Blue's terrible, horrible, no good, very bad day (life viewed through the lens of depression)
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.
You'd think it's a good thing to be honest when I'm not okay. I don't have a history of being taken seriously when I've said it, though. Something to do with autistic emotional expression, I think, I'm expected to be screaming and crying when I say it or it ain't real apparently. Sigh.
Oh boy, I can imagine how intense it would be for you taking care of two sick parents, that's a lot. Of course it took a toll on you, how could it not? As for friends giving assistance... honestly, most of the people close to us are less functional than I am. We've had some financial assistance from hubby's dad and a friend of hubby's, that has allowed us to get the occasional take-away meal or Lite 'n' Easy delivered, so I guess I can't say there's no help, it's just rather sporadic and can't be relied upon. More importantly, he has a hobby day with friends once a week that they pick him up and drop him off for, that gives me a small break. It's as little as I can get by on as far as time to myself goes, but that has been my lifeline. I had to be in seriously and obviously bad shape before that got set up as a regular thing to keep me from going under.
I use support webchat occasionally, and have a counsellor through carer services, though they aren't knowledgeable about neurodivergence & I just end up spending the session educating them. Looking for a new psych, but good ones are hard to find. Haven't come up with much practical support thus far, in terms of stuff like help with NDIS forms.
Actually, hubby & I meditate every night before we go to sleep. It does help. Totally agree about nature, I definitely benefit from that, also exercise. When you're overwhelmed, it's easy to forget all the stuff that's good for you, or to plan things so it's manageable to do it.
Sounds good, I hope you can make that work for you.
I'll keep that in mind.
I do think that’s true, that sometimes someone with ASD is not recognised as struggling as much as they are. I have a friend on the spectrum who has ‘the flat affect’ that is often used to describe how some people with ASD present. When she went through a trauma and ended up with PTSD it was a long time before anyone took her seriously and she started getting help. She was not one who was going to be crying or showing expressive modes of distress. I’m not sure what the answer is but I think in her case she just kept persisting somehow and eventually got diagnosed and received psychological and medical help.
It’s not easy. I sometimes wonder if something similar happens with me. I don’t tend to tell people if I’m not ok, but on the occasions I’ve got the courage up to do so I have had that feeling like I haven’t been heard. I’m not one to cry, scream etc in the presence of another either. I think I learned to shutdown vulnerability in childhood so a lot of it for me is instinctively not feeling safe to open up. I think maybe sometimes stating things quite explicitly, such as saying very directly I’m really not ok right now. I think I tend to minimise the struggle in how I express it.
I’m glad you have some help from friends and that there are friends who can take hubby out once a week. It’s wonderful you do the meditation together each night. Looking back on my time in a caring role, I feel the most important thing is to make the most of moments together and try to take joy in the moment. I know that’s so challenging when a carer, but it is being present with one another in the here and now that make up the memories that sustain you later. When my Dad was hospitalised at one point I was going in each day to be with him. My Mum and brother couldn’t face it because he was depressed and they didn’t want to deal with it. But I would go in a sit with him and bring him food as he would not eat the hospital food they were pulverising as they thought he couldn’t eat solid food, which he could. I would take him for walks with his walker in the hospital grounds and I would see him light up, being able to go outside and see things. He wasn’t allowed out unless someone was with him. That is a memory I cherish now of special time with him and it means everything to me now. Life is made up of those moments. So I think it’s somehow breaking it down into those moments and finding meaning in them, if that makes sense. If we can find joy and connection in the present moment it creates the future moments filled with those memories.
Yes, nature and exercise are so helpful. Wishing you all the strength and encouragement to keep getting through things, but also sometimes there is a need to crash too and recognise when you need extra self-care. I know it’s all very challenging.
Sending you care, kindness and moral support.
Oh boy, I can identify with the friend you described, except without the getting help bit. I'm glad she was able to get support eventually, sounds like it was a hard slog to get there, though.
What you said about shutting down vulnerability and not feeling safe really resonates with me. I'm realising more and more that trauma plays as much of a role as autism in how I express myself and how I am perceived. I don't know if it's like this for you, but I find that to express that I'm not okay I have to dissociate from the emotions that come with it. I can't be lost in the emotions when I'm trying to do something about them, I go into "getting things done" mode to be able to articulate where I'm at and ask for help. Except you know how effective that works out to be when all the neurotypicals want you to be a blubbering mess or it isn't real. Like, how? I'd never do anything or talk to anyone if I let myself stay in that place, it isn't viable. I don't doubt for a second if I was showing the emotions they'd be at me for not being able to articulate what's wrong or what I need. Can't have it both ways for crying out loud! But yeah, if we state our struggles, it looks to others like we're minimising them. We're just trying to survive them, dudes.
Totally agree about being present with the person you're caring for. People get wrapped up in their own feelings or the "duties" of a carer and lose the human connection that comes with it. Like you with your father I take joy in the moments of connection with my husband, whether it's snuggling up together watching a movie, or playing video games together, or helping him into the back yard to sit in the sun... That's the stuff that makes life worth living for both of us. You clearly understand it's the little things that mean everything.
Have managed a bit more nature and exercise recently, the sun is up longer which helps. Looking forward to Daylight Savings. I've zonked out and had to cut back on demands a lot too, as much as it's hard to accept. That includes not coming on here much, communicating is exhausting though I know I need social contact. Hard to balance.
Thanks for being here. Kind thoughts,
What you say about dissociating when you are communicating you are not ok makes total sense. I think the same has often happened with me. Dissociation has been so normal for me my whole life that for a very long time I think I didn’t even realise I was in a different consciousness state to many other people around me. It could explain difficulties I’ve had trying to communicate with doctors where it’s like they haven’t taken me seriously. With the liver disease I have I was telling doctors of symptoms over a 5 year period and that I really wasn’t well. The doctor who finally did more tests that led to a diagnosis wrote in a mental health care plan referral I’d also asked for that I had a flat affect. I did not feel inside that I had a flat affect but that’s how he saw me externally.
So I really understand what you’re saying and I get losing the capacity to communicate if the emotions do pour out. In relation to trauma, I think practitioners who are trauma informed understand about dissociation and get how people are likely to present. Similarly, those with significant experience working with autism are more likely to have an understanding of dissociative presentations, though that can vary greatly. Working with kids with special needs including many with autism, I saw variations in awareness from other staff. I still remember the last little boy I worked with on a relief shift in a primary school who was profoundly dissociated. I remember working to connect with the dissociative realm he was in, meeting him there, rather than trying to eliminate it or force him out of it, which I know can actually push someone even more intensely into a dissociative state.
It’s wonderful you have that connection time with your husband. Something as simple as sitting in the sun in the backyard can be the most medicinal, nurturing thing for the soul, and it’s so beautiful to share that with him. It’s great you have been able to get more time in nature and exercise. I totally understand about the exhaustion of communication and how much effort it takes. I seem to need a lot of solitude which especially occurs during vulnerable times where it Is like a self-protection against the demands of communication. But like you I know I need social connection too. It’s a challenging balance at times isn’t it. I’m trying to honour what my intuition tells me I need at any given moment, and I’m sure you’re doing the same.
I hope you and hubby are having a good week Blue. Take care, ER
On one hand I am glad you understand. On the other hand, I don't wish any of the things that cause dissociation upon you. It's absolutely understandable that you might emotionally dissociate from chronic pain in order to deal with practical matters pertaining to it. Oftentimes from that place I think what we know to be true inside does not make itself shown on the outside.
There is so much overlap between autism and trauma, so it makes sense that dissociation and flat affect are seen in both cases. Where emotional trauma isn't necessarily present in an autistic person, things like sensory or social overload can similarly cause dissociation (I found that I was almost constantly dissociated in my loud and busy work environment, for instance, even when emotional trauma triggers weren't present - which admittedly they often also were). Another thing is that autistic people can experience emotions much more intensely than neurotypical people. Expressions of those emotions get invalidated or gaslit, the usual accusations of being a drama queen or laughed at or whatever, so you stop showing them. The only way to stop showing them is to separate from them. Dissociation = reduction in new traumatic experiences (or at least the really overt ones). Intense emotions are also associated with trauma and with ADHD. So I get the triple whammy to contend with. Of course I dissociate! It's survival 101. Can't do a day's work and make money to put food on the table if you're shaking and crying in the corner all day. Without dissociation I would have long since failed to survive. Sadly that poor kid you helped at work was probably already learning that ugly lesson.
Those moments mean the world to us both. We hold onto the little things among a see of very hard big things. Nature time can be tricky to arrange, but at least the back yard is always available to us. It counts. We have lots of birds and butterflies and bees visiting the fruit trees now and the bottlebrush. I mostly exercise when I'm waiting for hubby to catch his breath between helping him with various daily activities, I'll do some wall push-ups or squats for a few minutes, maybe some sit-ups or physio exercises for my back in bed. Not much, but it helps keep me healthy. Yeah, communication is hard to balance, even honouring my intuition. I don't always get it right, but I'm trying.
It's been an interesting week. Work have finally asked me to either come back or resign. I just wrote my resignation. Got some processing to do.
Kind thoughts to you, I hope you're doing well,
Hello Blue & ER
I'm resonating with the two of you about the shutting down of my emotions, perhaps dissociating when I am struggling, distressed & needing help, or I wouldn't be able to talk & ask.
Trauma in my past, leading me to deny & reject my feelings, to feel untouched by the world around me, & I think, to dissociate during the traumatic events, & to some extent during 'everyday' life.
I had my PDr help with a form to send to NDIS, to have them consider my PTSD diagnosis & my PDr also has written that I have dysthemia & schizoid personality disorder. Personally, I have thought I might be a little neurodivergent, but not enough to be diagnosed.
I will talk to him about wht he wrote.
One thing is true, apparently, I don't show emotional behaviours or expressions - minimally, but I tried so much to not let feelings show. I couldn't, or be ridiculed as being 'too sensitive', 'dramatic', 'exaggerating' & therefore, not taken seriously. I couldn't be taken seriously whatever I did. Self-protection for me was to keep everything out or deep inside enough to be able to believe it didn't have an effect on me.
Too bad I couldn't keep doing that, I somethimes still think.
But, nah, I need feelings to ever hope to empathise or to be compassionate, to care for anyone, even while I don't want people so close.
Getting off topic a bit, I guess.
All I know is I have wondered just what do I have to do to get people to understan & help me when I am in need. Do I have to act in some very dramatic way to get the kind of attention I've needed? It's really an awful thing to hear that all one wants is 'attention', when the inference seems to be hat one doesn't (in their opinion) need it or deserve it, doesn't qualify as needy enough ... then feeling I'm asking for 'too' much.
I'm thinking, choosing who to approach is all important. We need to know they understand us, our conditions & maybe even our pasts.
Thank you again for the very insightful discussion.
Hi Blue and MK,
I think dissociation, as you both mention, is a survival and self-protection response. It is actually quite a logical response in challenging circumstances, especially when the challenges are present from childhood. I could very much relate to what you both said about the struggle internally not being recognised externally by others. I can feel when my system is shutting down, and when that is happening there is no way I can explain my inner world.
What I do know is that people who may present in a kind of disconnected way to others, are often the most sensitive, deeply feeling people. For me there is a crossover of early life trauma, high levels of sensory sensitivity, some autistic-like traits and adhd symptoms. It feels all connected to me. I do wonder if trauma passed down is a primary factor in my case. My parents had some autistic traits too but also had trauma. My brother is highly dissociative and has intense emotional blanks where he profoundly switches off. He’s had former partners point it out to him who tell him he is just “gone”, they see the absence in his eyes.
For me I have made attempts to reach out from beyond the hold of my dissociation survival response, but I can retract back into it in an instant if anything around me feels unsafe. I was in a nearby town recently and very dissociated in the shopping centre. As I stepped outside there was a beautiful, very fluffy border collie at the front doors. I could see him looking hopefully at people going by. I squatted down next to him to see if he approached for pats and he did. So I spent a minute patting his big fluffy coat and I could feel the dissociative symptoms start to drain from me. I started to feel grounded and re-connected. So animals for me can be profoundly helpful, even if people remain largely scary. It is so much easier with a dog!
I’m not sure how those of us with dissociative symptoms successfully convey to others what is going on for us. If you start talking about dissociation with people I think many don’t know what it is or they may jump to conclusions about you from that information that isn’t accurate. I didn’t learn what it was until I was 35-36 and in such a severe dissociative episode in response to a recent trauma that I was searching for answers on the internet about what was happening to me.
I agree MK, it’s awful to be labelled as seeking “attention” and then viewed as not qualifying. I have a chronic tendency to minimise my struggles to actually avoid such labelling. I have a condition called fibromyalgia since I was 13 which like chronic fatigue syndrome is still viewed as not real or some form of attention-seeking by some doctors. I went for 10 years not even saying the word to doctors as I didn’t want them to know and label me, despite the fact it was profoundly affecting my health. Interestingly there’s quite a bit of crossover between fibromyalgia and autism, and many with fibromyalgia have a trauma history.
Sorry, just wrote a lot there! I think it’s a topic that’s not possible to discuss in many settings so thanks for the opportunity to do so. I might do some more reflection on how to communicate dissociative experience.
Hope you are both having a lovely day. Take care, ER
Hey ER & MK,
Just a quick one today. The burnout weighs heavy at the moment and I don't have the energy to do justice to either of your posts right now. Just wanted to tell you I hear you both and I think this is a really important, valuable discussion to be having. I'll be back, maybe in a few days, gotta recover a bit.
I'm afraid the burnout only got worse, helped along rather a bit by my energy vampire of a mother-in-law. I don't hate the woman, but holy cow she's a lot of work I'm not interested in right now. Slowly clawing my way back to some semblance of functionality. Hope you guys are doing okay.