is swirling with the knowledge that those repairs will probably cost me enough of my savings to lose me 1-2 months of the very short period I'll have down the track to secure a stable income. Really highlights how shaky my financial future is.

Yeah, his lived experience and openness about it make all the difference to his approach. I do agree about the direct and clear communication, of course that is something I value. One of his videos that I found really helpful, and again it was something I hadn't seen addressed anywhere else, was about understanding and validating one's childhood experiences when there are gaps in memory. I have huge gaps in my memory, and it's not an uncommon thing among people dealing with trauma, so I got a lot out of that.

Kind thoughts,

Blue.

[Eagle Ray]

Hey Blue,

Yes, the cost for psych help can be significant. Something I have done is treat it as just one component of help and supplemented it with other things. I've found there are quite a few online summits, webinars etc that are free and have used those quite a bit. There's been a lot on trauma. Though the free versions are just available for a limited time and in signing up to get access they of course advertise purchasing them. But you can ignore that and just watch the free versions. I did find a counselling service in my region 2 years ago where it only cost me $30 with my Centrelink card. But after a couple of sessions I could feel the counsellor wasn't the right fit. Getting someone who is the right fit is integral.

With regard to disability employment agencies I have had mixed experiences with the one I'm with and have worked with three different consultants there. One job I nearly went into through them was at the local hospital and hospice. But they were 8 hour shifts there with very little break and I was told they could not be broken into smaller shifts. I also had carer burnout and with the extreme fatigue and bouts of illness I'd been getting I knew I just couldn't do it. When I had to stop work in 2005 because of an extreme pain I was with the Commonwealth Rehab Service, back when the government actually took care of what the disability employment agencies do now. The consultant I had was outstanding and with his support I retrained as an education assistant and did get back to work. I cried with gratitude when driving home after my last appointment with that consultant. I will never forget his kindness. So if you are lucky you can get someone really good to work with and it can make a profound difference. But unfortunately there can be some average experiences too. I have just reached a point of awareness with my limitations and the DSP has become the only option I can see at present. I am super keen to do the Self-Employment Assistance Program but my body has simply said no again. It is hugely disappointing as I would by far prefer doing the SEA Program but it seems I just can't.

Yes, I am very lucky to have a bit of a buffer at least. My main concern is protecting myself in relation to the autoimmune disease I have which is progressive and gradually destroying the small bile ducts in my liver. I was heading into fibrosis and it was working with the naturopath with the advanced microbiome testing he does that has started to reverse that process. I am on medication that is also helping restore the blood-brain barrier as the toxins from the bile ducts breaking down were crossing into the brain and causing quite severe neurological symptoms. They still leave me with bouts of illness where I am incapacitated. So I still feel very precarious. I know the only person who can protect me is me. It is up to me to keep myself alive and able to function into the future. I find my love of photography is a lifeline. I have to keep my spirits going. If you do find yourself on Centrelink and struggling, I would ask to access the social work services available. That will not cost you anything and that is what I am doing soon. I imagine they can provide some advocacy and be someone to really listen to your concerns. The employment consultants have half hour meetings with you every fortnight, but those are limited in terms of dealing with deeper issues.

The disability employment agencies usually have a website with stories about their clients. You will likely find some on there about people with autism. One of my consultants was assisting another client with autism. Neurodiversity is something they have a growing awareness of, so I think you should at least find some support and understanding.  I think the important thing if you go down that path is not to be too discouraged if you don't get the ideal help straight away. Try to use their services to serve you, if that makes sense. I know it's not easy and there are significant barriers often not seen and understood by those not living with what you are living with. But I think it's important to keep advising them of what your limitations are.

But more than anything, keep doing the things that help you now, like the meditations you do with hubby. I think all those self-care things that we do now help the future too, if that makes any sense.

Take care Blue,

ER

[Clues_Of_Blue]

Hey ER,

It really can. Like you, I supplement that help with other resources too. Not webinars/summits (I may look into those), but channels like Patrick's, a lot of research/articles, contact with the autistic community online and sometimes using crisis support webchat. It'd be nice not to have to put in quite that much work, but I'd probably be doing it even if I had more therapy sessions. That burning desire for knowledge is always there.

I guess it's like any service, you get good providers and bad ones. My only worry is the high stakes and what it could cost me if I get a bad one. A bridge to cross if I get to it. I'm glad you had that one kind person who really helped you. I didn't know there was a Self-Employment Assistance Program, cheers for that little tidbit of information. I'm sorry you don't feel up to following that up. I don't know if that or going back to study are options I could manage down the track - certainly not full time, so I'd still have to be mindful of that. There are good reasons we are both considering the DSP an appropriate option. There's a point at which you've tried so hard for so long against utterly unreasonable odds and just need to stop and heal.

I can certainly understand your concerns about your health, sounds like a lot to manage, especially given the experiences you've related re doctors along the journey. Of course the path ahead looks scary. I am glad your naturopath has been so helpful with this, though, there's some hope in that. I've found my naturopath (the new one is working out great) has done more for my health than doctors have, too. She's got me on a new supplement which has helped improve my mental focus, recently. Maybe a 10-20% improvement, but given the struggle I have with it, that's actually quite significant in practical terms. Funny what a few extra nutrients can do.

Until recently I had no idea I could access social workers for anything, they were just this nebulous concept to me that I thought of as being available to other people; it was a curly road for me to get any help on that level. I'd certainly make use of that help to deal with Centrelink in the future, and keep in mind disability advocacy services as a back-up. I hear they are frequently involved in DSP application appeals, as they are often rejected the first time.

Neurodiversity awareness is slowly growing. Very slowly. I know I'll have to deal with people along the way who don't get it (I've dealt with many such already in various areas). I guess I'm lucky that I have the assertiveness, knowledge and vocabulary to educate people and stand up for myself along the way, exhausting though it is. Yes, there are certainly some great big invisible barriers for people like me to deal with, and making service providers understand or at least accept that is seriously hard work.

Yeah, the self-care is important at every step of the way. Building self-compassion and resilience and all that. Same goes with your photography, leaning into things that give us joy help motivate us to keep putting one foot in front of the other.

Kind thoughts,

Blue.

[Clues_Of_Blue]

Hubby in hospital, demands vastly exceeding capacity, having meltdowns and serious emotional dysregulation. There goes the holiday and our time out from stress, I guess. It's not just back, it's redoubled. Neat. 

[Eagle Ray]

Hi Blue,

I’m sorry hubby is in hospital and you are experiencing the emotional dysregulation. Have you thought of contacting the BB webchat? I know you won’t want to call on the phone. I find when I’ve been particularly emotionally dysregulated just communicating with another person has helped to bring some regulation back.

I’m not well myself at the moment and haven’t been able to keep food down the last couple of days so it is a bit hard for me to hold regulating space for someone else at present, but I would reach out to any contacts you have. I just had a look at autism organisations and I can see a page on the Amaze website that is about help for adults with autism. They have Amaze Autism Connect advisors who can be contacted via email and webchat as well as phone. I’m just wondering if that may be another helpful resource on coping with emotional dysregulation when overwhelmed and dealing with challenging circumstances? I’m not allowed to post web links here but if you google something like Amaze Autism Connect Adulthood you should be able to get their contact details. You may be familiar with them already. I just wondered if they may have some ideas and resources that can help you at the moment.

I wonder too if you can access that space within yourself where you do the meditation with hubby? See if you can reconnect with that presence. If you are with him in the hospital perhaps you could do that with him there too. I know it’s very hard. Take care Blue and thinking of you and sending you kindness and strength,

ER

[sbella02]

Some great advice, ER. 

I echo these condolences, I'm so sorry to hear that your husband's not doing well, and that it's having an effect on you as well. I can imagine it would take quite the toll, it's never easy having loved ones go into hospital. Hospitals aren't fun. 

Do you have loved ones around you to support you emotionally and (if you need it) with everyday tasks? I've had a few family members go into hospital in the past few weeks, and I know how support from others in your life can be quite impactful. 

If you're spending quite a bit of your time in hospital with your husband, you could always take a small activity like a crossword or sudoku to boost your mood and keep your mind a little preoccupied. That's what my family did when one of our family members went into hospital the other week. It gives you something lighter to focus your attention on for a little while, if you are able to.

Wishing you all the best. I hope your husband is okay, and I wish you both well during this time. 

SB