Category: mental health

Autism Acceptance, Awareness and Awesomness Day

I will preface this post to say I don’t have a formal Autism diagnosis, and I’m trying to be brave enough to raise it with my DBT therapist (maybe this is the week) but I do believe in this world of mis-diagnosis and gatekeeping of diagnoses by “specialists” with big books, self-diagnosis is valid. I’m still pondering if I’m #actuallyautistic, either instead of or alongside my Borderline Personality Disorder Diagnosis, and learning about the experiences of other women and girls growing up without or with an autism diagnosis hits me in so many feels – ie I could be that little girl being misunderstood, trying to fit in, trying perfection to please others. Anxious and confused but somehow masking and muddling through, despite the emotional pain.

Having a Speech Pathology qualification and experience has NOT helped me in my understanding of my possibly autistic self. Too much medical model, experience being a diagnosis gatekeeper or at least working amongst them, working within the DSM, and the deficit models that diagnose because of trauma induced behaviours. It also moulded me into not believing Autistic adults were as capable as many of them clearly are, again working with people because things are going wrong in their lives, often to the inconvenience of caregivers or authorities, and not because, actually let’s work towards their own goals.

The Yellow Ladybugs conference last year focussed on the mental health of autistic girls, with plenty of sage advice from autistic women who were once confused little girls like me, trying to understand and fit in with the world around there. That conference showed me that autistic women could be psychologists and teachers and speech pathologists, but it took a lot of self-awareness and self-advocacy in a professional sphere that very much has an us and them feel at times.

I worked at a specialist autism school at one stage in my life. I think if I had the understanding of myself that I do now, I would have been able to cope better (bloody hell schools are over stimulating nightmares at times, let alone the social demands!) and would have been a better speechie, better at my job is all aspects. Unfortunately at that time in my life I was not doing very well at all mentally, it’s around the time I got my BPD diagnosis and had my first hospitalisations around self-harm. So yeah, If I could have my time again? I don’t actually know how I’d handle it…

But I’m working through my journey. DBT is going well, I AM feeling more skillfull, I can handle more of the things the world throws at me, even though I’m really only just emerging into a living with covid world where I have to interact with people in person and somehow backup and do it all again. My spoon levels fluctuate wildly, and I have to attend to my downtime, so I can be present when I’m wanting to. We’re doing the interpersonal effective model, and god doesn’t it feel like a social skills training for autism, eye contact recommendations and all. I’m a bit skeptical of parts, but I give everything a go, and apply what works for me. I hope the others in my group can too.

So this Autism Acceptance month, I’m learning more about myself through all of your experiences, so please, share your stories, I’m thankful. I wish they were so painful at times, I’m here with big hugs and virtual stuffies and weighted blankets for time out when you need x

Back to face to face therapy – also don’t scare me like that Centrelink!

I did it! Made it into town, did my first face to face psych session in 6 months, first time I’d seen this therapist in person since the assessment 18 months ago, and yeah, did it.

Verrrrrrry zonked this afternoon, but let’s see what I remember of the day and I get going.

Didn’t sleep great, that’s a little expected, got up after waking a few times a bit after 700 and made coffees. Sipped on that, did the breakfast and meds thing. Now I’m wondering whether it was today I made Bruce toast with his second coffee? I think so, the bread was soft. Unless that was last night? Blur I tells ya, there wouldn’t have been coffee though last night, so I think it was this morning.

Drove to the station, walked down the stairs as the earlier train pulled in, so hopped on that.

Two stations in it clicked that I was meant to have a mask on. Whoops.

Made it to Newcastle interchange. Most of the toilets were closed off, but I didn’t actually need to go and the tram was there so I caught it to Crown street to walk through the mall and see how it was going.

Took some pictures of the changes, like to the old David jones building. Bought some cards.

Sat outside the post office, wrote in a card for my old OT whos report I think got me over the line for DSP. Then walked up the hill to the hospital.

Reloaded my vaccination certificate and the service NSW app. My third vax still isn’t on Medicare, I guess I should ask the chemist about that…

Went in, mask on. Receptionist – I said hi and said who I was, she wounded familiar from the phone. Some of the mental health receptionists have the best manner. Very mum-like but businessy enough. Some suck. This one rules. She makes me feel like my calls aren’t annoying . Always good for those of us with rejection issues.

Oh speaking of rejection issues, starting to feel a little like I have to come up with more problems so that my therapist doesn’t think I’m doing too well and says I don’t need to continue with the service. I mean it’s nice not to be crazy erratic, but I do have things to work on and I’m just getting into this doing things again.

So into the session. OMG so sweaty. Glasses fogging up. Had the window and outside door (to the balcony, old hospital all that) open for covid airflow reasons. but I’m this hot mess of SWEAT.

At one point he asked how I was inside, and honestly I wasn’t a mess inside, it was all outside for once. Still masking to high heaven. Wonder if that’s easier with actual masks or not. Time will tell. I don’t really try too hard with my short appointments at the Mater to get my antabuse, they see me as I come that day for that few minutes. And keeping coherent for 5 minutes is easy. But a 50 minute psyc session? Yeah I can do it on the computer. Easy. But I don’t want to. I want to drop the mask and therapy properly. I guess raising masking vs opposite action will be something I bring to the agenda next week. I need to bring more stuff so why not that? Also works into my working up to raising whether I’m autistic. As will telling him about the yellow ladybugs autism and adhd conference in June.

I know I should do it, at least actually get a professional’s input. Especially while have this access. But I’m scared he’ll think I’m so off target or I’m making stuff up or something. I don’t know. I still have to build that trust I guess.

He brought up the reminder that we were going to talk more about work options, I asked if I told him about my DSP approval, he said I hadn’t but he was glad I got it even though his report wasn’t helpful because he’s so set on DBT being amazing and me being a good candidate for change.

Which brings me to Centrelink and them calling me to upset me on the train on the way home.

As I wrote on FB to my sister

I have to provide bruce’s profit and loss statements, but they called me to tell me on the phone on the train on the way home today and it was a shock and I cried and didn’t get all the info and she said to call them back later if I wanted to check, but yeah. I got an answer on twitter though and theree’s a letting in the mail I can wait for

So yeah, have to do his income side of things. When the lady said why she was calling she said she was assessing my DSP claim,, and I was very shocked and very much thinking it was god to go. It took a few times to explain to me it was to approve me eligibility on the income side – ie whether Bruce should be my keeper because partner income and asset test crap. The phone dropped out in the Cardiff tunnel too which didn’t help. And THEN she said to just call back and she’d made a note on the file of what forms to complete and they could tell me again, and so i did after lunch and I wasn’t able to verify my identity with my voice and they weren’t understanding my responses and maybe I wasn’t that coherent by then? but I asked for operator then was told they were busy and to do it online and they hung up.

Thankfully I got an answer to my cries on Twitter. God I love the social media teams on there.

So I’m more than done.

I played Animal crossing and wore my Hello Kitty hat and shoes that came with teh Amiibo cards Yieki gave me. And I made pasta for dinner.

And I’m sooooooo tired.

Aaaaaand I’m done

You know when you know you’re over-doing it and you know the end is close but there’s “just one more thing” to attend to and you need to do it NOW otherwise once you sit down, it won’t happen?

Yeah, that.

I flagged it with my psychologist on Monday that I knew I was getting busier and I needed to keep up my resting and other good habits in order to maintain the good track I’ve been on. I mean, it’s great, I went out and socialised for the first time in FOREVER at the Newcastle Greens federal campaign launch. A good few hours socialising, meeting new people, networking. Oh and all sober. Got a diet coke when I go there and ran off nervous energy the rest of the night. I was brain dead by the time I got home, unable to answer questions without a delay. Lol. Those spoons were long gone.

In other good news, I’m so close to having my Disability Support Pension approved after asking for the review when it was rejected last year. an Yvette from Centrelink called while I had covid to let me know that looking over it she wasn’t sure why I couldn’t have been marked as fully diagnosed and stabilised on what she was reading and sent it to be more thoroughly reviewed. I’m told they got in touch with my case worker at the substance use service and also the Occupational Therapist I started DBT with while I was on the waitlist for the public program and have come to the conclusion that I do meet the criteria for treated and diagnosed and then also that I meet the 20 points necessary on the impairment tables which freaks me out a little when I read it but year, I need to admit that I need a lot of support and structure to do more than the bare minimum, whatever you think that is.

So the next step is a telehealth appointment with an external psychologist to confirm I meet the criteria, which will be next Friday at midday. So I’m nervous about that, and worried about presenting well but not TOO well, if you know what I mean! Need to not mask, be honest and open.

How’s everyone going in the weather? It’s just one added thing to my mental load, even though it’s not REALLY affecting me, it stops me from doing the washing, or taking the dog for a walk if I could even motivate myself to do that. I watch the creek, assuming it won’t get much higher. I make sure I have food and medicine and have my phone charged in case. Water bottle filled. Little things that will make a difference if that storm cell does hit. Bruce is working today, for the first time this week, the weather being awful doesn’t make boat detailing an easy doable job. Oh and Maxi needed the vet yesterday another thing on my mental load – I’d finished a telehealth group, there were three new patients, so there was nine of us in total, it was full on, hard mental work even without trying to do therapy. Then i had to adult and take the dog to the vet. That’s why I splurged on chocolate at the service station on the way home and self soothed with m&ms :p

One thing I’ve also come to realise, and to accept and embrace, is that I rely on the meal prep boxes we get each week in order to be able to have the mental capacity to make dinner each night. Having the meals planned and the instructions there means my weary brain can pick up the recipe each night and follow the steps and come up with something nice, something different, something I’m proud to present as dinner for me and my partner. the nights I’ve been too zonked after taking on extra stuff without allowing for the energy, or when I’ve been sick since the Covid hangover is still niggling with a night cough and occasional headache and I can’t bring myself to cook, there’s only so many times I feel okay about Bruce getting us pizza, or us getting whatever is on special on the Maccas app. Though we DID have a lovely “date night” walking up to the local Maccas for cheap meals :p

So, it’s the weekend. My plans for this afternoon are dishes, dinner and relax. Might fire up the Sims or go fruit picking in Animal Crossing. But nothing too braining. My brain is done.

The year begins proper

https://youtu.be/SZNsvUT0DQQ

January is just a warm up for the rest of the year. People and the services they provide are still off on leave at the start, the come back in over time about a week in, taking days off to share child care for the long summer holidays, and more and more working from home due to covid precautions and generally increasing flexibility for the office worker after two years of realising a lot of things and the busywork of offices really isn’t essential.

I remember working over the summer holidays as a school-age speech pathologist. Planning and photocopying for the year ahead, booking up term one with appointments and workshops and meetings and training days. Seeing the older kids, the high schoolers, the ones that don’t do well being pulled out of school or class for appointments, finalising formal language assessments and reports for the next round of funding.

This month, January 2022, has had some planning for me. Goal setting, remembering where everything was working up to before Xmas and this new Covid rush.

So what are my plans for early 2022, now that I’ve taken most of January to re-establish a routine (yes, down to plotting it out on my calendar) and catch up with my therapists and co-conspirators?

Well, I’ve booked in for Japanese night classes for May and June thanks to a semi-anonymous benefactor named Eric who, after me posting about it on Twitter, sent the $310 needed to my PayPal bright and early one Monday morning, making my day, making my week and month! I was seriously buzzing after that, and it really helped me to focus on getting my other plans in place for this six months in order to get the most out of Eric’s gift. I’d already signed up for a trial of Duolingo as suggested by my psych, which is going along well, my hiragana and katakana is still functional but you should see me make the stupidest mistakes on there. The little broken hearts for mistakes do me in! I need to decide now whether to continue with a paid account so I can “clear” and practice my mistakes (and of course use any other feature on there) or just suck it up or you know, just get it right the first time!

I’ll need to start practicing speaking a writing too, speaking I can apparently do on there since I have a mic, but I’ll have to push myself to do writing, particularly so I can actually recognise and use the more complex kanji. I might get a workbook, or printable worksheets. Not sure yet.

Next up, I’m going to be taking part in a series of focus groups for Ausgrid over the next few months. I get paid $1000 at the end which is pretty sweet, so I’ve popped them into my diary and hope we do get to do some of the sessions down in Sydney as planned, cos I quite like a day out down there on the train and a catered lunch :p

Third thing for the coming months is the Federal Election and being involved in the local Greens campaigns how I can. I might be getting involved in the social media role and the advertising stuff. There’s training tomorrow which will give me more skills and information and also includes anti-bulling and “don’t get sued for defo by Dutton” training, so I’ll figure out if I’m up for the role after that! The election could be up to May 24th, and that time will fly once it’s called.

Fourth, but of course the most important, is continuing with my therapy and other appointments and homework. I might need to see if we can change my individual therapy session so I’m available for more or of the lunchtime campaign meetings, but my psych has already said that would be quite alright given it’s a part of working towards my goals. The group sessions are still 2.5 hours on Thursday afternoons. I really hope they go back to face to face in a month or so when we’re maybe past the worst of Omicron, but no one has any timelines, and we were just about to go back to f2f after Xmas, but then the surge hit and threw all that into disarray. The telehealth format isn’t ideal and I feel like brings up more communication problems. I really hope we’re in f2f by the time we’re doing the interpersonal effectiveness module at least!

We’re doing the Emotion Regulation module of the DBT program at the moment, and I’m struggling a little with whether my pushing through is actually opposite action and thus good, or I’m just sucking it up and masking even more and that’s working against me. I’ve more or less concluded that I’m probably autistic, and people I know and respect agree with my reasoning, so I’m trying to respect that part of me, and incorporate the strategies from DBT for borderline personality disorder into my life while learning more about how I inherently function and building on my sensory toolkit and being compassionate to myself and the little girl that struggled for so long.

I’m also still taking Antabuse tablets daily to assist me in staying sober so I can do all the things. At the moment that involves fortnightly visits to the Mater to get the medications and touch base individually, and fortnightly group sessions online using Teams. The group was only two patients, a nurse and the psychiatrist today, and I’m starting to dread the smaller groups to an extent and hope it’s much bigger next fortnight! Group for DBT last week at one point was me, two psychologists and a psych student, so it was a bit intense. At least they run it like we’re all participants when it’s like that otherwise I’d surely run away!

As far as working goes, I have my mutual obligations exemption til the end of June, so I’ll be working on my goals towards being more articulate and able to participate through my therapy, election work and Japanese classes, and look to pick up with a disability employment service in July. I don’t really know what I want to be doing work wise, I have ideas, but we’ll see. My partner is still running his business, and I’m helping out with that by being available, putting out the washing and feeding him. I still claim to be in Facebook social media manager, though there’s not much going on over there at the moment!

I think that’s plenty for me to be committing to for now!

Bring on the election!

Pre-existing conditions, let us count the ways our deaths would be ‘splained away

How good are distractions like the child forklift drivers or the tennis, or Sam Kerr? How good is it not to have to think about the ways the government is happy to put us in danger to maintain their relationships with their donors (how IS Gerry Harvey anyway?) or their so-called principles. I say so-called, because they WILL change on a donors whim (oh who’s laughing now about Djokovic? Certainly not Rio Tinto!)

We sit here looking on in wonder, while Daddy Domicron tells us he’ll have a plan for back to school in the coming days, Labor refuses to call for a suspension on Mutual Obligations (except a lone voice from the ACT, don’t tell me having the Greens sharing the power doesn’t help Labor fulfil their progressive promise!), and I wonder if it’s worth asking my chemist to send me the RATs I get under a concession card out with my Webster Pak’ed mads, even though technically I’m supposed to go in in person to collect them, wouldn’t want us welfare recipients getting something without jumping through unnecessarily dangerous hoops!

Back to those pre-existing conditions, though. The ones that get listed alongside the ages of the dead and whether they’ve had first, second, third or more vaccinations, in order to make the voters feel safe to go about their day, to keep the economy ticking along, because she’s the most important creature in the room and we must be willing to pay tribute to her.

Personally, if I die of Covid, they’ll take one look at my weight and that’ll be the first things listed, more important than my young age (39) or the fact that I’m 2x AZ vaccinated, and can’t get a booster til the 10th Feb, though that will also play a role in their one-sentence obituary. Surely, my mental health will get a line. “Severe mental illness” is not a well-defined term, but data from the last two years is repeatedly showing that people with mental illnesses that have led to hospitalisation are much more susceptible to Covid, even when other factors like a higher smoking rate and socio economics are taken into account. Just be thankful you don’t have schizophrenia and thus be at higher risk of infection at home or in the hospital, but also readily triaged as a lower priority for high level care if I do many to access it.

Doctors and ethicists consider the role of triage and the roll of the Do Not Resuscitate order in a health system in crisis here and abroad (Fury at ‘do not resuscitate’ notices given to Covid patients with learning disabilities), while I see friends on Twitter getting their affairs in order as Omicron circles around them, worried that their disability will not be the thing that led them to getting covid, but the detail that means they are second in line for the ICU bed.

Myself? I’m doing all I can to stay Covid-free. I do my groceries at the quiet times, I see my therapists on Telehealth, I count down the days til my booster is available. I live in my small little world, coddling my mental health, knowing that an admission due to suicidal behaviours would be more dangerous than just letting my attempts to push myself to having a more interesting and varied life sit back for another few months while the world sorts itself out and we hopefully don’t create yet another variant just as I’m wanting to step out to play.

So, for those of you reassured that only those with pre-existing conditions are dying, take a moment to think about why they have been allowed to catch Covid in the first place, and why, in a highly stressed system, their ambulance might be ramped longer or they’ve been prioritised lower for a call from healthcare in the home.