Smol World

Psychologists like to describe my world as becoming very small over the years, to the smallness it is now, where I go out for grocery shopping at the Friday I go to the hospital to pickup my Antabuse, pausing to only see family occasionally, and less and less with Covid conditions kicking in.

I feel small, sitting in my telehealth appointment bringing up how I’m overwhelmed by small things, seemingly small things, like planning and cooking dinner, doing the dishes and clothes washing. I reminded again that “should” isn’t really helping me here. I should be able to manage these things with ease, not feel overwhelmed with the tiniest thing in my routine. Should I be able to expand my world to include going out and about, socialising, working, studying, being the outgoing girl I have been? I’d like to do more, grow my small little world. But it’s scary and I feel small, shrinking away, and useless, so much useless.

I remembered why I felt sad over the weekend, remembering not living up to people’s expectations as a person, as a speech pathologist, as a disability support worker. Not living up to the me on paper, not being able to live up to what I’d set up for myself.

Managers “suggesting” things like eating lunch in the lunch room and being more of the team when I really and truly would not be able to function for the second half of the work day if I forced myself to do lunch rather than going out for a walk on my own. I didn’t do that in the workplace I felt most comfortable in, why would I be able to do that in the one where me and my world were falling apart around me?

Back in uni, in my first speech pathology placement in second year at the local Community Health Centre, I’d scurry up the hallway in the mornings without stopping for the customary good mornings and how are yous. My anxiety just squashing any part that thought that would be of benefit to me or others. That this routine was expected that I needed to take part in it.

I just want to feel on top of my little life, and then I want to branch out. I’m going to branch out – I plan to go to the Greens meeting next week, I have enrolled in a Japanese class thanks to the generosity of Twitter fam. I’ll see my sister and the kids on Friday while I’m out for my Friday stuff, getting an OzHarvest bag I hope, if they even have any given how sparse the supermarkets have been, will there be hand-me-downs available for us?

I have a lot of bad dreams, about school and uni and work. Always never fitting in, always out of place and struggling to fit in. I have so many memories about trying to do the right thing and just not getting it right. Who knew the rules were so simple and yet I could manage to get them wrong?

I’m pleased to have my Twitter family. My smol world is much bigger with you. x

Tempting Madness

I only really needed to do one adulting thing today – take the car for a rego check – but it seems I let the weight and distraction of the world build up on me, over the day, and let it all hit me shortly before I needed to go.

Spoiler alert- I did get the rego check done, it was passed with no issue! Yay!

I don’t know how it started. last night I went to bed with an overdrawn bank account because the bills came out and I’m a silly little girl who, when she got her JobSeeker payment 5 days early with the public holidays over Christmas KNEW she was likely to mis-assess her spending in this time and would come up short a little early this extended fortnight. And I tried, I really did, but one day off on the bills. Silly little girl. So that started it I guess.

Bad dreams overnight? I think so, keep having highschool and university people and places and events. Keep having difficulties at them. No, I DON’T want to relive any of that tyvm.

Got up, had coffee, and breakfast and meds and made small plans for the day – washing and washing up and getting the rego done. Also take the dog to do the recycling so he gets a run and I get the diet coke cans out of my car before the rego check. And Have $10 extra to put back into my bank account. (I hate hate overdraw fees! I’m already broke when you charging me $15 more RIGHT NOW??)

So, took the dog out, he had his run and his poop. It rained a little. Did the recycling. Didn’t really have to interact with anyone. Nice.

Came home, did dishes and stuff. I don’t know what happened here. Oh yeah, Bruce got home to have lunch and was talking to me about an injured bird and going out on a boat with his boss and the waves and he brought in a parcel for me (omg A chewy necklace from my wishlist

which I honestly hope someone else purchased for me because it’s not on record of my amazon purchases and I can’t remember ordering it but I think I have a memory of thinking about ordering uit, and this is why I don’t have a credit card anymore because I honestly impulse buy and don’t remember and it’s totally a BPD related thing) and I was focussed on that and figuring it out and not listening and got all a flustered when I realised I hadn’t been taking it in but making all the right noises and I’d lost 10 minutes.

Then Bruce checked the lights in the car and had to change 2 bulbs and went to get them from Repco 5 minutes before I was meant to be up at UltraTune for the inspection, but that was okay too and it worked out.

But then WHY did I go into Coles while I was waiting? THAT was a silly choice, I didn’t even want to buy anything, and yeah

So It’s taken the rest of the afternoon to wind down, with chewing things and frozen poppers and sensory tools and Animal Crossing and I made dinner and I think I’m almost human again but I’ve lost time. And sanity and I know this is the first real day I’ve had like this, and some of it was Covid stressors, like the two deaths in Lake Macquarie overnight. Two more since the two from the aged care. And that got to me. And sent me slightly spiralling, and then it got worse from there.

I know it’s unlikely that if and when I get covid it

ll be bad for me personally, but what if it’s not? So glad the family had Omicron over Xmas, not glad they were sick but hooping that means they won’t get worse ones down the track. My sister is exhausted from it still. But she never gets to rest. The Pope says I’m selfish for not having kids. I don’t think I could do what my sister does. I’d have gone off the deep end further and sooner and repeatedly.

I’m scared to tempt fate though. Relieved I never had kids but sad about it nonetheless.

Add me on AC? Friend code SW-0541-2956-7407

2022?

been musing a little depressively over on twitter about how 2022 was supposed to the be year I got to go out and do things and expand my life and all that and now with Omicron it all seems a bit too hard and crap and like opportunities are already slipping out of my fingers.

There’s threads asking about how your health care has been impacted by covid if you have a chronic illness or are disabled. My thoughts on that were around how it feels like pushing myself outside of my little mental health safe zone while the supports to catch me if I stumble or hit crisis mode seems like the wrong thing to do. Selfish and dangerous. One of the things I was going to do this year was see if moderate “social” drinking and I could have a thing again, now that I’ve been building up skills to apply from therapy to use instead of alcohol as a coping / unravelling mechanism. I’d really love to spend my 40th birthday doing wine tasting with my partner and have that day be a happy memory and not a regret or the start of something horrible. I also know that I may not be able to just socially drink, but I want to try it again armed with skills and self-awareness and strategies and supports. yes, it’s a little selfish, but pretty much any goals of mine involve me trying things that are outside my comfort zone, and I don’t wanna rule anything out. You may see me posting about how that all went horribly wrong later this year, but you might not. I wanna try new things, or old things with new ways.

I was lamenting that my therapy might not be as effective as its so far all been via telehealth. Microsoft teams meetings with my therapist, my DBT group, my Antabuse group. I joked in a group late last year that I was really looking forward to going back to face to face groups because my social skills had deteriorated over Covid. Not a joke. I’m out of practice and the anxiety around things I used to do is immense. I can still go about and do things, I’m just incredible fatigued afterwards. Spoon budgeting is critical, but I also wanna work on it. And if I’m going to do a whole module on “interpersonal effectiveness” it’d be good to have people other than my partner and dog to practice on.

My plan to expand my little world by participating in things that interest me. Picking back up a Japanese class may now be reduced back to doing kanji in a workbook from Amazon. The federal election should be a chance to keep involved in Greens events and the like, but I again want things to be back IRL. It’s harder but gooder for me on a personal level.

At the start of December, before the Argyle nightclub became a superspreader event, there was talk from my doctors and therapists that therapy and groups would go back to in-person. This held a lot of promise for me – The DBT sessions would be right in Newcastle, and I could top up my Opal card and catch the train, and buy a coffee, and look at the beach and all the lovely things that come from being forced to leave the house. The mater sessions going back to weekly groups would also increase my social interactions, and I miss the routine of getting the OzHarvest bags from the local charity and loaves of bread to split with my sister, a reason to visit her more often. I was going to go back to “Cupcake Thursday” but perhaps on a Monday, where I’d go to my parents after school and catch up with the niblings. One is starting HS this year, the second youngest into Kinder. It was in my plans and goals, but it’s hard to time and to do when school is on and off, or you’re wary of getting your loved ones sick, or it’s actually against the rules. But the family all had Xmas covid, so it’s not up to me to infect them any more at least.

So, yeah, 2022 is up in the air. Yay :/ I wanted to have more hope that this.

Applying, and being rejected for, the Disability Support Pension

So, you’ve been playing along right? I’ve been on JobSeeker since the start of the pandemic, working through some of it, getting some JobKeeper as well, before I lost my job as a disability support worker in July due to mental illness and substance use issues that interfered with my ability to care for others, let alone myself, safely. I have Borderline Personality Disorder.

I’ve had exemptions from looking for work most of the time I’ve been on JobSeeker and Newstart over the years, temporary reprieves from applying for a job a day, and being rejected for most, while also attending meetings with JobActive or Disability Employment Service (DES) providers, and anything else they send you to. I had a DES provider 6 years ago that helped me build my confidence and reference base with volunteer work with a special school, using my speech pathology skills and “passion for inclusive education” whatever that means in a segregated education setting… Anyways.

I got an exemption from job search straight after I lost the DSW job, a medical certificate and the the Job Capacity assessment giving me an exemption til March THIS year. it was possibly going to be extended but things happened, I drank over Christmas and summer and ended up in hospital with a Seroquel overdose attempt in February. I asked the hospital staff at that time if they though DSP or NDIS was worth applying for, and they flat out said no, they have severely ill people, way worse and psychotic than me, and they struggle to get them any disability support. So I took the medical certificate THEY gave me, and that covered me til after Easter, when I started engaging with the Salvos DES provider locally.

Sarah’s lovely. She’s based out of the Central Coast, only coming up to Toronto fortnightly, so I saw her then, or by phone. With a pause with Covid again of course. When things started to look like I needed to do job search again, I got another exemption. I’d been seeing a private therapist for a year now doing DBT skills, and she’d gotten me onto the waitlist for the Centre for Psychotherapy again, to do the full DBT course this time, as when I’d been with them 6 years before I did individual conversational model therapy, which was okay, and I ended up getting a job and a boyfriend and all that, but it was so very hard and had obviously worn off since! Front that exemption, because it was determined that they couldn’t actually give me a temporary exemption because my condition was permanent, and they got me to do a Job Capacity Assessment with one of their psychologists by phone. She said I certainly shouldn’t be working at the moment, particularly since I’d be starting intensive DBT soon, which involves a weekly hour individual session, a weekly 2.5 hour skills group and homework. Jody, I think her name was. She then went on to say that they best thing would to be to apply for the DSP, and that I should get in, since she figured all the years of therapy I had done before would count for the treated and stabilised criteria and that I hadn’t been working for a year already and would unlikely be working for another one. She I did. I put in the online application that day through MyGov. I then set about getting the letters and reports they wanted – discharge summaries from hospital, referral letters, letters from the psychiatrists at MH&SUS (Mental Health and Substance Use Service) where I’d been involved in their programs for over two years, a MASS of paperwork from my GP, since they don’t just get to fill out a form any more.

(on a side note, my GP told me on our phone appointment on Monday that he’s moving to Melbourne! I shed tears, been seeing him for 6 years. I’ll move to another doctor in the practice, but got it’s hard when you’ve found a good one to let them go!)

So, I get the required paperwork in on time by their due date. Then, I wait to come up for another capacity assessment. Meanwhile, I come off the waitlist at the centre for psychotherapy and start with the psychologists there. I get a date for the Job Capacity Assessment, it’s a Friday and then they change it to the next one. They advise me to get a letter from my new psychologist to add to their evidence. I make that phone call. THAT was awkward. He writes me one outlining what the treatment entails but tells me he couldn’t write a letter than supported the application as he believed that the therapy would have the intended effect and I would be way more capable of working or studying by the end of it. I also get a letter from my case manager at MH&SUS outlining my care and participation there. Cool.

The day of the phone assessment. 9am Friday November 5th. I take the call in my backyard, overlooking the creek. The assessor seems knowledgeable about substance use disorders and BPD. She’s less confident about my previous therapy counting as fully stabilised and treated as that was 5 years ago, and I’ve just started more therapy. The call drops out several times – could have been my phone reception or hers, she’s calling from up the coast somewhere as she refers to Newcastle as “down there”. I do the describe your worst day, what sets off my emotional overreactions, what causes me to self harm, what gets me suicidal and hopeless. Fun times.

I confirm that I can do the basics. I can shower, dress, cook, shop. I’m doing therapy. I’m literate. I’m intelligent. I have a partner that helps me, but I do a lot independently. Hell I’m doing this phone call alone because talking about this stuff is terrible, but I’d rather not do it in front of family, and friends isn’t really something I have, and I am honestly my best advocate. I’m capable of much, but everything I do do means one other thing gets left undone, or if I have a bad sleep, or someone looks at me the wrong way or I have an argument with a loved one, I crumble quite easily still. Hopefully this therapy will help with all that. We’re starting Emotional Regulation in the new year, have just done my first trip through Distress Tolerance. So I’m learning and applying more skills already, and I’m glad I have that for Xmas this year. But it’s a long road ahead.

The assessor (he name is Jo too? Maybe?) tells me she will be calling my psychologist and case manager and maybe my GP for more information. I’m nervous about this. My case manager says she got the call, and they spoke about how anxious I am, and how I’m doing well at the moment, but I need to stay working hard to stay sober, and I’m doing all I can with the weekly contact with her and daily Antabuse tablets.

She calls my new psychologist. We’ve been working together for nearly two months now. We met in person last year at my assessment, but we haven’t seen each other in person since starting therapy. We’ve set goals, talked about study, work, travel, politics, friends. He’s extremely optimistic about my future and keeps telling me how well I’m doing and that I’m grasping everything so fast since I’m smart and I’ve also got private therapy to kick start me before coming to him. He tells the assessor the same thing. Actually, he ignores her messages a couple of times because he knows that his evidence will all but certainly doom me to be classed as treatable and in treatment and so not “fully treated and stabilised”. Yeah. Can’t get anything past time.

Personally, this is putting a LOT of expectation on me, and sometimes I do well with a bit of expectation, but often I crumble. it’s completely a BPD thing, everything seems peachy and then the chaos demon comes out to play. That’s why the crisis survival skills are about literally surviving, not dying, and not making things worse in some way while in a heightened distressed emotional state. If you can ride it out, bide time, not make things worse then you’ve actually made things better, since you can go back to your regular programming and continue your life without having lost your licence or cut yourself, or enraged a loved one, or thrown yet another phone in anger.

Now we wait. The assessor has all the information. She’s state she will recommend a LONG exemption from mutual obligations while I’m undertaking DBT as it is such a commitment of time and mental energy and being able to completely focus on that, and work at my own pace towards any work or study goals with my therapy team will be more effective than having a DES provider hovering over my shoulder asking me to tick more boxes.

I get some information trickling through, pointing me to a rejection of my DSP application. The first is getting an appointment for my DES provider to call me on the 8th of December (my application is due for a judgement by the 5th). The next is the letter telling me I have been assessed as having reduced capacity. I also get a statement outlining my JobSeeker payment amount from December 16. Getting the hint here guys, just send the official rejection through already!

I’m checking my app several times an hour over the coming week. I try to apply some of the therapy skills to the situation, trying to accept that I need to wait for them to make or publish the decision, that they technically said the “estimated” completion date was Dec 6, that I’m not able to change anything by anxiously and obsessively checking for an update.

Close of business Friday Dec 3. No updates. I also check on MyGov. Nothing there either. I guess I wait til Monday?

No…

6pm, Sunday December 5, I get a text through

Oh shit, better check it hey? I call on Twitter and my partner for moral support.

Computer says NO.

Am I surprised? No. Disappointed? Yes.

I was never going to get 20 points in a single category on the Impairment Tables as reviewed by the Gillard government in 2011. These tables are used to rank capacity of a person to take care of themselves and have little to do with work. By asking whether I can feed and dress myself, or shop independently, you’re not actually assessing my ability to obtain and keep employment, no matter now you twist it. They might actually be more appropriate for NDIS access, but assessment for that is a whole other kettle of fish designed to weed people out who need support but can’t argue their case.

I was hoping to get offered DSP on the basis of being unable to work for two years, along with them taking into account that I’ve done millions of therapy over the years and to reach a point where you could actually call someone with BPD fully treated and stabilised is such a vague notion and that’s exactly what they rely on. I KNOW I’ll be doing psychological therapies on and off for life. Hopefully I get breaks where I can be a bit more independent, but I fully expect to have mental health care plans every year because those ten subsidised sessions are a bare minimum for maintaining my mental health, because a session a month to ensure I’m on track and to have a professional to guide me through life is probably less than needed when you put it like that.

So, where to from here?

Well I’ll still be getting JobSeeker. I have a partner who is doing the NEIS program (edit Sat 11/12 just found out his payments for that ended last month, so no guaranteed income from that allowance anymore) and starting his own business car and boat detailing, but that’s still in its early days, so I get the couple rate of JobSeeker, $50 less than singles, and between us I only get rent assistance, because of whatever box it was and so I get the maximum rate, but that’s still minimal. We’re luckier than most, I have family support to pay the rent too, so we’re not going to be booted out, family agree that it’s better for all of us if they help me pay rent rather than ending up with my living in the back shed again, cos that’s not great for anyone.

So, I get JobSeeker payment. And I have an exemption from mutual obligations until June 15 2022, which we all know will be here before we know it! The DES provider will call every couple of months to confirm that I’m still attending therapy and am still alive.

But I don’t know if I’ll appeal, the only grounds I could possibly push on is that between losing my job and being able to recommence job search is going to be at least two years, and not guaranteed that I’ll be ready then? I WANT to work, I’ve been well conditioned to want to be a functioning member of society even when I fail at adulting over and over. I want to use my brains for the good of the world, whether that’s utilising my speech pathology degree and masters in inclusive education, or training further, or getting involved more in politics or lobbying, but I need to get mentally well first. I need to be able to take on more than the basic activities of daily living without returning to wiping myself on alcohol (more than 9 months sober atm) or sabotaging my relationships. I think DBT will help me with that, but I need the time and money to be able to focus on getting the most out of it. And I think DSP would have provided that and set me up better to work part time after therapy is done, but I’ll muddle through, as we all do.

Rejected

So my DSP claim was officially rejected last night. Message came through at 6pm on a Sunday to go and check in the app, and yep, REJECTED.

Like I said on Twitter, it’s good that they sent me the message on a weekend outside business hours, because who’d want to easily be able to access emotional support at this time? Good thing I was home with my pupper and partner, and had the ear of Twitter to rant to and blast my Kflay at

So, now I’m waiting for the letter that will tell me their reasoning. I mean it’s likely because my psychologist has hope for me that the next twelve months of therapy will do me so much good that I’ll be a functioning participant in the Centrelink process mid 2022. not my goal.

My goal is to go to Japan. If that means participating in the Centrelink process and gaining employment, then sure, I’ll do what my mental health allows me to do. But maybe I won’t be the model patient you’re hoping me to be mr psych.

(for the DBT crew, that’s pretty wilful sounding of me me, hey? Don’t worry, I’m in it to give my all because I deserve happiness)