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,

Thanks. Doing our best, though it's still proving difficult, there's always so much to do. Two long hospital days this week, those always really drain us. Not enough time in between to regroup and be ready for the next one. Ugh! The woman I met with talked a good game. Haven't heard peep from her since, though. If something happens in less than a year, great. Honestly, I'm beyond expecting anything. I do really need that NDIS funding though, it would help with paying for therapy and ready meals, and just those things could take a huge load off. But nope, not happening.

We've decided to block out a period of time for a holiday. Can't go anywhere of course, not with hubby's immune system as it is and all the meds and equipment we'd have to lug around, but we can say no to admin and appointments. Funny how it's taken two years to even think of it as a possibility. And the idea of simply laughing had fallen off our radar. The way everything keeps coming at as as urgent and pressing and right in our face all the time had just pummelled what little executive functioning we have into non-existence. It's like we can hardly see past this very moment and fixing whatever new problem has arisen to scream at us, we have struggled so hard with forming boundaries on this stuff because it never stops and we can't afford for him to run out of meds or whatever is happening. Having been a carer yourself, I'm sure you know how the job side of it creeps into every moment of your life. How did you find time to just exist? I'm kinda worried the outside world will come crashing in on our holiday and I'll have to fight for that little week of peace, the first in two years. Aaargh!

Hope you're doing okay,

Blue.

[Eagle Ray]

Dear Blue,

Hospital days can be exhausting can’t they. Do you find anything helps, such as even being able to take a break in the hospital cafe? I know the environment as a whole is like a world unto itself. I hope you have encountered at least some nice hospital staff along the way. I have found one, kind friendly nurse can make a world of difference. I remember bringing my dad home from hospital one time and the nurse was so kind and made a fuss of him. She insisted he go out in the wheelchair but in a way that was so kind and supportive. I could see him lifted by it. It was very hard at other times, but every time there’s a bit of kindness it really helps.

 I’m glad it sounds the woman you met with was helpful but it would be good if you had clearer ongoing support. I just don’t know what to suggest with getting the ball rolling with NDIS. I’m wondering if there is another way to access support for meal deliveries, as a carer? I can’t remember which state you’re in but I can see Carer’s Victoria has partnered with Live Life Foods. It looks like you still pay but get a discount if you are a member with Carer’s Victoria. I have no idea what it’s like or if it would be worthwhile for you. Just trying to think of non-NDIS things if that’s not currently happening.

 I agree that blocking out time for a holiday break away from everything sounds like a really good idea, even if it means not actually going anywhere. It’s like giving a do not disturb message to everyone. You could at least aim for that and hope they listen and let you fully have that break. Even just saying we are not responding in this time as we have to just focus on ourselves for this week. So letting them know in advance and just not responding (unless of course there’s some absolutely necessary reason).

Looking back myself I just remember having to respond in the moment over and over while in a carer role. At certain points both my parents were off to hospital, dad for extreme dyskinesias and Mum for complications from chemo. I found I didn’t have time to reflect at all. So remembering that I would say looking for pauses like you are is really important. Everything got out of hand very quickly with my parents. Mum starting cancer treatment seemed to send dad into a deteriorated state. I know he was worrying about her. So it was like a kind of spiralling. I had no idea my life would descend into survival mode so fast. I think doing the meditation you have mentioned previously that you and your hubby do is really valuable. Just coming back to the present moment. Enjoying that moment which can then help to create the next moment in a positive way. I understand it’s really challenging. But finding anyway to slow down can help. It feeds positively back into the nervous system and well being.

Some friends of mine, a lovely couple, do meditative chanting and voice work stuff. They meditate every night. I know I should be following such practices more but I struggle in isolation. I’m going through a difficult time at the moment and kind of have to inner-parent myself. I find it hard to reach out when I most need help too. So don’t be like me, reach out whenever and wherever you need to!

Post here whenever needed. Sending love and support to you and hubby,

ER

[Clues_Of_Blue]

Hey ER,

Yeah, full on sensory/social overload for me. And unpleasant for him for obvious reasons. Kindness doesn't go astray, as you said, but we still get so burnt out. Ended up rescheduling his second appointment this week, it was way too much. 

Well, she said things that sounded helpful. I haven't seen any evidence of any action on anything she said. That's been the standard from the majority of people we seek help from. I did get some funding for meals from Carer's SA initially, then the next person said "nope, we don't do that" and it didn't get renewed for the next funding period. As I get less and less able to manage cooking, our food costs are skyrocketing and the support is gone.

I'm thinking maybe an auto-email in that time to say I'm "out of the office" as it were and will respond after X date. That will have to be enough, I'm not running around to every incompetent we deal with who doesn't hold up their end of communication anyway to tell them my plans. Nor do we need to explain ourselves for being unavailable. I'll deal with emergencies if they come up, and that's the extent of the admin I'm doing.

Yeah, that's the sort of experience I'm talking about. I fully empathise with how you must have been feeling at that time. Those phrases "out of hand", "spiralling", "survival mode". Those really typify the experience of a carer and the loved ones we care for, don't they? Sometimes I feel like all I do is run around putting out fires (metaphorically speaking).

Funny you should mention the meditation. Everything has been getting away from us and we've really slipped with the meditating - like everything else it was just feeling too hard. Only in the last few days have we started coming back to it. We're trying to claw our way back to a place of peace. Blocking out not just that holiday, but week-ends or periods of 2-4 days wherever we can, to stop and focus on ourselves and Mr Feisty.

It's definitely easier to keep on top of that stuff with someone to share in it. It could help to remind yourself of direct, immediate benefits you get from it (not just long-term benefits), and tailor your meditations to how you're feeling. For instance, hubby likes the ones that call him to the present moment, they're calming for him. I like body scans because they are active and focus my attention, which gets away from me real fast if I'm not properly engaged.

Sorry to hear you're having a rough time, you're welcome to talk about it if you'd like to. That reparenting stuff can be hard, can't it? I find reaching out (for practical assistance) ends up making things worse more often than it makes them better. Emotional validation is another matter. It's important to be able to talk to someone. I tend to only do that when I'm really struggling, which is probably a bit late. Always juggling where I need to spend my energy most.

Kind thoughts and thank you for your support,

Blue.

[Eagle Ray]

Dear Blue,

Yes I don't think you need to explain yourselves with regard to needing the time out for yourselves. Everyone has a right to that personal space. I used to think I always had to respond to people and straight away too. But I'm gradually learning it is my choice if and when I respond to people. While there are times it is obviously appropriate to respond, there are times where it is ok to let go of contact for a while.

I really relate to the running around putting out fires analogy. That was exactly my experience over a long period of time. It was just like impulse-response because there was another crisis and I had to act immediately to deal with it. So carving out times wherever you can to find peaceful space is extremely valuable.

It's great you have been able to get back to the meditation. It's really good to have that time with Mr Feisty too. Animals are so healing to be around and such a wonderful presence. I'm sure he is a delightful chap. Parrots are so intelligent and have such wonderful character.

I used to be a good meditator in my twenties and the first half of my thirties. I've struggled with it since due to some trauma stuff where it is hard for me to do (it's very hard to explain this in words). However, I do find certain spots in nature enable it and make it easier. Being by the ocean helps a lot.

I do understand what you say about how sometimes reaching out for help actually makes it worse. That's happened to me in relation to medical help which I've just been experiencing and have experienced many times before. It tends to happen when you have complex health issues the doctor doesn't know how to respond to, or even know just how to be present with you in a way that would help them know how to respond.

Emotional validation is a very important thing everyone needs. I recently heard a recent song of Joan Armatrading's called "To Anyone Who Will Listen". She wrote it after reading about a man who had been through a hard time and just wanted someone to listen, not to judge or tell him what to do, but just listen. She was moved my his story so she wrote a song about it.

Kind thoughts to you and hubby too, and Mr Feisty of course xxx

[Clues_Of_Blue]

Hey ER,

Hubby reminds me of this regularly, and reminds himself too. As two disabled people who have been expected our whole lives to function like we're not, there's definitely a struggle against feeling like we're expected to justify every aspect of our existence to others. The bigger struggle I have against responding straight away is the ADHD impulse to "deal with this before I forget". I'm getting better at putting in reminders to deal with certain things at a better time, and with important people/situations I may simply let them know I'm not up to tackling whatever they've asked of me right now and will get to it when I'm able. Helps a lot.

Yep, that's exactly what it's like. That said, I'm actually better at carving out those moments in times of crisis than with the mundane day-to-day management of things. Urgency creates clarity and hyperfocus (the upside of ADHD). Everyday drudgery muddies everything and I get overwhelmed and confused.

It's been good. Meditative journalling, too. I play a game called Playne, it has a meditation where you can just write whatever and then feed it to a bonfire - it doesn't save what you write. Super therapeutic, I highly recommend it. Yes, Mr Feisty is a joy, he is the heart of our little family. Not a parrot, but very intelligent and so much personality. We adore him with everything in us.

I'm sorry your trauma makes meditating hard. Nature is definitely healing and helps with many things. Do you have easy access to the ocean? It's worth noting that meditation doesn't have to be "clear the mind, breathe deep". There are things like focus meditation where you can walk and just notice the sound/feeling of your feet on the ground, or you could draw a picture or engage with something sensory like playing in the sand. I've had to look at alternative ideas to work with my neurotype.

Oh boy, that's a tale I hear far too often. I wish doctors were willing to just listen and work with patients. They're extra bad with autistic people, just to make it more fun. Can your naturopath help, or is this beyond their scope?

I don't know the song, but I like the concept of it. I lean toward being a "fixer", and have had to learn that it's not always appropriate. Validation is... well, valid.

Kind thoughts from my little family 😊,

Blue.

[Eagle Ray]

Dear Blue,

 I very much relate to what you say about urgency creating clarity with ADHD. I almost certainly have ADHD and although I can get feelings of overwhelm, when things are urgent I kick into action nonetheless and hyperfocus. But run of the mill everyday responsibilities and tasks can be hard for me to organise. I remember an emergency at work where my co-worker got scared and ran away. I had to handle the entire thing by myself which involved a crime situation, dealing with a distraught person at the front desk, and filling out police and incident reports while still attending to other customers coming to the desk. Somehow how I did it all by myself. But organising and managing everyday mundane things can be really hard and I can feel lost and confused with it all.

The game called Playne sounds interesting. I might have a look at it. I can imagine it being very therapeutic feeding things you write to a bonfire! I’m sorry I called Mr Feisty a parrot when he isn’t one. I’m not sure where I got that from. Is he something similar like a cockatoo? Sorry if you’ve told me before and I’ve forgotten! I’m so glad you have him. I really love birds and seeing them in my garden daily is a blessing.

 I do have easy access to the ocean. My favourite ocean place is a 10 minute drive away. I do sometimes do a kind of meditation there. But I think my main meditation now is like the walking and grounding you describe. Some days when I’m really not well I’ve just taken a towel and put it on the back lawn and I just lie there looking at the plants and birds. It’s nice to feel the warmth of the sun which I do outside the high UV risk times. Even now I can hear the breeze outside in the trees which is therapeutic to me.

My naturopath has been the most helpful person I have dealt with in terms of health. He has profoundly listened to me and worked with me to problem solve things. He has been way more constructive and evidence-based than the doctors. But I am applying for the disability support pension at the moment and unfortunately naturopaths do not count as far as that is concerned. I have just found who I think might be a helpful GP though who I’m seeing in 3 weeks.

 I think I have been a bit of a “fixer” in the past but I’m starting to shift a bit now. I was conditioned as a child to solve problems for others so I thought it was my job. I think validation is often the best thing we can give anyone. It is incredibly powerful in itself and then that often is enough encouragement for a person to find their way through their issue. I’m still a bit of a compulsive helper, but I’m slowly learning to step back a bit. I hit an exhaustion wall some time back and my system realised I have limitations in how much I can give.

I just rambled away there! I hope you, hubby and Mr Feisty are having a lovely weekend.

Hugs,

ER

[Clues_Of_Blue]

Hey ER,

That hyperfocus can be a real life-saver. Very relatable everything you said, though I'm sorry you got stuck with that emergency situation on your own, that still sucks. I'm finding even the ambulance/hospital stuff with hubby has happened enough at this point (and tends to involve a lot of sitting around waiting on doctors) that a lot of it is getting labelled by my brain as mundane and I'm getting a lot less of that hyperfocus benefit now. It's not good.

I've found it helpful. It's on Steam, for a bit over $20. All good, I haven't mentioned his species. As much as I would love to tell you all the details, he's a distinctive breed and I think his species would give away my identity. Suffice to say, a rescued wild bird and not a variety of parrot/cocky. We think of him as our son, not our pet, and I thank him every day for being the amazing little bird he is. I'm glad you get joy from seeing the birds in your garden, they really are beautiful.

I'm glad the ocean is close to you. Grounding meditation is as valid as any other kind, you're making the best of what works for you. Sounds like the time lying in your garden is healthy mindfulness practice, too. Even that level of contact with nature can be really healing.

That's certainly the impression I got from our conversations. Ah, gotcha. The system wants GP reports. I want to apply for the DSP myself at some point, but I have neither a consistent GP nor psychologist, so I expect to get precisely nowhere with that. Never mind that I had hoped to have a support worker by now to help me deal with stuff like that, but the NDIS continue to ignore me, and that person meant to be helping has been twiddling her thumbs. I sincerely wish you luck with the GP and the process of getting onto the DSP. 

It's understandable that you'd have developed that mindset, though regrettable it was expected of you. Parents really do make things harder for us. I didn't have that, but I also had no guidance or help with my own problems so I had to learn to fix them all myself. I guess it's become my love language, I'd love someone to offer good ideas to ease my struggles (which rarely happens, or at least not beyond really elementary suggestions that actually make me angry because they're so obvious it's insulting that someone would think I hadn't tried them long ago), so I show care by offering ideas that are outside the box or that deeply consider their unique situation. That said, as I've hit walls and found sometimes others just can't come up with better solutions than I can on my own, it's turned out that validation has been super helpful in working through that frustration and getting unstuck in my thinking. It's been an exercise in learning a bit of emotional intelligence. I'm glad you have been able to step back a bit on the helping, we definitely can't pour from an empty cup.

Nothing wrong with a good ramble. Our week-end was pretty good, thanks. May you have opportunities to enjoy the ocean and the birds. 🙂

(*hugs*)

Blue.

[Eagle Ray]

Hello Blue,

I'll have a look at Playne. Yes, I totally understand about Mr Feisty. Just so glad you have him and it's beautiful you think of him as your son.

If you do get to applying for the DSP, the fact you have your diagnosis and are receiving support from the NDIS (at least in theory even if it is not manifesting materially at present), that will definitely be of help. With regard to conditions under mental health (if that is where they place autism) they need a report from a psychiatrist or clinical psychologist. I don't know whether the psychiatrist who diagnosed you could do that or if it would be of greater benefit to have an ongoing relationship with a clinical psych to do that. But that is a bridge to cross if you do go down the DSP path in the future. I am not enjoying the application process at all. It is triggering me for a variety of reasons. I feel a loss of agency in the process. Yet I feel it is the only option I have now so I have to endure through it.

Yes, I think sometimes the best solutions are the ones we find ourselves, and to be validated in that process can be what helps us to get over the line. Like we just need to be validated to give us the confidence that we are solving our own issue. We just need that sense of moral support. I think that is actually what a good, healthy functioning parent provides. They help their kids know how to manage just by being there for them with unconditional love and positive regard, and it also helps if they are modelling healthy, functional behaviours themselves. I think kids then just absorb that and grow their own innate ability to manage in healthy ways. My parents were frequently disintegrating, fighting with each other and collapsing in volatile rage, so I didn't have a good sense of how to manage. Not only that my mother made me her counsellor/confidant/parent and when she was angry a punching bag. Otherwise I was invisible. My Dad just lost it verbally and physically. Because I had to parent my mother from age 5 I became like an adult very early. I had to think for her, help her solve difficulties and comfort her. Those were my assigned roles. I had no one to support me though. So to this day I have an overly functioning adult self and an under-functioning child self that never got to develop properly, but I lack a balanced middle ground. I am either kind of hyper-functioning or not functioning (a bit like the ADHD situation I described before - I think the two things might be linked in my case). Anyway, it sure can be a lifelong learning process figuring this stuff out.

I'm glad you have had a pretty good week. Thank you for your wishes about enjoying the ocean and birds. I went to the ocean late yesterday afternoon actually. I also managed a walk in the woodland across the road today. I saw quite a few kangaroos, a cute little bandicoot on the path and lots of birds.

Very best wishes and kind thoughts to you all 🙂

ER

[Clues_Of_Blue]

Hey ER,

I hope you like it, if you give it a go. Thanks. My beautiful son is sitting on my shoulder as I type. 😊

The diagnosis is the main help. Many other applicants have told me having NDIS didn't make any difference for them - I expect getting access to a clinical psychologist and occupational therapist through it, should that ever happen, would be the relevant parts of it. Given their absolute lack of help, I am working on accessing those things out of my own pocket for the time being, though that will mean I will have very infrequent access based on affordability (or lack thereof). If I wait on NDIS, I think I can forget about getting the services I need. I'm sorry you're feeling triggered by the application process. Unfortunately from what I've seen in the autistic community, it is triggering for the majority of us. It calls upon everything someone with a communication disability either struggles greatly with or outright can't do, we get ignored and/or invalidated and basically asked to justify our existence over and over again. You know, full frontal repetition of the relational trauma we've been dealing with our whole lives. Can you access a social worker or disability advocacy service to help you get through the application process?

Moral support is part of it. For me it is mostly that I need to clear away the obfuscating emotions that are getting in the way of more rational thinking - I definitely get in that stereotypical place of repetitive rumination that comes with autism, especially when I'm stressed or angry. Yes, I'd say that and behavioural modelling are what healthy, functioning parents provide. Kids absolutely do absorb what they see as well as how they are treated.

I'm sorry to hear you had those experiences as you were growing up. The coping skills you learn to navigate rage and violence and parentification can really turn on you in adulthood. It was a bit different for me, Dad was mostly absent and Mum was heavily depressed and I now believe in her own autistic burnout - there were occasional fights between them, but mostly their relationship was so cold, neither one of them seemed to know what an emotion was, except maybe misery. Mum wasn't able to manage at home well, and my siblings and I were left from a very young age keeping secrets about how we lived - we couldn't talk about our home lives or have anyone over. Not a great way for an already socially handicapped kid to make and keep friends, I can tell you. I can relate to playing the counsellor/confidante, though that started in puberty for me. Oh boy did she have trauma in spades! No-one to share it with but us kids. I got less invisible then, but it wasn't an improvement. She was kinda paranoid and controlling and dysfunctional. We wound up homeless briefly before we got public housing. It was a mess. My sister had left by then and my brother kind of ignored it as much as he could and got about his life. I got to laugh with him at least, even if he wasn't much support beyond that. I definitely relate to the over-functioning adult and under-functioning child selves. Mostly I got to over-functioning so I wouldn't find myself homeless again, I didn't enjoy it much. It would be fair to say many neurodivergent people have a rich history of trauma and our executive functioning and emotional development are impacted heavily by both. Definitely a lot of learning needed to untangle it all.

Oh sweet, I've only once seen a bandicoot, they're really cute little fellas. I'm glad you got to enjoy the wildlife.

Kind thoughts,

Blue.

[Clues_Of_Blue]

Oh, I wanted to suggest a YouTube channel I follow. It's hands down the best resource I've found so far about childhood trauma, and it's helped me a lot in unravelling some of my own patterns, behaviours and dysfunction, and which things I struggle with may not be autism/ADHD (or not one of those alone). It's Patrick Teahan LICSW.