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

Thank you @Chasingsunsets for your update, footy info and brain chem talk 🥰. I dont watch footy (or any sports) but i used to always hear friends talking about the state of origin when i lived in sydney. I havent even seen ads for it where i am now 😆 but i do live under a rock these days too. NSW winning a match seems so rare these past years 🤣.

I will post more about the trial and "what now" in a separate post. But yes, i find brain chem & related things very interesting to chat about too! I just wish we could more openly talk about specific substances and how they work differently but similarly, etc because it is fascinating! I had a short convo one of the days with the psych about the one my trial is for and around schizophrenia (my curious mind wondering if its the same thing happening) and he did confirm its the name neuro receptor invovled, and the difference is anti-psychs deactive it where as this med activates it.

I know one of the other novel treatment meds invovled glutamates but is a different neuro receptor, but i was curious and did a google and yes the one for my trial *also* involved increasing and decreasing (in different regions) glutamates. Interesting!

I am curious what you have learned in your discussions and research, if you wish to share more?

I havent read much yet about the chemical reaction side of the meds yet, more around what the therapeutic process of my one can feel like, and why a brain may not respond to it at a specific time, and generally about how it affects neuroplasticity (which i think glutamate may be invovled in? As the other novel med for TRD that works on that other neuro receptor and affects glutamate also increases neuroplasticity). My GP has suggested the other novel TRD treatment as an option to consider too, but it is also very expensive and i think it is more of an ongoing-need rather than a "full course has a possibility of longterm change" (rather than semi-regular ongoing trearments) - but research is still ongoing into the duration of the effects for the one i am doing.

I would be very interested to hear what ypur ideas for your rollercoaster balancing act are, but only if you want to share. I don't really know what you have or haven't tried before, or what feels right for you / interest in? (Other than as you note now, glutemate-related treatment options).

Update on clinical trial.

If not tagged please do feel 100% welcome to comment, not meant to "exclude" just means i forgot you were interested still (and/or i dont want to overwhelm people). If tagged don't feel you must respond or still be interested - do so only as you wish to; never expectation/pressure.

@Chasingsunsets @Cuddlebear @Flutterbug9 @Jynx @AuntGlow @tyme @Shaz51

Had my last (3rd) dosing session yesterday. Won't know for a while what I received. Unfortunatley for me I did not have the medication-induced experience that one would hope/expect from the medication, however this does not necessarily mean I did not receive the medication as brain/mind can be non-responsive and/or block it. I don't like the not knowing, but am relieved to hear I don't have to wait quite as long as i thought before I find out - still a while until I find out though. If I end up *not* having had any doses of it (25% of participants) then i will be relieved 😅 because then it wont have been a my-mind issue. However I won't be too surprised if I had it on one or two occasions and had blocked both times -- but i would be disappointed if this was the case 😓, and a little reticient for whether that means my brain is a chemical non-responder or whether it just didnt feel safe yet to allow it (in which case would bode better for potential private treatment after a longer mental preparation process?) - however there is no way to tell which it would have been!

Having said that, it doesnt mean at all that there has not been value or benefit from the treatment (and I have 2 more sessions of psychotherapy over the next 2 weeks, but I'm not sure how much we will explore deeper the topics or more do wrap-up? There may be wisdom in focusing on handover planning more than topic-diving to not open pandoras box, but instead pass that box less-opened back to my usual therapist 😆). The sessions have been a very good opportunity to delve very deeply and vulnerably into topics during the 6-7 hour sessions that isn't as easily possible to do in a normal 1-1.5 hour session, whilst also being brought *out* of that pain/mood too.

It also been a very positive experience of rapport, being heard, being validated/supported and given genuine compassion. And building the safety to speak of things that are difficult, hidden, and don't feel "allowed" to talk about (whether shame, embarrassment, taboo, of fear) - which helps build some confidence to be able to transfer these topics back to my other therapist even if I don't naturally feel comfortable opening up about them, but since I have trust in her also and their validation that those feelings are understandable/legit/allowed to feel.

I know i will miss the connection with both the therapists - but that is just a reflection of how i felt they accepted me and their way of relating and their personal nature/style "clicking". This is a good and natural thing to feel that i think. I don't mean it in any way to suggest a "cling" or "dependence". I will miss the shared stories and the shared understanding. I will miss the things one of them would say to make me laugh (sometimes unintentionally, often at their expense 😆; but usually with them in shared humour).

Where to from here?

I wont know for a few months. But if i did not receive any of the studied-medication then I can be offered it next year (a long wait due to the research follow-up period and then their own availabilities). If i did receive it, then i have the option to consider trying it privately (at my own expense) to see if my brain can respond to it as intended (a big financial drain though if i don't?). Or whether i consider alternative treatment options instead or not.

I don't know yet. I will try not to think about it too much until I know whether or not I had any doses. If i did have some, i hope (it would be helpful) to be able to chat with the therapists about whether they think my brain would respond fully or not if i tried it and if so what we could do to increase that chance (prevent my mind supressing it).

I hope that gives a decent general overview update?

@AlwaysMyself as I mentioned to my psychologist couple days ago, I find it really difficult to process when people say about my inner strength or being strong. I don’t see it within myself hence having other people say it, my brain doesn’t know what to do with the word/s. It’s like the word is completely foreign to me (hope that makes sense)

it’s been an emotional roller coaster ride the last approx 6 to 8 weeks and feel it hasn’t stopped yet. I’m not getting enough time in between things to even start to come off ‘constant high alert’ status. Even the slightest thing is having negative flow through impact.

I want repeat on here things I’ve mentioned in other threads.

my appointments with my psychologist are 45min duration. Tuesday, due to conversations that kept rolling, I spend just over 2 hrs with my psychologist. Yesterday I felt the impact on my nervous system. Was good to sit and talk in 2 way conversations.

Since then I’ve received and completed DASS21, PCL-5, ASRS and CAT-Q questionaires which my psychologist sent me via email.

I’m hoping things have changed with the way claims for dsp are handled @AlwaysMyself Used to be the only way someone found if they were eligible or not, based on medical evidence provided, or needed to provide more info (for appeal) was after claim was processed. If medically qualified but need to meet POS requirements, those claims have possible of being rejected.

A cousin of mine is currently waiting for his dsp claim to be granted. I don’t know exactly when claim was lodged, only that it was weeks ago. He is a manifest case as he has a terminal condition. Only info he can get is earliest claim will be finished is August. He may not make it to August

@Flutterbug9

I think it's ok to feel something is difficult to process, especially when it's not how you see it within yourself.

I am curious (but only if you wish to answer, I certainly don't mean any pressure to), is it distressing to hear other people see it within you (even if you don't see it)? Or does it feel unusual/comfortable but perhaps also a little nice to hear that people see positives sides even if you don't? 🤔

But i suppose more importantly - overall, do you prefer not to be told (by me, in this case) the positives/strengths I see in you, or prefer to hear them even if they may be hard to process?

I want to respect your preference.

I had my own "mental gymnastics" this week with something the pdoc said that my brain didn't want to come to terms with, even though parts of me already suspected it. Certainly was not a comfortable experience for me, but I do also know it was validating to hear too for me in this case.

Fingers crossed for your cousin for their application. When i lodged I was advised up to 3 months to hear the outcome. After the psych report interview I was told I should hear back in a month after that (2 weeks for their report, 2 weeks for centrelink to then do outcome); if I do hear back in that time, it would be about 2 weeks less than the 3 month mark, so that's pretty close to the expected timeframe I was given.

I'm really sorry to hear they may not make it to August 💔.

It’s hard to describe @AlwaysMyself Hearing anyone say the word “strong” in regards my character etc I feel I’m gagging. Only word I’m comfortable with when I look back over my life is Survivor to which there is zero feelings attached.

my psychologist changed her words and said they see strengths in me that would like to talk about and explore. I have agreed to that.

”mental gymnastics” …. anything you want to talk about?

how are you feeling by now?

sorry for the typo mistake in previous post. Wording should have been “I won’t repeat things on other threads”. I know you will read them when you can (no pressure at all). Typing causes shoulder pain at times, also dealing with brain fog feeling at times

You are more than welcome to laugh at my expense @AlwaysMyself 😆

Ive known for short while I needed to replace the air fryer I’ve been using. For few different reasons, I hadn’t got around to doing so. I had done research and knew the one I wanted to get.

yesterday I bought and brought home my new air fryer that weighs 11.5kg. Yep, that’s correct.
Car to garage to kitchen table. Finally onto kitchen bench yesterday evening. Omg, I won’t be moving it again.

It’s referred to as multi zone air fryer. 2 ‘baskets’ side by side to cook in, each with own settings. Main reason I bought it is centre piece can be removed which enables entire 39cm to be used for cooking

@Flutterbug9 sorry to hear the shoulder pain is enduring still (my memory is you were going to have an injection for it; i will check back on that thread for the update - but sending hugs in the meantime as I'm hearing you the continued pain regardless). I'm glad you are putting that side of practical pain-management as a priority above typing more 😊. I will get to older posts when i can, but also know I am so far behind that its best for me to read most up to date tags first since things change over time - but that means posts from the past 2 weeks arent too far back in my email log since I havent been getting as many due to being absent from conversations.

I personally am glad to hear you've said to your psych you are open to listening/talking/exploring with them about the strengths they see in you, because I think openness to perspectives is a valuable thing - and respecting that one does not have to agree with the others' perspectives but sometimes hearing it can give us additional insight or things to consider which we can then choose to incorporate into our own perspectives or contextual awarenesses. (And i mean this holistically in life too, not just in a scenario of self-image or strengths.)

But in saying this I would of course respect your decision to not want to to also, and your right to say what is or is not helping you through the process. 😊. (I know you already know this, and you've already shown the skill to do this with your past psych and this one 🥰. And remembering that gives me encouragement to be able to ideas to my counsellor on what i have found helpful in techniques the past few months that maybe she could consider incorporating too if she felt trained and comfortable to).

I sometimes find it interesting to self-reflect on why certain words (or concepts) evoke emotional resistance inside me. Can be revealing, even if challenging. And it's OK to respond in a strong negative way to a word that others respond positively to 😊🥰.

Just as an example, i know i personally am OK with "strengths" as i dont have negative attachments to the word, but for me "survivor" has always felt resistance from me (when applied to myself - not to others!) even though I understand that for most people it is empowering and encouraging to many others. To me I feel "I didn't have a choice; and I still came out with harm" and i feel inside that the concept of "surviving" is somehow dismissive of the impacts those experiences have had on my life and the wrongness of them. Like people just gloss over the pain as though "but you survived, you're no longer in danger - its all fine now." Of course this is not how the term is *intended*, but its how my hurt parts feel when used on me.

And that segues quite well to my "mental gymnastics" 😬. I've always acknowledged my childhood trauma had an impact on me and might have been considered diagnosable as ptsd when i was a child and teen, but have always told myself 🫣 that I dont have ptsd, "i've dealt with those symptoms - I dont have nightmares anymore, i can be OK with appropriate touch and massage, i can do medical procedures when required, i can trust and form friendships/relationships with males, etc..." (things i couldn't as a child/teen). The pdoc knew of the existance of this childhood trauma, and he also has seen/heard a lot of my mental-barriers/avoidance of asking for help and stubborn independence even when I know its not helpful for me, and the many recent events that have been triggering/exacerbating crisis for me. I also knew that these may be rooted in a few different early childhood experiences, but I would never let myself consider this as ptsd.

After asking/hearing about the traumatic experiences, he explained alittle about nervous system and also how the age at which i was also makes sense of how it presents or does not present for me, and then went on to casually state that under the depression is also ptsd. (We had not labelled it as such until that comment, only as "traumatic" and "feeling unsafe"). Cue mental-emotional rejection of the idea of PTSD as a diagnosis 😅. And it took me the evening to process through *why* I feel that strong response. To me, i'd been taught ptsd had to include things like memory-flashbacks or nightmares or panic attacks or avoiding physical locations or reminders of the event/experience. But i have cognitively overcome all that 10-15 years ago. And ptsd experiences sound so "loud" (not literaly noise, emotionally loud) and intrusive into everyday life - and thats not how I experience these things. To me they feel "quiet" in resistance and inner turmoil and mental-debates/arguements about "no, i can't do/ask that. No, i must do it myself. I can't rely on others, i might be let down/hurt." And these things always seemed rational & mostly-normal to me because they were rooted in real and recurring situations in life where if i did accept supports i would often be let down, or if i asked for help / expressed a problem, I'd would be dismissed or ignored. There is rational, logical evidence to it these conclusions. PTSD in my mind was an irrational/over-response to past experiences. Not the present day "quiet barriers" and exacerbations of old emotional wounds being reinforced.

Of course if I someone else was telling me my story *as their own story* I would suggest (or validate) it is a trauma response consistant with emotional flashbacks of ptsd. I knew this inside but could not admit it to myself - hence it triggered such a strong mental-emotional struggle for me to hear him label it casually as ptsd. I am stubborn at times; but if a doctor formally diagnoses something and i know emotionally that it fits, then i will accept it. But his role currently isnt diagnosis (its temporary treatment) so that means he hasnt diagnosed it and i can still mentally reject it right?? 😅🤣 its not an official documented diagnosis 😂. (Yes my logic brain is this rigid! Even though i now would accept it as a diagnosis *if* a doctor wrote it down as one 😆. Its like not accepting the validity of autism from my GP until the psychologist confirmed it after assessment. Didnt matter how much sense it made or how much it explained things - without a formal diagnosis i cant accept it as something i say i have.)

Yes you are welcome to roll eyes or laugh at how stupidly stubborn i can be with myself, and how hypocritical this is compared to how i would treat/advice someone else. I argue about this inside myself all the time.

@AlwaysMyself Thank you for sharing that info. I know it’s not always easy to do that.

I have deliberately not been tagging you in my posts recently. With things you have mentioned including not being able to be on the forums very often, I thought it was best option. I’m aware I did this once before which you didn’t appreciate. I ask not to be told off this time or be left feeling I made the wrong decision.

In brief, shoulder pain due to the tear will most likely continue for quite awhile. It’s a rotator cuff tear which may take the rest of the year to heal with physio for strengthening continuing long after that. Atm waiting to talk with pain managing dr next month before starting physio

these will help for quick catchup for what’s been happening with me last couple mths and still dealing with.

first thread, from this post onwards

https://saneforums.org/t5/Managing-thoughts-of-suicide/My-silent-battles/m-p/1878423/highlight/true#M16919

Second thread, from this post onwards

https://saneforums.org/t5/Our-stories/Flutterbug9-s-space/m-p/1876725/highlight/true#M252058

“can’t ask for help” …. “have to do it myself” …. “doesn’t get done if I can’t do it myself”. I know these all too well and, at times, my memory replays the words and one of my parents voices saying the words. Things my parents both believed and I grew up knowing no different. Stubborn and hard on oneself, that’s me. By now, I know there are physical things I can’t do and have to ask someone for help. Majority of daily things I still do, including things I know I probably shouldn’t. An example: apart from work that had to be done by tradies, my father did everything with construction of my childhood home. Wooden frame House was started being built, including concrete stumps, years before I was born with final stage (last 2 rooms) being built when I was about 12yo. I can remember helping my dad laying the battens to support the floor plus the studs etc for external walls plus 1 internal dividing wall. Remember my dad cutting in and nailing the roof battens prior to nailing on the roof. This from a man who had zero training or schooling in this area.

Even nowadays, there is a lot of stigma around MH conditions, some more than others. I personally have found and experienced ptsd is one. It sounds like the pdoc you have been talking with has explained lots of different impacts that someone with ptsd can have, especially the very subtle, semi hidden aspects. you may find things need more time for your entire system to feel ok about possibility of ptsd. Think we both know changing mindset and one’s views on things doesn’t just happen.

you don’t need to answer these if you don’t want to

- what do you think and feel it might mean to you if you are given formal diagnosis of ptsd?

- are there areas or items of concern or uncertainty regarding possible ptsd diagnosis?

for me it was a relief and a confirmation when I was diagnosed with cptsd. Depression, anxiety were words doctors have used on and off for decades with me. Couple years ago I started to feel there was something deeper than that.

atm I’m ok with being self identified autism. I have talked with my psychologist a couple times about my reasons for thinking I may have ADHD and my decision to have formal combined diagnosis at some stage in the future. I have recently completed 5 screening questionnaires at request of my psychologist. Curiosity is a large part of my nature, more so when comes to any type of medical test. I couldn’t see the scores on the questionnaires I did for my psych as they were auto sent to email address of my psych as soon as I clicked finished.

replicated each questionnaires onto identical test on a website that then displays the score has given me more determination to have the formal assessment. Only score that surprised me was cat-q test, my score was quite a bit higher than average range for NB.

survivor. To me just means I got through everything that happened and am still here. The word doesnt even start to touch on the damage caused by everything. Damage that has negative impact on my life to current day. Damage, that I’ve accepted, I will most likely never recover from and will always be plagued by.

I think being able to comfortably feel and say I’m strong got verbally knocked out of me and destroyed a long time ago. Pre the trauma, I was a happy, semi outspoken, easy going child who had almost zero fear of anything. A child who was raised to be polite and to standup for oneself when needed. With what I lived through, I didn’t have a choice, I had to find a way to survive. I lived on auto pilot with the main thought everyday being how to survive until tomorrow. Different circumstances we went through and somehow survived. I completely emphasise with you

its not always easy to see one’s own life as if it was someone else’s. I’ve had lots of times where my mind replays something that happened, replays it as if I’m watching a movie. For that period of time my nervous system doesn’t register that it’s real, has helped me process bits and pieces plus has let me see things through “someone else’s eyes”.

a lot of people find it very difficult to see and follow one’s own advice. You are not alone there.

@AlwaysMyself Anything feel or sound familiar?