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

You are correct on both counts, @Blackcloud .

I did a 3-week fulltime university exchange as a subject for one of my university subjects. I went to a university in Germany, it was great. It was a program designed specifically for International Student Exchange. I'm not sure how the government payments would go with it, but it might be worth asking them whether the 28 day rule can be given an exemption under "special circumstances" because you would be doing your usual Australian-based degree studies whilst there, not "on holidays" or migrating.

Well done on having completed 4 credits and well on your way to completing the 5th! 🥰 good thing about needing 8 credits first is that it gives you time to plan for an Overseas Study and save up money 🥰. Pick the university/subject that if of most interest and relevance to you, and chat to the student exchange contacts about it to make sure it will be what you expect/hope/need.

Have you travelled overseas before, other than to visit family/friends that live in the country being visited?

The reason i ask is just because it can feel very different than going to visit people - travelling independently in a foreign country. 😊. But totally do-able! I just know the first time can be quite stressful if not properly prepared and confident for "what if xx happens" situations. (I have a few ... funny stories of things going wrong when i have travelled 😅 but they've always been worth it!)

I love talking neuroscience & psychology 😅. Unforunately the people i know who also have an interest in it are my treatment teams 😅 so i cant just socially chat about it over a coffee lol. Darn it! I need to meet some people socially who are as interested in it as me. But in the upside it means my new treatment teams and i are generally in-tune with each other and good rapport 🥰.

My DSP application. The $$$ so far for DSP has been due to GP hourly fees 🤣. I have 2 GPs that treat different things. But the $$$$ for NDIS application has so far been the psychology assessment for autism/adhd/depression, rheumatologist, occupational therapist (referred, but not booked yet so maybe wont happen due to timelines), and letters from my allied health providers. I am hoping i can reuse my DSP evidence (GPs letter, reports, etc) for NDIS since my DSP conditions are permanent conditions for NDIS too.

I was very fortunate that a GP clinic I haven't been to in over 10 years still had my file, which dated back 18 years ago. So I paid to get it sent to one of my GPs 😊 so we have the old reports/letters/diagnosis as evidence & dates.

Also i guess in hindsight it has been fortunate that i started reaching out for help 2 years ago (after nearly 10 years of try to self-cope unsuccessfully because i didnt believe there was suitable affordable supports for me; i mean, i was right - there weren't. But at least i had my clinical state documented!). It means i have had 2 in-depth psychiatrist assessments in the past 2 years, plus a failed neurostimulation psychiatric treatment, plus innapropriate referrals to low-intensity programs which caused exacerbation, plus a documented record of mental deterioration over the timespan, culminating in a total inability to work and a few trips to the ED and OP crisis team interventions this year 😥. But its all really consistent and states some very confronting facts that evidence the severity of my health, even though its heartbreaking to look at what has happened the past 2 years, let alone 25 years.

My GPs are very sure i will get DSP. Between MH and physical health, i will likely have over 50 points across impairment tables. (20 points is the requirement for a DSP eligibility).

My work situation is ... unusual. I am still a permanent employee, and can remain one until i am able to return to modifed/reduced work - at which time i will likely go through medical redeployment processes. However once my accrued leave is used up I will be on unpaid medical leave - and hence the need for a DSP. And DSP will later supplement my reduced income.

I have always worked since leaving high school, its just been a matter of how many hours per week. Currently I am at the longest time ever without working, and its due to my medical leave (not lack of employment).

I do remember once having to attend a disability employment service though, as i was increased capacity for an extra 7 hours per week so i needed to find an extra 1 day/wk as my employer didnt have any extra shifts to give me. They were stressful and hopeless. Kept suggest fulltime and/or physically-demanding jobs which my centrelink medical assessment (and GP) had clearly stated was not appripriate. I did all my job applications and resume writing myself, and when i asked them to review it they took too long (had to already submit it). I did give them my resume when i was first referred and they looked at it and said they had no comment/suggestion because it was already at the best they could do. And yet i still had to attend there physically every week, despite having chronic fatigue as one of my medical disabilities. Very bad experience for me.

I'm curious about your reasons for not wanting to work (in the past; I know you are currently doing work/volunteer placements 😊), but only if you wish to share. 🥰

Update from my side...

- second half of week went mentally-well, but my blood pressure symptoms have continued to be very concerning to the nurses so i have been tracking it (when i remember! Consistnecy of time of day isnt easy) so that i can discuss temporary medication for it with my doctor. It is something i have previously noted to the doctors but it had only been "during acute crisis", not the prolonged post-crisis hypertension which has occured this week. It appears i have been rather lucky to not have had a stroke a few times this past week 🥲, according to the nurses based off my symptoms & pressures. That was not easy news to hear a few days ago, since I have already been trying to do everything i can to calm/breath/etc to reduce it, and the only other option is to call an ambulance / go to ED which I have a strong mental resistance to. But i have agreed i can call an ambulance (who cant force me to go to ED unless im incapacitated) next time it happens that severely. I guess this is a different type of "safety plan" to what is usually required for mental distress 😅😓. I just feel so stupid/wasteful when its due to emotional distress, but a stroke would be very serious.

- pdoc's proposed plan for me for April (until we start the med dosage) was accepted by the referred-to provider. This should help give me some lower-stress respite plus extra non-clinical support prior to the Trial. I can't go to a hospital (unless absolutely required) because it would impact the research data (and I dont want something unrelated to the research to do that), so this is our alternative plan to avoid hospitalisation.

- i need to figure out how i need to best grieve the confronting history of missed-diagnosis, dismissals, and (in one case) a pdoc not believing me in the past. My inner justice wants them to be aware of their past mistakes (in case they are not since aware, to provide awareness for future patients). My hurt would like (but not need) acknowledgement and maybe a genuine apology (when dismissed/failed/disbelieved). But I also know most people do not take painful feedback well, and some people get defensive-aggressive in response. I'm also aware a complete lack of response would be painful and reinforce the past experiences of dismissal. I'm not yet sure the risk-benefit of it, especially for historical providers (but they were the pdocs who should have noticed something wasnt normal and investigated further). The number of incorrect representations in reports/letters/etc is painful.

- i was able to speak to my physical-health GP briefly after we completed the paperwork, about how severe i was when i left his office last week. I was able to give him to read something i had written the day prior to my seeing him, which would have been very confronting about my state of mind, as it had explicitly stated my distress-triggers and what i think when triggered. I was able to then tell him that was "before i had the meltdown in his office" and explain that if i wasnt mentally-incapable of breaking the promise to my pdoc (which most peeople dont have to my degree) that i wouldnt have still been alive when he called 2 days later. Whilst he didnt say much, i think he understood and accepted the seriousness and i have hope that it might stick in his mind for the future with other patients. But hoenstly i dont think he knows how to react or what to say/do when he sees someone with those thoughts; in hindsight i wish he had asked what he could have said/done (or that i had offered him to ask me if he is ever unsure). I guess i don't experience the "freeze" when i hear a person in distress, so i don't really know what that is like for others.

Im falling asleep typing this, so that must be enough for now.

Weekend has been emotionally and socially challenging with my visitor. They go home tomorrow evening. May talk about it more another time.

@AuntGlow @tyme @Cuddlebear @Blackcloud @Jynx @Chasingsunsets @MissGremlin @Shaz51 @Flutterbug9 @Captain24 @creative_writer @heartathome

No expectation to respond. Just tagging as sometimes you like to know updates and i dont know when i'll be able to get much forum time.

@AlwaysMyself i shall reply tomorrow sweet but wanted to send you love and hugs and i hope you have a good night's sleep ❤️.

Hey @AlwaysMyself, thinking of you my friend really sorry I haven’t been able to respond as quick as I’d like, I know you are alright with it but my heart has to acknowledge it from my end 🫶. Thanks so much for your updates definitely want to respond got probably a solid 1.5 days and then hopefully a better chance 🙏

@Cuddlebear my friend I have been thinking of you a lot, definitely very keen to check in I hear things have been super difficult for you lately, sitting with you, your forum fam is with you, you aren’t alone here. Just on one more over night then hope to be back and get some posts sent, I’m desperate and apologise to you as well for not being able to write back sooner ☀️🙏

@Chasingsunsets I’ve not been to any activities last couple weeks. Forum and non forum things all got too much and I hit shutdown with last couple days in bed.

activities were going good. Couple hiccups with billiards, unsure if I’ll be continuing. Flare up of physical health issue was one hiccup. Other hiccup due to another person saying something they had no right to. I got angry, stood my ground and had my say. No apology from the other person, which to me shows no respect and is rude.

Upcoming appointments with 2 allied health specialists soon. I’m hoping current issues with one aspect is due to stress only, hoping no changes found via recent tests done

I need to update my settings to way I used to have them, email notification when I’m tagged in a post. Similar to other people, I don’t have the time or mental strength to read through every post since I was last signed on. Works well for knowing when yourself and others tag me.

I’ve currently got a tentative booking for late May for next lot of pain medication infusion. Outcome of upcoming specialist appointments will decide if plans for infusion get green or red light. If get green light, I will be doing brief update post each evening of the days I’m in hospital. You will be one who I will be tagging, unless I hear different from you.

im unsure about @AlwaysMyself and @Cuddlebear. Would have definitely been tagging rav3n, no benefit now they have left. Waiting for response/s.

thinking of you . Hoping things settle for you sooner rather than later. 💐💐

Hello @AlwaysMyself,

Thank you so much for updating us around your psychiatry appointment - it sounds like it went really well and was super informative! 🤩

I am going to respond to one of your other direct messages from the 29th, 2.30am here too. 🥰

It would be really tough reaching out to people who have limited availability, I do understand how vulnerable that can feel - I can see you are really trying here too. What came up for you when you weren't able to get ahold of anyone? And were you able to come here for support?

Thank you for sharing the research articles. They hold incredibly insightful information - so, so interesting. You've picked out such important topics of conversation (and outlined/referenced them so well!) I think @Jynx would appreciate this research too. The double-empathy/feeling misunderstood would feel really isolating... to feel seen and safe in connection is one of the most important things we need as humans. And you're right, that is a huge protective factor. To be able to take up space and feel supported as someone who is ND is so incredibly important. It's also so interesting to read the correlation between a higher IQ and increased risk of suicidality. From your perspective, why do you feel that is?

I don't live with autism (though the adhd diagnosis is on the horizon haha), but the notion of being more self-aware and masking to be socially 'accepted' is something I really relate to, and the more I experience this, the more overt my depression symptoms are during that time. I have so much empathy for your experience and I am so glad I have been able to learn more about you/be a part of your healing journey. I trust that things are going to shift for you and I am so proud of you for embarking upon this new chapter. 💛

@AuntGlow With being a recently self assessed autistic the entire aspect of autism being a spectrum is something I’m personally struggling to try to comprehend, on some aspects it reminds me of trauma ie same experience impacting people differently.

eg entire sentence in bond some people find very distressing, feeling the words to be containing anger thus leading to feelings of being overwhelmed.

other people find the sentence difficult to detect the tone and emotions intended. With others the words have zero “negative” impact.

I’ve been reading information my psychologist has provided me with which gets overwhelming at times. Something I found interesting is the commonality between people with autism and the reactions to feelings of being overwhelmed. Also the overlap of these reactions and the ‘negative’ impact that can happen with communication between autistic people.

The brain somehow detecting others who have autism/autistic traits and easily finding a connection is amazing. that the nervous system and brain reactions to things can make the good connection very challenging totally sucks. Something my psychologist has said can be one of life’s biggest challenges for autistic people.

human brain is definitely a many faceted organ

I know well the feeling of being a week behind in posts 🤗😅; that was very helpful to reference which date/time so I knew where to look back - thank you. I have edited it to tag @Jynx if they’re interested, as you mentioned. I guess I am a researcher at heart.

Apologies this reply is going to be really long. Take it slow.
I’ll tag @tyme just in case they are interested in further reflections on these questions asked.

---

@AuntGlow wrote:

What came up for you when you weren't able to get ahold of anyone? And were you able to come here for support?

I genuinely don’t ever “expect” people to be available, so if they don’t reply or say they aren’t available that’s OK with me in terms of “that’s fair”; I know for many of them its not a reflection of their care for me because they have shown their genuine care at other times when they are available. There are others though that I will no longer reach out to when I need help because their words do not match their actions and whilst they show social interest and say they care their behaviours even when they are available do not demonstrate it (perhaps it is their own uncomfortableness to have those conversations, perhaps they don’t know what to say, or perhaps they don’t really care that much - I’m not sure; but regardless of the reason those people have show they do not have the capacity to and that’s OK and acceptable). People have the choice as to whether or not they wish to engage, and I always want to respect that - it doesn’t matter how distressed I am, that comes first. The people I struggle with are the inconsistent ones, because i cannot predict where their boundaries will be set on any singular occasion - sometimes open & supportive, sometimes cold & closed. (And this does make sense to me, and I can recognise how this related to Anxious-Ambivalent & Avoidant attachments, whereby never secure in whether needs will be responded to so you either have to “be prepared in case of not” or else just never be open. I have spent most of my adult life being avoidant, I guess, likely due to the anxious-ambivalent patterns of childhood, although I was not an anxious or ‘clingy’ child - more ambivalent-hurt aspects mixed with confusion due to inconsistencies.)

The times referenced re: reaching out to friends for support and them not being available, no I was not able to come onto the forums. The thoughts are not allowed to be posted here, so I know not to. And not being able to be honest about what I am thinking or feeling and having to mask it makes it worse, so I know to avoid the forum during those times. "The forums are not crisis support." My first port-of-call had been the Safe Haven, but they were at capacity (but slipped me in for a short time) and asked me to go to an Urgent Care clinic to ensure my BP wasn’t too high (due to physical pain symptoms from it) and they had to inform the outpatient MH triage service who then called me as I was arriving home; I guess that was good because I was able to talk to them for a bit about it.

The 3 days prior to that, when I reached out to someone in extreme need - that was when I ended up at Emergency (I wish I could tell the full story, it is ironic. The short version is I was trying to not need to attend the ED, but then a staff member said something and I went into a severe meltdown which resulted in me then needing to attend the ED once I was recovered enough to be able to communicate calmly (which is where the friend helped me to calm enough to do this).) This is why the next day I reached out to 2 people to “pre-plan” if I could contact them if things went poorly that day; but both said not that day.

When I’m in a state like I was on the ED-day, it’s both not suitable to post and I don’t have the words to say things with proper care so I instead go mute beyond carefully prepared phrases or yes/no answers. This is also why the nurses/doctors don’t realise how severe things are because they don’t ask the ‘right’ questions. E.g. they will ask “have you harmed yourself?" or, "Are you going to harm yourself?" rather than asking “do you want to harm yourself?”, so they assume I am not in SH/SI distress. I am learning to be able to respond instead with “I want to, but I don’t let myself” - so that I can communicate that there is extreme distress in these matters but I just have total self-control over it for as long as I remain willing to. But I don’t like to say that because I am concerned people will over-react (involuntary) or from my past experiences it will be dismissed completely which causes further emotional harm and future emotional/cognitive barrier to seeking help. But I can’t blame them for not knowing how severe it is if I haven’t told them - so therefore not telling them leads to a good reason for them to not realise 😉 and no harm experienced from being dismissed. Yes I know this is flawed logic ultimately, and I am not saying it is a helpful perspective - but just an honest perspective of what I realise my mind does, and what I have been trying to challenge/combat the past 6 months. It’s a defence response.

---

@AuntGlow wrote:

It's also so interesting to read the correlation between a higher IQ and increased risk of suicidality. From your perspective, why do you feel that is?

---

Thank you for asking. I will put it in a content tag and strongly suggest/request people do not read other than those who never get distressed/triggered by SI themes. And yes, masking accentuates the feelings of “other” and disconnection, in my experience - which then drive depression further since I am very socially-oriented.

I realise that sounds really negative, and I can also see some possible changes this year which may change the course of life.

• I may get adequate financial support from DSP & NDIS to live off. (although without work income also, a DSP is not a liveable amount with my health needs since they are not covered by medicare)
• I may be able to continue to work a few hours in my exisiting profession in a different team/role with adjustments, which would provide a better-than-DSP income. (Although the lack of a centrelink concession card would easily make this financial benefit disappear)
• The clinical trial treatment could change my perspective on death (I joke that maybe a negative experience on it could instil a fear of death in me)
• The clinical trial treatment could activate new neural pathways which provide a positive experience of daily life. However I am cautious that this would not likely be a permanent change if it is neural-plasticity based.
• It is possible the psychiatrist integration discussions somehow provide some perspective that I have not previously had. I realise this is possible also within the context of his experience with ND differences in thinking and how to combat that. Although I don’t know how much psychotherapy he normally/previously does (outside the trial) as compared to assessment & medication.
• It is possible that I will find a balance of work that is not causing distress, a level of pain management & physical supports when I am not in pain and/or exhausted, a level of social engagement that meets my social connection/drive needs, a home living situation that doesn’t exacerbate my MH, and that within that context I won’t be frequently distressed (since there are no adhoc support services suited to my needs), and then I can be content to continue living in order to find meaning in helping others.

I keep myself open to these possibilities. But there is no guarantee any of them will occur (or not occur).

@AlwaysMyself With balancing life and forums, I don’t have capacity anymore to be on the forums all the time or to be reading long posts (long posts can also be too draining). I also don’t have the time to be reading through each and every posts since I last logged on. I try to read etc to each post that I’ve been tagged in (eg email notifications).

From the little bits and pieces I’ve managed to find and read of updates on various things with yourself, it sounds like things are keeping you very time poor with things weighing heavy on you. Sorry to hear this.

posting this as I have been and still am feeling very confused regarding few things. The following are only about how things left me feeling, which includes feeling confused. Things I don’t understand and hoping you might be able to provide some clarity.

I tried to explain aspects of RSD including aspect of perceived rejection. Response left me with feeling I am asking you to “fix things” for me. As we talked about once before, I have chatted with you same as another one else, casual enjoyable 2way chats including empathy for each other. I’m confused where the mention of “problem solving” or “fixing things” for me comes into responses.

Im confused where you feel I should be asking the writing of posts I’m not tagged in why I’ve not been tagged. I totally do not understand suggestion to read posts I’ve not been tagged in and then contact the writing asking for reason/s why not tagged. Feeling very confused how post mentioning impact of RSD led to the response

posting of words of friendship, support etc and yelling them by bolding them. I don’t understand. Has left me feeling confused about intent behind the words. If no harm intended, I don’t understand why bold the words etc (yelling them via writing)

post on “we are just all walking each other home” thread, 1 April 9:02am. With flow of post and location of my user name, im confused if Im been tagged as a ‘mention’ or if have been tagged as part of a chat

wishing to clarify info within TW box above. Decision to continue with trial, meds etc and to continue living is dependant on outcome of claim for DSP? Asking, in hope, to prevent misunderstandings and communication issues

remembering you recently having mentioned the last amount of email notifications you receive from posts you are tagged in and having felt overwhelmed by the numbers, I’m trying to only tag you as a response to post from you.

no idea progress of things leading up to the trial, start date of the trial etc. that’s ok, no pressure or need to share anything you prefer not to

if you would like to be tagged in daily update for when I’m in hospital this time you will need to let me know. If no response, I will not tag you

@tyme @Jynx

I read your posts @AlwaysMyself. I do struggle to respond though. Please don’t take it personally, it’s just me and not having many words for the in-depth posts. I do like being tagged in them though and seeing all that is going on. I do think of you quite often. Especially now that you are off all your meds.

I get the not wanting to live if this is all life is. There is no point in it. No point in continuing to have a life that feels like nothing. I resonate with a lot of what you say.