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.

[Clues_Of_Blue]

Hey ER,

Sir Pecks and Mr Feisty have been little guardian angels, certainly. The parrots in your garden sound lovely. Birds really do have so much personality. My two are rescued wild birds, so the fact they have trusted me and come to me of their own volition every day for hand-feeding and just to sit on my head or shoulder is amazing and beautiful. That bond means the world to me.

I don't know when Mozart and the Whale was made, but the last decade has seen so much change and growth in the understanding of autism. As for that criticism about the characters not being played by autistic people... my thought is that it is acting. How often is the person playing the part actually living the life of the character? I do think it's important to have input from autistic people when writing and developing the performance of an autistic character, though. It's too complex a thing to fly blind with. You're right that one or two characters just can't encompass the range of experience across the spectrum. That said, the savant thing drives me nuts. It's not just with autistic people, we see it in media representing any marginalised group. That person who isn't a rich white hetro male just has to be better than everyone else in their field and super useful to be accepted as deserving to exist. Ugh. Hate that trope so much.

Thank you, I certainly hope it is. I'm really glad our discussions have been helpful to you, as they are to me also. Sounds like you're really struggling with masking and wanting to find ways to live your life that harness your strengths and don't wail on your weaknesses. That's perfectly understandable and reasonable. The way you describe your mix of traits kind of fits the reasons I struggled with imposter syndrome early in my journey. There are things I don't struggle with that other autistic people do. On the flip side, there are some seriously stereotypical things that put me on my behind if I'm not careful with my energy. I recommend continuing your research, exploring stims and accommodations for your sensory and social needs and see where that stuff takes you. It's been eye-opening and very affirming for me.

Kind thoughts,

Blue.

[Clues_Of_Blue]

Hey Sleepy,

Sorry to hear the transitions happening are making you anxious. Happy to listen if you'd like to talk about it. Change can be hard - as an autistic person, I relate to that better than most.

You're so right about awareness and hard questions being intimidating for a lot of people.

Glad you're getting some outside time and enjoying it, it's important even at this time of year. Maybe especially now. It's been cold at my end, too, and very wet. Garden is going nuts, and I'm thankful I got a chance and had the energy to tackle some work in the yard to at least make the paths accessible for hubby.

Kind thoughts,

Blue.

[Eagle Ray]

Dear Blue, Sleepy and All reading,

That’s so interesting Blue about Sir Pecks and Mr Feisty being wild birds. Yes, the bond is so special. My friend had a rescued galah who could no longer fly. They had a large aviary for him. He was one from the local area who’d been injured. What was amazing was his friends/relatives from the local galah population would come to visit him. When he was a bit unwell one time they actually brought food for him, like they were taking care of him 💗🦜

Mozart and the Whale was made in 2005. Yes, it’s like those from marginalised groups having to have “special” qualities to be represented at times. I’m not sure that was the case with Mozart and the Whale. I think it was roughly based on a real life couple. But I think the characters would have worked with or without the savant traits in the film. I remember it dealing with a high sensitivity to change, sensory sensitivities etc, attempting to portray from the character’s inner worlds what they were feeling.

Thank you for encouraging me with regard to research. I did a lot between about 2013 and 2017. I have a heap of books I’ve bought. I’m finding the more I’m working through complex trauma stuff, the more some autistic-type traits are diminishing. One was an endless obsession I’ve had my whole life of building categories of things. I have endless strings of info in my head about kinds of animals, countries, cities, towns, houses I’ve seen and what they look like and where they’re located, items seen in store catalogues etc. I would recreate these strings over and over in my head since a toddler up until just a few months ago. I think it was a self-soothing response to trauma. It’s actually now almost completely gone as I’ve released a heap of trauma in therapy. I would compulsively categorise things in groups over and over and over - kind of OCPD which I know can present in autism.

Dear Sleepy, it’s lovely to meet you too. I hope you’re going ok. It’s cold here too and I’ve been mesmerised watching the flames in my fireplace.

Take care Blue, Sleepy and All

[Eagle Ray]

P.S. I just looked up OCPD and I think that’s the wrong definition for me. So perhaps an OCD trait, though not entirely sure that’s right either. Do you have anything like that Blue, where you compulsively create categories of things, like long strings of information on certain topics?

My Dad had his own version of it. He would collect and list registration plates he saw. Not all of them, just the ones that weren’t standard or were standard but spelt something out or caught his attention. These would be written down with a pen and paper he always had in his pocket. Then he would put them onto a document on the computer for no other reason than to have a record of them.

 I feel that for my Dad this was a self-soothing activity too. I’d patiently wait in a car park as he got out his pen and paper to record another one he’d seen, hoping the owner of the vehicle didn’t come along and get suspicious about why he was doing it.

My Dad had similar early life trauma as I did, such as a mother unable to care for him when he was born. He presented with a number of autistic traits. But my sense for him and me is certain autistic traits tend to mainly appear as a result of a stressed nervous system, like the way stimming is often a response to stress. It’s like underlying neurodivergence that produces certain symptoms under stress.

Anyway, so go the idiosyncrasies of me and my Dad.

[Clues_Of_Blue]

Hey ER,

To hubby and I, it's the most special bond we could hope for, our little birds are our world. That's pretty cool about the galah. 🙂

I didn't assume that was the basis of the film, just a general trope that gets bandied about too much. I think even dealing with sensitivity to sensory stimuli and change would have made it unusual in media representation of autism, especially for its time. If it helped you figure some things out, great.

No worries. I'm always one to encourage research, from credible sources. It makes sense that working through trauma would diminish some of the autistic traits - the stuff that makes it into the DSM is the stuff that comes out most when we are stressed or traumatised. I know I'm a lot less rigid and antisocial and repetitive when I'm not stressed out of my mind.

Interesting about the categorising, definitely sounds like a self-soothing thing to me. I'm not so sure about the mechanism behind it, though. I had to look up OCPD - I wasn't familiar with it, only with OCD. The thing with OCD is that it generally comes with a belief something terrible will happen if you don't complete the compulsive action, and that disruption to it causes distress. With autism alone, disruption is more likely to result in a new coping mechanism being implemented, it's more about having an avenue for emotional energy. At least, that's my understanding. I don't know enough about OCPD to hazard a guess at how that works.

No, I don't categorise like that. Endless lists when there is something practical to be gained from it, not for their own sake. That is more about managing executive functioning. I do sometimes (consciously, not compulsively) list the 40K primarchs and legions in my head to break out of unproductive repetitive thinking, though. It helps because it takes some thinking to remember them all, and I get there by way of remembering stories. I had, in fact, forgotten about that, so cheers for reminding me!

Kind thoughts,

Blue.

[Eagle Ray]

Hello Blue,

Yes, the categorising thing I’m sure is self-soothing. I don’t think I have either OCPD or OCD. I saw a film called The Horse Boy (and read the book) about a family with an autistic son. As a 5 year old he would line up toy animals according to categories, such as the family of animals they belonged to. He had such detailed knowledge about that at such a young age. That made a lot of sense to me because my own brain has done similar things since a child. But the relentless need to categorise has definitely diminished over the past year. It’s like the need to self-soothe in that way has really calmed down. It’s left me, however, with a lot of info in my brain. I can run lists of animals for each letter of the alphabet and do the same for cities and towns both in Australia and around the world. The info is still embedded in my brain even though my compulsion to go over and over such info and keep building categories of data has pretty much gone.

That’s interesting about the primarchs and legions. I didn’t know what those things were so had to look them up. Using stories to remember makes a lot of sense. I recently saw an episode of the documentary The First Inventors about First Nations inventions and knowledge systems here in Australia. Using stories as a powerful memory tool was one of the things they covered.

 I hope things are going well for you Blue and you have a lovely weekend ahead 🙂

[Clues_Of_Blue]

Hey ER (and anyone else reading),

Didn't think it had been quite so long since I posted, I promise it's nothing person. The burnout has continued to grow more severe and my capacity becomes just a little bit smaller by the day. I've never found it so hard to keep up with commuincation, it's quite alarming, not to mention isolating.

Sounds like categorising has been an effective self-soothing tool for you, though I guess it's good you're having less need of it now - your trauma work is clearly getting you somewhere. No harm in having a bunch of knowledge in your head, though, could come in handy some time.

Cool that you looked up the primarchs and legions. Stories/narratives are what my mind holds onto best. I think it's common for societies that don't rely on literature to pass on oral histories through stories, it just works better than having disperate facts rattling around. Tie them to something, and they are easier to remember; give them relevance.

Wish I could say things were going well. I'm still alive, that will have to do. I hope you're doing better than I.

Kind thoughts,

Blue.

[Eagle Ray]

Dear Blue,

The burnout sounds extremely tough. All I can do is send kind wishes but I hope you can find some respite from it and some deep rest. I’m sure it is extremely full on in your carer role while also managing ASD challenges. It’s tough enough being a carer but even more so when you might reach overload sooner than others. I hope perhaps you’ve found some additional supports, maybe through the NDIS? It’s good to ask for help if you need it. I’ve found it hard to ask for help myself over the years but I’m gradually learning to do it more. I know asking for help itself can be challenging, especially if it involves making phone calls, dealing with paperwork etc. Sometimes you need support to help you ask for and gain support!

 I am going ok and generally improving. My health significantly worsened for a bit and it was worrying but I was put on a new medication and have improved a lot. I’m currently considering a self-employment option that might suit my neurodivergent brain. I have the classic attention deficit swing between hyper focus and total scatteredness, so looking at creative things I can do with my photography that would allow me to utilise my hyper focus which I naturally go into with both taking photos as well as photo editing. Also, looking at ideas along with that that utilise my tendency to categorise which comes very naturally to me. Too tired to explain further now. But basically I don’t want to be the square peg in the round whole anymore. I’m trying to capitalise on the things my brain actually does naturally and well.

 I hope you are ok. Feel free to reach out whenever you need to. Take care.

[Clues_Of_Blue]

Hey ER,

Let's just say I don't recommend it. Thanks for the kind thoughts. Unfortunately being "on" all the time means no respite, no deep rest, so the burnout continues to worsen every day (and I was burnt out long before my carer role began, so having a quadroupling of responsibilities was never gonna be helpful). I get the occasional day off, but as much as it's better than nothing, it isn't even close to enough. I've seen/read a lot about autistic burnout from people who have been there, and the common theme I'm getting is it can take literally years to heal from. Of course I can't be okay in this situation.

Nope, I had a social worker "helping" with my NDIS forms - that has turned into a mess he has made exponentially harder than it needed to be, helpfully pushing me into a quite significant depressive episode in the process. Nice idea asking for help, but it's a very rare thing for me that doing so doesn't make things a lot worse than they already were. Attempts to deal with the NDIS, along with pretty much everything else not involving immediate survival, are on hold. Honestly, it's kinda meltdown town to even think about it, so I'm going to drop that subject.

Glad to hear you are improving again from recent health concerns. I hear you about wanting to use your strengths in a vocation rather than being the square peg. I had thoughts about self-imployment, but found that the admin and promotion side of it was actually worse for me than what I was already doing. I hope that sort of stuff is more manageable for you, and you can balance that with the work itself.

I won't say I'm okay, I'm just not. I appreciate you checking in and showing kindness.

Kind thoughts,

Blue.

[Eagle Ray]

Dear Blue,

I think it is good you are stating you are not ok. It is necessary to acknowledge. I know the intensity I went through when my Dad was in his final year with advanced Parkinson's disease and my Mum was going through cancer treatment and I was the primary carer for both. It damaged my health.

I don't know whether there is a friend who might be able to give some assistance here or there, even bring some meals? I didn't ask for help with things like that, but I might have found some people were actually quite happy to offer occasional assistance. I did call on assistance from neighbours at times where Dad fell and there was no way I could get him up. I know it is extremely constant and intense.

I feel like it's important to let people know you are not ok, speaking from the experience of not doing so myself and just soldiering on. I know you are already trying to get help with the NDIS and being held up by bureaucracy. The ideal would be having some support from someone knowledgeable about ASD challenges who is also able to provide counselling support in relation to the carer challenges. I know that may be hard to attain though. But I think, importantly, let people know if you are not ok, whether it is a friend, a support line, a carer's association etc.  There may be people on help lines or web chat help who actually have some ideas about how to alleviate some of the pressure. I don't know what else to offer or suggest, so can only send care and moral support.

Actually, one thing that I know can help is taking just 5 minutes, perhaps in the morning, just to sit calmly with yourself and focus on gently breathing in and out, to just settle your system down. For me, any time I can get in nature helps greatly.

The self-employment I'm looking at is one that greatly reduces the need for admin and promotion, as I am trying to keep things as simple as possible.

Please take care and feel free to post any time even if it is just to say "I feel horrendous right now" as it sometimes helps to alleviate some of the pressure just communicating how you are feeling.

Sending you kind thoughts,

ER