TW: The 'real' me inside - I come with an SI warning

Afternoon @AlwaysMyself 😊, how’s your day been?

Thanks for the reminder, much appreciated! I also absolutely know how me not sharing could also get really boring so sorry in advance. Tbh, not really use to sharing really. Also just got to get out of this trapped feeling in many areas of my life at the moment. I am well aware I have built stumbling blocks that also cause this feeling so you know good when you feel it from both sides.

Anyway all good here, nothing new for me 😊

@AlwaysMyself teehee 😋 Could make a game out of it... see how few steps it takes to get between two seemingly unrelated topics!!

Hmm interesting!! I think the environmental issues one would be the one I could easily get very... vocal about 😅 But then, it's not a lecture, is it!!

Do you have any plan or support for the possibility of getting hit with an emotional trigger? Perhaps another thing that's worth flagging with your teacher-person. Also perhaps... an opportunity to step outside the comfort zone of withdrawing, by talking a bit about how those things do impact you? I guess depends on how emotionally safe the space feels for you to be vulnerable with the other group members, which can depend entirely on the energy of the room (and being an assessment context is also a factor hey!).

Glad to hear that you've got a potential pathway re: ASD diagnosis. I hope it's not a case where there's too many barriers, like steps to take or financial cost. Keep us posted if you like! 💜

@Jynx I sent an email today to the course contact/facilitator with some feedback around challenges with the first task due to autistic-like communication traits (and an offer to discuss ways it could be made less challenging for neurodiverse if they would like to), and noted my thoughts/concerns on the upcoming task too.

I really don’t think there is a way around it with regard to if it lands on a discussion that is very difficult for me emotionally. I can’t withdraw from engagement in an assessment. On the upside though? Hopefully I may never meet the students or teachers socially, so I can “say what I think” (including being direct if I disagree) without having to be concerned about offending them (because I know I am polite and not attacking people, so that isn’t a problem to worry about “crossing a line” into aggressive/abusive language).

The autism assessment will cost me a significant amount. However, the ‘benefit’ of suicidality is the awareness that my money isn’t going to serve me if I’m dead! If the assessment helps as evidence for obtain either a DSP or NDIS, then in the longrun the money will “pay off” in future financial assistance greater than the cost of the assessment. However, there is of course a risk that even with an assessment (whether diagnosed with autism, or a non-diagnosis but evidence of significant impact on living) I don’t get accepted for either DSP or NDIS, then the money is essentially “wasted”. But, if I’m dead, I wouldn’t be using it anyway, so since the GP believes there is a strong likelihood of diagnosis then it’s a worthwhile risk.

I don’t know what the wait time for an assessment will be yet (I have emailed though), but their website says appointments are available “within 3 months” currently. But from the first appointment to the report being provided, it outlines it takes likely over 10 weeks (which surprises me; I used to work for a place where they were done within 3-4 weeks of the appointment - provided all questionnaires were completed prior to the assessment appointment). So… maybe by August? 😕 (The GP will send me a second name also once she finds it out, so I can also see if their timeline would be any shorter.) My various work paid-leave I think will run out (i.e. no income except if I get centrelink jobseeker under sickness incapacity) around the end of May?

Good to see you online @Chasingsunsets .

Working night shifts lately? or just a night owl?

This has been a big ongoing barrier for me @Jynx struggle is real, you don’t want to even know how much my bills have been this month. It’s a very aggressive cycle, more bills, more work, less life, cancel some health appts as just can’t keep up, trying to find somewhere to safely live, it’s a real effort. Not one I am prepared to keep doing when you are constantly treading water.

well put @AlwaysMyself, I went for an assessment last year cost me an arm and a leg. Definitely understand costs and what youre up against my friend.

very keen on updates on your journey @AlwaysMyself if you want 😊 🙏

Haha playing night owl tonight and over the last couple hehe 😅, you traveling okay my friend ?

Not doing great currently @Chasingsunsets , but not deeply dysregulated either - if that makes sense? A calm despair.

I went down the hole of reading the NDIS page on what they will and won’t fund under their rules (generally). It has triggered a lot of depair/defeat feelings.

Hearing you on the cost of living & supports, and the work required to pay for it, and the trade-off with life-balance and wellbeing. 😖😭🤗. (They need to invent a sad-face hug emoji!)

Until the past 3 years I was unwilling to spend money on healthcare/supports that I needed longterm, because they would only “maintain” and not “improve” and thus be so expensive. 3 years ago my then-partner wasn’t coping with the housework burden from me not being able to do my share, so I started paying for a cleaner so that I didn’t feel guilty for putting it onto him and it would also try to lift the burden for him. I justified it by “because I have a cleaner, I can do paid work hours, and not need to reduce hours so I can cope with housework”. Then a year ago Christmas (because my physical pain levels were still really distressing for me) my mum bought me a few vouchers for remedial massage to try to encourage me to address the pain distress contributing to my SI. So I have continued with it since because it really did make daily life much easier to cope with. And I even made my own decision to see a chiro later in the year because I still had spinal pain even with the weekly massage, even though its also a weekly thing (previously twice-weekly; I notice the difference though, with weekly I get a return of pain before the next appointment).

During last year I was open to the idea of seeing a counsellor/pscyhologist again, but wasn’t willing to just “pick a name” from a website nor was I willing to pay $200-300 per week for “maintenace”. Finally I was given a word-of-mouth recommendation for a consellor that was cheaper (non-medicare however), so I started that mid-late last year also.

And now I’ve started seeing a MH GP where I’m paying $150-$200 out of pocket per appointment; plus I’m on a waitlist for a chronic-health-conditions-GP which will also cost the same out of pocket per appointment.

And in a few months I won’t have any income / centrelink-only. I am very fortunate that once my savings are drained my mum has offered to pay my expenses.

Hi @AlwaysMyself I have seen you very active on the forums my friend, good one 🙏

A calm despair, hey. I see the hole you went down, it’s definitely disheartening the rules. Sorry what you have read had triggered you. It’s similar to me and health insurance maybe, get very very little back sometimes I wonder if I actually get anything out of it really. Just rules that don’t make sense.
Like how are psychiatrists not listed on there, why isn’t there a cap that if psychologists cost so much you can claim psychology (not that it’s much of a rebate but it’s something) but at the end of the day health insurance is a business there to make money why the government protect them and make rules like can’t claim Medicare and health insurance. I get it like a small gap but big gaps I think there should be something in place. End of rant *

I been down a few rabbit holes lately however seemed to have settled, I feel a lot of alarms go off and no one seems to see them and then I am not sure if I have picked it up before them or if it’s my brain playing tricks. But this has been interesting to observe. ChatGPT was actually so good to consult 🤭😅

Yeah I’d have to say I had been similar, no way two years ago I’d be paying all this. I think I am caught in a web with the psychiatrist for sure, just for repeat scripts cost triple digits out of pocket, crazy. I did think I’d be discharged to a GP by now, just caught in the web is my feels. Don’t love health professionals really just don’t trust them for multiple reasons. Just got to get out of the web when I can.
however saying this I have had really really lovely health professionals. This poor psychiatrist is actually really nice I just feel like he's keeping me on his books for longer than necessary and it’s too expensive for me to justify, but then again I am stuck as that will mean no meds and I do think the ones I am on are helping other than the rest I have ever had as covered previously #keepingmealive, so what do you do.

I think a cleaner is a great idea, id love a cleaner for sure. Massages are really good are you still getting them? I was actually thinking of trigger point therapy and another one can’t remember, to try wake up muscles so I stand properly, I like a hard massage so hoping I’d be able to tolerate it but will have to revisit this when it’s a better situation. Read more etc but would be on my “ideal list”

that’s really awesome you got a good psych, how is the mental health GP going? When do you see her next?

That’s so great that your mum will help pay for all the expenses 🙏, so good! Definitely would relieve some of your pressure.

I know I take awhile typing so I think you may have probably gone to sleep by now, lovely chatting and sorry I take awhile typing 😜

I must have just missed getting your reply @Chasingsunsets lol. I had thought maybe you were too tired after reading/supporting it and needed to sleep and respond later 😅 (which would have been totally OK and reasonable). I closed off forum a bit before going to sleep and instead read DSP claim guide which is much more encouraging 😅. And I know DSP is still hard to get too! Where as i may tick all the boxes for NDIS eligibility but then possibly denied supports because they are ongoing needs and wont "improve my capacity, thus requiring less supports over time" -- they just maintain my ability and prevent decline/incapacity in other areas too. But i expect an experienced doctor/aid may know how to frame things to put it within the perspective needed for ndis to understand that it is essential even if functional capacity will not improve over time from where i am at currently. After all - isnt pne of the requirements to be "stabilised" and permanent??? I just don't see how it squares with someone having stabilised and permanent disability but somehow also has the capacity to improve independence over time with supports/training -- to me that is not congruent "all treatments exhausted" in proving disability permanance. And goal-setting being something needed for NDIS plans (but i know the LAC can do this with me, so i'm not "worried" about it) - but i suspect "maintain a lower stress, less exhausting life so that I don't constantly want to die" is not going to be deemed a suitable goal. I know, i know, its a matter of breaking that down e.g. not being physically exhausted - ergo cleaning supports. But the examples i see are all around improving independence or learning new behaviours over time in order to reduce support needs. And i've already done that to the highest possible level - i have as many functional skills as i can really, to the point i am burnt out from the effort of using them constantly without relief.

Sorry for the semi-rant. I also know the financial pressure on the system. It also really annoyed me reading the parts about what is deemed "provided through the health system" rather than NDIS -- even though the government does not proivde funding for those things (eg non-pbs medication related to the disability, or longterm mental health support other than unlimited psychiatry or GP rebates which cover less than half the fee charged). Providing funding for access to treatments not covered by the government public health system to support a permanent disability is not deemed suitable for "disability insurance", its just does not make sense. Like somehow a health disability is less valid or suitable for requiring adequate support in order to life a meaningful and accessible life. Its all one government that ultimately pays for ndis or medicare healthcare -- it would make so much for sense for them to "internally charge" between their internal budgets for the healthcare-related NDIS supports if they feel its better funded through the health system. Oh wait, of course they dont want to do that - because then they'd have to PAY for these health supports that arent fully covered under the health system. So yes, it is just a way for the government to avoid paying for healthcare for longterm medical disability.

I'm grateful that the ndis does exist. I'm pragmatic - some assitance to people is better than none. But some of these rules are ... so unfair when seen in the scheme of the whole integrated system and "passing the buck".

The one positive thing with a psychiatrist is that there is no limit on how many sessions you can claim. And once you reach the safety net threshold for medicare-rebatable services you then get most of the out of pocket expense back too. When i saw a pdoc weekly in the the past (over 10 years ago), i think it cost about $350 per 50min consult, and i think it was about $200 out of pocket each time. Back then the safety net threshold for me was about $2k i think (maybe $1.5k?) so it was mid-March each year when i would reach it. So for the rest of the calendar year I was only paying $20 out of pocket per visit because of the 80% gap fee rebate from medicare after reaching the safety net. Much more affordable! But seriously that first $2k was a big barrier! Especially during the year that i was on centrelink payments. I had to get a creditcard so that i could pay the service fee whilst waiting for my rebate to come 3 days later.

It does sound unusual that your pdoc is keep you on reguarly if the condition is otherwise treated/supported adequately by another provider (eg psychologist) and the medication is stabilised and able to be monitored and prescribed by the GP - and just refer back for consult/review if there are changes or concerns.

Having said that, when i used to work for a psychiatrist we did have a number of patients who would attend every 3 months for medication review/monitoring alongside the required blood-tests. I dont know why the patients were not discharged to a GP for this ongoing (or maybe they were usually?), but perhaps it was only the less stable ones that were kept on and/or the ones who had health/pension concession cards (because the doc actually bulkbilled people with health concession or pension cards!!) and so financial impact was not then a barrier.

I reckon it would be a reasonable question to raise with the pdoc if you wanted to. Let them know the cost is difficult and a GP would be more affordable. Ask them if there are any concerns/barriers for them in passing routine prescribing to the GP. And maybe even discuss whether a yearly review in the absense of any changes/concerns would be suitable? 🤔

Always your choice 😊 but i think your concerns are absolutely reasonable!!

The MH GP is really understanding and easy to talk to. I feel i can be honest with her, even to the point of admitting that i don't know how she can help other than by providing referrals, opinions and medical evidence to support applications. It sounds so stupid in my head to admit that "here I am at the GP, but i don't even know what you can do to help". But i tell myself that its OK to not know and its ok for them to be the ones to suggest things. And it was really good that they brought up the autism aspect without me indicating anything around my own recognition of autistic traits - that was validating and having an experienced external perspective to support seeking a diagnosis in order to bolster applications for supports.

I will see her again in a month, as it is the soonest we are both available.

I have weekly 1hr massage to keep my muscle pains "at bay". Trigger point massage is often better tolerated by me (mental pain management) that some other tecniques on the really sensitive parts. My massage therapist is good at adapting to what works best for my pain tolerance and muscle release. For example, I mentioned to her the pain and fatigue challenges i had when trying the yoga stretching video, and she suggest she could also work in a bit of assisted stretching too for those muscles.

Massage therapists can adjust their pressure to your preferred and tolerable levels 😊. And a good massage therapist should be able to adapt which techniques to used too based on how your body responds and what it more tolerable for you. 😊.

Sometimes it can be a matter of finding the right experienced massage therapist. Its totally OK to book in just once to "test them out" and then decide whether or not you felt they were responsive to any feedback you gave (pressure, pain, etc) and also to discuss their own willingness/flexibility to try different techniques to see what works best for you. 😊

My person way of testing a massage therapists skills is to give a general history/idea yes, but see what they pick up on themselves just from the feel of the muscle without me saying if things hurt more/less in that specific point. 😉. Both my massage therapist and my chiro can feel my body and always pinpoint the spot that is most painful 🤣. And this is me facedown so they cant see if i wince or screw my face up in pain 🤣.

I can claim rebates from my private health insurance for the massage and chiro. I think i get about $26 back each visit, but i guess thats less of an issue for me because over the course of the year i will reach each of their funding caps anyway ($250 and $350 respectively).

However i dont get any rebate on my counsellor because she is not a psychologist.

I did hear though that some health funds are going to start giving rebates to counsellors with a Masters of counsellor. However mine "only" has a Grad Dip, so even if my fund did expand to allow counsellors rather than psychs it still wouldnt qualify for rebates.

I am yet to be presented with a good reason why health fund rebates shouldnt be allowed to be used to cover the *gap fee* for services. After all, its not like their rebates would cover the whole gap anyway! But it would definitely help with affordability for those who first use the 10 MHCP sessions but may not otherwise need to use non-MC-rebatable additional sessions up to the amount that would exhaust the service cap limit.

I don't think it would drive the price of those service fees higher.

I know there are currently legal rules around it preventing it. But i dont understand *why* those rules are in place when its not resulting in actual double-funding (i.e. a total rebate that pays more than the total fee charged).

Because my counsellor is not medicare-rebatable, it also does not count towards my medicare safety net 😭. I have already paid over $1k for counselling since Jan 1st. And none of it is recognised by medicare as an out of pocket medical expense. (But it also wouldnt be if it were with a psych after the first 10 sessions. However 10 sessions with a psych would cost $2k out of pocket).

Likewise my massage and chiro fees this year have also been a similar out of pocket expense each (just under $1k this year so far each) and not recognised at all by medicare towards the safety net.

If the 3 services were recognised by medicare, i would have hit the safety net during in less than 1 month 😭.

I guess with this new GP I will rack up my safety net quicker. Esp if/when i get appointments with the chronic health condition GP too! 😅

Sorry for the financial "rant". But it does feel good to be able to talk about it with people who "get it", even though we can't change it.

Hello and hugs 🫂 @AlwaysMyself 😊