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 Eagle Ray,

I'm glad you found a good GP who gave you some confidence to find another, later. It's certainly a difficult feeling sitting in the waiting room expecting the worst. It's not fear for me, it's exhaustion and anger, resentment and resignation. I keep getting told it's fear or anxiety. No. It's aversion. It's like asking someone to eat a toothpaste sandwich and they have a 5% chance of getting $5 for their trouble after. They know they're going to have a miserable time and probably feel sick and they'll get little to nothing for it, of course they don't want to do it. That's not fear, it's not anxiety, it's basic common sense. I can't seem to get this across to mental health people. Sorry for the rant - I understand being scared to deal with stuff like doctors, it's just not quite where I'm coming from.

No joke about the flaws in the system. I agree about those 15 min appointments (I've rarely been given more than 5-10 mins). They certainly don't engage with you to problem solve. They mostly ignore other health problems too, the "care" is very disperate. Definitely a systemic failure for both doctor and patient. I imagine they have more power than we do to call for change, however. Strike, or something. Can't say I'm surprised re that liver specialist vs naturopath results.

Ah, you're speaking my language about researching the heck out of your own health conditions. It's just a good thing to do, to be informed. It's what I do in between efforts to find those people aligned with my learning/goals. That downtime is essential in being able to push through the enormous barriers, each push flings my spoons everywhere, often leaving me barely functional for days or weeks. You can't keep pushing from that place.

I did find & book and appointment with a naturopath near me who has appropriate education and also experience teaching kids with ADHD & ASD. Her pre-appointment e-mail gave very specific instructions (i.e. ASD-friendly), which I found encouraging. Fingers crossed this helps.

Kind thoughts,

Blue.

[Eagle Ray]

Hi Blue

I really hope the naturopath is helpful. They are a diverse bunch with a wide range of approaches. The ASD and ADHD background sounds potentially promising. At least they usually give you more time, at least 45 minutes or more. The naturopath I go to actually really listens, takes me seriously and wants to problem solve. It was an uplifting experience after countless depressing, discouraging experiences with GPs. I felt validated and treated like a normal human being. I do hope you get to have some genuine help and someone who really engages with you.

 I understand what you are saying about aversion rather than fear. For me it is both. I think it’s very normal to feel averse to a process that repeatedly leaves you let down and frustrated. It definitely sounds like you are needing to try some alternative pathways and find people who are on the same page as you. All the very best!

Kind thoughts to you,

ER

[Clues_Of_Blue]

Hey ER,

Thanks. I hope so too! You're right, and I know there are some kooky ones out there, so hopefully the lady I'm going to see can back up her blurb on her website about having an evidence-based approach. The initial appointment goes for an hour, and the form I had to fill in ahead was fairly detailed about medical conditions/symptoms/history. I'm hoping she can connect some dots the doctors haven't tried to and can maybe recommend a GP who doesn't suck for the bits she can't help with. Anyway, fingers crossed I have an experience like yours.

Certainly makes sense you would feel both aversion and fear. After all I've been through I don't scare easy, but the aversion is strong. The process doesn't just let me down and frustrate me, it often leaves me so exhausted I can barely manage basic day-to-day functioning for a day if I'm lucky or literally weeks if it goes real bad (as happened with that last GP). I often achieve little to nothing for my trouble. Yes, I need other options. The ex always used to bang on about how the definition of insanity is to keep doing the same thing and expecting different results - and yet that's exactly what society expects me to do.

I'm finding a lot of documents and studies on how autistic people experience significant barriers to health and mental health care and have seriously bad outcomes and reduced life expectancy because of it. This is based on the preference for phone calls to book appointments (sound familiar?), often not knowing what to expect during the appointment, no option to send relevant information ahead of the appointment, sensory hell in waiting rooms, stress/anxiety about appointments themselves based on previous bad experiences, and the biggie - problems with communication with either/both the GP and reception staff. It's worth noting that stress/anxiety, sensory sensitivity and being put on the spot in a socially unfamiliar situation all adversely impact communication skills. All those things put me pretty off balance and I struggle to process everything going on and respond with my usual eloquence. It feels like being under attack from the moment I walk in the door.

Sorry for taking ages to reply, it's just been a bad week. Kind thoughts,

Blue.

[Eagle Ray]

Hi Blue

It’s good you have an hour with the naturopath. I think all my appointments have been an hour with the one I go to. He was very thorough going right back to the beginning of my life! His approach was looking at health very contextually and holistically. So I really hope you get someone who looks at things in an integrated way and is easy to communicate with.

 It’s true, there are a number of things about the process of seeking medical help for people with autism that can be especially challenging. I’m ok with phone calls for appointments but I have booked recent appointments via an online booking system which I’ve realised I do prefer as I feel like I’m in control of what’s happening, I can see all the options in front of me on my computer or phone, and I’m not under immediate pressure to respond verbally.

What I’ve often found challenging in interactions with doctors is being able to get across what I want to communicate and feeling like they haven’t fully heard me or engaged with what I’ve said. At times I think I may have a form of auditory processing disorder, as I also cannot respond quickly and easily to what they say, and may not be able to process what they’ve said properly until I’ve left, let alone verbally respond the way I’d like to in real time. Is that kind of like what you experience?

It’s different with the naturopath because he’s a problem solver and lateral thinker, similar to how my brain works. So I find it much easier to follow him and converse. As he takes me seriously and actually listens, and has more time to fully explore things, I feel much more relaxed and that the whole process is so much more productive. I think some doctors would like to work more this way if they could but are just too constrained by limited time and having to work within tighter parameters around what is standard practice in terms of treatment protocols and available options.

 I really empathise with that struggle to process everything on the spot. The consultant I spoke with in 2016 who herself had autism spoke about people with autism often processing in mono. By this she meant we tend to be focused entirely on our own thoughts or we lose ourselves completely as we are so focused on the other person we can’t connect to our self. She called this “all self no other” or “all other no self”. This made sense for me personally.

[Eagle Ray]

P.S. just sending rest of message as think I was running out of space. So I think what I’m trying to learn to do is hold myself and the other together at the same time in an interaction, but it takes some effort. But having said that, it’s easier with some people than others. Interestingly, if the other person is neurodiverse it’s easier somehow.

I hope you have a better week this coming week. Kind thoughts and best wishes, ER

[Clues_Of_Blue]

Hey ER,

It's still a couple of weeks until I see her, maybe the fullness of her calendar is a good sign? She had good reviews, at least. Her prior familiarity with neurodivergent people is a big draw card for me, aside from the leanings toward an evidence-based approach.

Glad you don't struggle with phones quite like I do - when I'm stressed/tired/burnt out that's the first skill to go, for me. Phone calls burn me out like nothing else, so you can imagine my relief when doctors started doing online booking. I agree with everything you said about why online booking is preferable.

Oh boy, I feel you about communicating with doctors. Even at my most straightforward, elequent and insistent they often sieze on the easy part of the exchange ("Oh, you need a script? Sure.") and literally ignore any slightly more complicated thing I try and address. If I push it, they get slippery and avoid what I'm saying like politicians asked where the budget disappeared to, or they get arrogant and treat me like a fool who doesn't know her own body. It's pure resistance either way. I also have some difficulty with audio processing, which can be a problem when I'm stressed or in unfamiliar situations. With a lot of effort I can usually stay on track and be only a beat or two behind in an appointment unless it goes very off the rails.

Communication is just generally easier if you don't feel under attack or negatively judged, more so if you're in synch with the other person. I think that's what you're talking about with your naturopath. Maybe some doctors want to work more the way you mention, I'd like to meet one!

Interesting about processing in mono. I can't say that's my experience, but it's cool to understand more about how you work. For me it's often because there is other sensory stuff going on (and with ADHD my thoughts tend to be screaming at me like the TV and the radio both going at once unless I'm very engaged in the conversation). The other thing can be disengagement with the individual - if our communciation style is out of synch, or if I find them disagreeable or boring (which lines up with what you said about talking to neurodiverse people being easier). That stuff takes up too much brain space.

Thanks, I hope so, too! Kind thoughts,

Blue.

[Eagle Ray]

Hi Blue

I relate strongly to what you describe with the GP experience. It’s like you are directly asking them something and they avoid it. You go there hopeful that you are going to constructively deal with a health concern, and you leave feeling judged and lost. I’ve lost count of the number of times I’ve felt that. I think some doctors start out with the ideal of constructively helping people, but some don’t even get through med school without that being knocked out of them. They’re sort of just getting through the day. I’ve heard numerous accounts of med school being pretty toxic from doctors themselves. There is something seriously wrong there in the current model. The integrative GP I now see is at least more responsive to what I’m saying, but she’s always working at high speed and under time pressure. It’s only with the naturopath I feel I’m genuinely able to address health concerns in adequate depth and actually make substantial progress, in what is a more relaxed environment.

 I’ve read the mono processing thing can also happen with the senses, so when absorbed by one sensory experience other senses are switched off from. I’m not sure if that holds for me, but I’ve certainly had trouble with either being so absorbed in someone else’s words and energy so that I lose myself, or losing the other person as I go into my own thoughts. But I’m getting much better with this. I think it’s partly also related to complex trauma issues in my case too.

Another interesting author I’ve found on processing in autism is Olga Bogdashina. She has a son with autism, is a researcher and seems to have an empathic grasp of the inner worlds of people with autism. She’s published some interesting books.

Bye for now,

Kindly from ER

[Clues_Of_Blue]

Hey ER,

Something very wrong if they're avoiding direct questions/statements about symptoms. Whatever their experience at med school or in the system, taking it out on their patients is not going to fix that - retail is awful, I don't take it out on my customers. It's literally part of their job to treat or refer a patient to someone with more appropriate skills to deal with the problem, or they could even - heaven forbid - admit it's beyond their scope and they don't know what to do. At least I could respect that.

I'm glad your current GP is more responsive. I get that time pressure is a problem for GPs - as a patient I can deal with that, it's when they flatly refuse to acknowledge what you're saying or address what you came in for that I have a problem. As you say, you come away feeling judged and lost (because who do you go to when they're the ones gatekeeping treatment?) - never mind exhausted and extremely angry. Is it in that relaxed environment with your naturopath that you get to the bottom of little odd and chronic problems that doctors won't deign to look at? That's the sort of thing I'm hoping for, and to tie together all the disparate bits of knowledge about my health that are never looked at in relation to one another in a GPs office. I wonder sometimes how many seemingly unconnected things have a common thread.

Interesting about mono processing with the senses. For me, it's more that one may be dominant (usually audio) and the others have to accept a lesser place in the hierarchy. I can relate to trauma affecting human interaction, though not re processing. I definitely don't lose myself in the other person's words or energy - they may spark enthusiasm or discontent or whatever, but I can identify exactly where it came from and why/how. I can get lost in my own thoughts a bit, usually if I'm bored. My thinking when understimulated is like having a TV and radio going at once, blaring two different channels - there is literally never silence/stillness in my mind.

So, works out my prescribed dose of sleeping meds was way too high and I took way too long to recognise the cause of my increased fatigue because it coincided with life circumstances I expected to cause much the same. On 1/4 of the dose now and managing to be at least half awake during the day. Sigh.

Kind thoughts,

Blue.

[Clues_Of_Blue]

Ol' Blue's been in another patch of serious burnout. I mean, my baseline is burnout, but there are times when I go from heavily fatigued to barely functioning. This is one of them. Rolling meltdowns, further loss of skills - I was kind of able to receive the occasional phone call on and off within the last few months, but the last one came with yet another huge meltdown I still haven't recovered from. And they had the cheek to expect a call back after I explained the level of difficulty I am experiencing. "Oh, but you're on the phone now" she says. Yeah, and it harmed me, and a week later I am still not okay. Wanna get any more disrespectful? Initiating a call is on a whole other level, and so this person I explained that to (the call was for access to a mental health service) wants me to call back? She literally asked me to harm myself. I'm done. Society gives you all this grief for not "helping yourself" if you don't chase up GPs and psychs and whatever other services, but they are not accessible to people like me. Being expected to do the stuff I need help with (intensely and repeatedly) to get help is abuse. What is wrong with our society?

[Eagle Ray]

Hi Blue

Sorry, somehow I missed your post from 2 weeks ago. To answer your question re: the naturopath, yes we get to the bottom of those health issues that don’t get looked into with GPs, or specialists. I’ve literally turned around the trajectory of a serious liver disease with him. I was getting nowhere with the liver specialist, in fact heading in a declining direction. I’m now seeing a new liver specialist who fully supports what the naturopath has done and can see the clinical outcome where my lab results have normalised.

 I think various symptoms often do have a common thread as you suggest. I’ve got to the stage of thoroughly doing my own research and presenting it to the naturopath and GP. They look into it and can see there’s something in what I’m communicating and we actually get somewhere. With previous GPs it was like banging my head on a wall, being prescribed meds that were harmful as they insisted on misdiagnosing me when I knew my own body, even prescribing meds that are contra-indicated for the liver disease I have. They wouldn’t even look at the research I’d done which I’d been forced to do on my own because of lack of help. So I get your frustration.

I’m so sorry you’ve had the beyond burnout loss of functioning and meltdowns. I really hope you find the right support from people who get it soon. I agree the world is not set up for neurodiverse challenges that just don’t compute for others.

I’m wondering on what healing and creative things may be possible for you going forward that draw on your neurodiverse strengths? Being a carer and already dealing with burnout this may be a bit much to look into right now, but I’m sure you have some real strengths and skills that are part of your neurodiverse experience and perspective. I’m trying to think this way myself so I feel more the director of my own life, rather than feeling overpowering forces are running my life that I’m forced to adhere to.

You have probably tried extensively already, but wondering if you can insist on email contact based on difficulties with phone calls? I’ve used email to communicate some things to my psych that I knew I would struggle with verbally and it’s helped contextualise later sessions with her.

Sending you warm, encouraging wishes.