My silent battles

It’s more than 40yrs since my last yr of high school. The paper school reports are all well gone. Possibly lost during x number moves.

Special interests and certain subjects I excelled at school. Mathematics, I remember in grade 5 helping others in my class plus, at my request, being maths problems to do at night that were more complicated that being done in class. Form 5 (yr 11) my subjects included 2 different types of maths classes.

I’ve also remember something my mum used to say about my moods and behaviour from a young age. Apparently I was well behaved for limited length of time, rest of the time issues with controlling emotions. It was always put down to me having a bad temper

think I go through mood crashes, brain fog after Thursday evenings games of domino due to mental exhaustion/sensory overload. 11 games of Mexican train dominos consecutively, no breaks, 2 1/2 hours to 3 hours. No triggers, within few minutes my mood drops quite low. night I had really scary, dark thoughts.

Specific order of things people have commented for years are not “normal”. They seem correct and only way to do things by my mind. If not in certain order I can’t settle

I found, and worked my way through, couple online questionnaires which I will print. Scores on both were in top third range

@Jynx wrote

I with you 100% about special interest areas.

Im realising I usually limit how much I mention about special interests so as to fit into “social acceptable limitations and standards”

@Flutterbug9 Yes I figured actual report cards may be a long shot! 😅

I think one of the things I remember from questionnaires is this question about being 'quick to anger'... From that same website I linked before there's another 'pillar' about ADHD folks having trouble with regulating emotions. Like I cry very easily, and from any emotion - anger included. It sucks to be labelled with words such as 'bad temper' - it makes it sound like some personality failing instead of just having a more sensitive and... just downright different nervous system.

The gaming nights are a source of exciting/positive stimulation, right? Do you find you get mood drops often after having been engaging in something enjoyable for sustained periods? I wonder if it's the sudden change from high to low stimulation. Or just crashing out from overload or something.

I believe needing things to happen 'in a certain way' does tend to fall into the 'tism realm. I also feel unsettled if I have to deviate from my routine. Or another example, sometimes watching other people do things on a computer, or even playing a video game I'm familiar with, if they do it differently to me I feel like I need to 'correct' them - even if they end up achieving the end goal regardless.

Have you spent much time with autistic or ND folks? There tends to be a lot more openness/tolerance for letting people get lost in talking about their special interests. I even thought about making an 'infodump' thread for people to be able to talk about their passions at-length (with no real expectations that others will understand or be as interested of course). If you wanted to kick off a thread like that please feel free! For me, watching someone talk about their special interest is the interesting part. I may not understand too much about the content, but I just love watching their face light up when they get to really ramble on. It sucks that you feel you've had to suppress this part of yourself in order to feel a sense of acceptance. You deserve a space where you can infodump to your heart's content!! 😋

Thursday game nights can get quite noisy at times with some people having different volume levels and pitch. For decades high pitch sounds give me a headache plus I hear the sound at distance too far for lot of others to hear. Perfect example is the old house and office phones.

multiple conversations at same time just sound like noise, loud garbled noise @Jynx

yesterday I was one of a large group of people who went to lunch for St Patrick’s Day. Most people appeared to be happily talking, the noise level for me made it really hard to concentrate. Meal finishes and I started to feel I was proverbial fish out of water. After short drive home I felt really low, teary and wanting to find somewhere for safety. Focusing on genealogy I have quiet music playing, become fully engrossed in what I’m doing, loose all track of time. Me and my eyes get tired due to concentration, some mood changes. Nothing compared to the mood crashes plus other things after being around noisy areas.

I find when I’m playing croquet I want to let my team mates make their own decisions, total inner battle at times to stop myself wanting to take over and tell them what to do. So hard not to step in and to allow thenm to make their own decisions. I put my hands in pockets to stop my wringing my hands due to frustration.

I hand write list of chores to be done. Without the list I get distracted and end up pushing myself to get as much done as I can in a short time. Sudden change in plans and I go into freeze mode, can’t remember things or think clearly. Friend helped me today, trivia got cancelled short notice. Took my friend to remind me that billiards was still on

I like the idea of the thread. I’ll have to put some thoughts into what to post plus fight with myself against urge to not say much. Genealogy and model trains to start with, doubt most people even know these are 2 passionate interests of mine. Very busy day tomorrow for me. I’ll try to have a think over the weekend or early next week.

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brief edit by myself this morning.

I found a questionaire that is aimed at parent/teacher to fill in for a young child.

questions on there have been bringing back little snippets of things I remember my mum saying I used to do, some as early as 3 to 5yo.
One strong memory that has come back, remembering my mum telling me those decades ago I preferred to be on my own and was fixated with animals. Books and watching TV shows about animals. If I wasn’t allowed to I would burst into tears asking why can’t I. My pattern of doing things had been interrupted

Appointment with my psychologist went really well this morning @Blackcloud @AuntGlow @Jynx

I took my loops earbuds out just after getting into her room, immediately she got excited and asked me a few questions about which type I had chosen and colour.

based on things the psychologist said I suspect she has autism. comments “those of us who has different brain processing quite often ….”, “quite common for those of us who are neurodivergent to ……”.

Im seriously thinking of taking up an offer from the psychologist which includes her preparing and providing my psychiatrist with letter summarising things we discuss, results of self assessment I’ve done etc and enquiring if my psychiatrist can do the formal assessments (if I decide to have formal assessment done)

im feeling bit on edge today, my normal Thursday pattern was interrupted by unexpected meeting early afternoon.

@Flutterbug9

"things that come to my mind that, through, posts it appears we have in common"

Agree whole-heartedly! It nice to find "similar people" who can relate and "get it", I find. 🙂 Thank you for being your authentic self.

I have not heard of ViSound - thank you. 🙂 I will read about them, as I do get sore ears from most in-ears (although ear infections are still an issue for me, which is why I have bone-conduction headphones for listening to music when at work/bus/etc - but even they hurt my sensitive bones!). I reckon maybe if I am super-careful with cleaning earphones maybe I can reduce the likelihood of inner-ear infections, but I'd need to ask a doctor to understand why my earphones lead to my infections (i.e. bacteria on them, or already in my ears naturally).

@Flutterbug9 Whilst away, we bought some crochet kits from Kmart. They're nice and cheap and cute. 🙂 The wool is difficult because it splits, and sometimes the instructions don't quite express the stitches in the right way (use of brackets). But eventually I figured it out. But it's very slow-going for me, because I keep forgetting how many stitches I have done in the row already (where I am up to in the pattern) 😂. It makes it both frustrating and funny.

What is a "counted" cross-stitch? I am familiar with... normal (?) cross-stitch lol. I didn't know there was multiple types. 🙂 But I've not delved into it, which is why I am ignorant. I know some are on aida cloth and others can be on a plastic-like grid material.

Your description of why you have multiple projects at once is identical to me. I am smiling. Once I put something "out of sight" (into my craft room, so my dog doesn't eat it) then I forget about it. I still haven't finished the touch-ups for the last paint-by-number of the deers that I was doing, because I had to move it to that room-of-forgetfulness.

Even when I'm doing my paint-by-numbers, I need to have TV or an audiobook/podcast on or chat to someone whilst I do it, or I will get bored after 20 minutes.

I am curious of what you see as the originating cause for you, but only if/when you feel like sharing of course. I experience that memories can be painful at times even if they are also validating in sense-making.

Part 2 coming!

@Flutterbug9 Part 2 from 13 March post.

Loving reading about your pets 😍.

Ok, granny smith apples. What did they look like / which type?

Light green with yellow & red at times? Or bright green?

Yes I am seriously asking. I grew up with a love the former, but until this year was confused about why I "liked granny smiths as a child" when we had our own trees but do not like eating the ones in the supermarket (the latter).

So now when anyone mentioned them, I ask which type lol.

I notice this website says they're a hybrid of "green granny smiths and johnathon" varieties, which I notice is also the second type of apple tree you mention lol. This is very funny to me, because of our coincidences.

Did I mention the property I lived on back then used to be an orchid? (unsure if personal or small-commercial).

So lovely that your first quilt was a gift to your family member for their baby. 😍

Fingers crossed still for the pdoc. 🙂 Glad you have the option of ongoing appointments if you want them / comfortable with the pdoc. Mid-May, great! I was thinking it was June or July. Only 2 months more to wait 😍; I know it can still sound/feel a long while away, but it's better then longer away I guess? And never know if there will be a cancellation slot sooner. (Oh, I have been so lucky lately with getting cancellation slots with doctors 😊 and I am so grateful for them. It's happened with 3 clinicians this year.)

Your craft family with handmade gifts makes me smile. I am glad you can still have a few of them, even if most are lost over time.

Sorry you had a hard brain-fog day and weren't able to do the calendar. I will keep an eye out in posts since about if you mention any progress on it since, as I know this was a week ago now nearly. 😊

I'm sorry you felt I twisted your words; I do want to clarify this for you 🙂 But my first just rang the doorbell so I must run!

Hey @Flutterbug9 I have a quick moment to reply whilst my friend is busy 😊.

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@Flutterbug9 wrote:

1 I was raised with the same thing as thing about other people etc. realising this came into my mind so quickly showed me the negative impact it has had on me. I still tend to think about other people feelings/seeing things from the other persons perspective before thinking about myself.
I never intended my words to give the appearance I was saying this was my thoughts regarding you and your mum. I am sorry ir I gave that appearance.
I’ve learnt from our chats you take other people’s thoughts/feelings/perspective into consideration.

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This was the paragraph my "perspectives-considering" was referring to, and why my second-interpretation (after the clarification) was then that you were intending in the original message that you were also reflecting on your experiences, because you initially wrote:

"I found my mind stepped into “need to put other person first, seeing things from their side”. "

Because of the words "I found my mind stepped into", I thought upon your clarification that since you said you know I "take other people’s thoughts/feelings/perspective into consideration" that then you must have been meaning that you find your mind needing to step into that perspective-considering process.

That's why I was confused and misunderstood after the clarification lol. 😊 It's doesn't upset me that we sometimes misunderstand each other. I hope you always know that even if we sometimes misunderstand a post/sentence, it is never my intent to 'twist' your words. I perceive "twisting words" as an intentional act (usually either for malicious reasons, but sometimes for making a humourous point - in which case I always use a smiley face to show I am being cheeky). I am glad when you are able to raise concerns with me. 😊

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@Flutterbug9 wrote:

Will the trial involving you being in a day ward at a hospital?

if yes, will you be taking any comfort item/s with you?

if yes, do you know as yet will it be equalivent to an average working day eg 9 to 4 (or similar)

is the trial being done through a hospital or a special clinic? How long before the first day (think you might have told, if so I’ve forgotten)

Do you know when you will receive the first “treatment”?
Any idea whether it will be injection. Infusion or oral meds?

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Hey @Flutterbug9 , I won't be "admitted" as a day patient, however a local hospital is supporting the trial by way of allowing the psychiatrist to use one of their consult rooms for the treatment. When I met the pdoc the other week it was in the room that we will be using for the trial - it's not a patient bed room, but a clinical interview room with comfortable couches/chairs. Apparently they will be decorating it to make it more homely. I believe I am allowed to bring comfort items if I want, but I haven't asked. I don't know yet if I will be laying on a couch/bed or whether I am on an armchair, like the setup the other week. I will find out these types of things during my next 2 meetings with them over the coming month.

The sessions when I receive medication are estimated to be 8 hours, although it can be longer or shorter based on the effects of the medication. They contact my 'support person' (i.e. the person who must drive me home & spend the next 24 hours with me to supervise me) if the expected pick-up time will be earlier or later. I am expecting to have my first medication dosage late April. I don't recall them saying what the method of medication administration it, but I have only ever read of oral ingestion for this specific medication. I haven't asked because I don't mind what type it is and I won't have a choice.

The trial is organised by a university, but the pdoc assigned to me is working out of the hospital; I know a different pdoc in the trial was doing it out of a private clinic rooms. I think they just use whatever rooms they have access/connections to acquire/book.

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@Flutterbug9 wrote:

how are you feeling now the tapering is over? What differences are you feeling and noticing within yourself?

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There are both 'better' and 'worse' aspects.

I do occasionally still get some physical "brain zaps" but they are not too bad, and usually when I am very sleepy/fatigued. They don't stop me doing anything really though at this milder level. I have been very fortunate with the lack of discontinuation effects.

The "good" is that I have some wider range of emotions - sometimes I can feel a little bit motivated to do something without it feeling like a massive emotional effort.

The "bad" is also that I have some wider range of emotions - namely, a lot less frustration tolerance and much more frequent meltdowns, along with a lot more rapid thinking and forgetfulness and difficulty with focus/concentration. However I cannot know if the meltdowns would have been occuring anyway if I was on the medication still; but I think the lack of frustration tolerance combined with a lot of stress currently (busy, applications, paperwork) is the cause. It's a "perfect storm".

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@Flutterbug9 wrote:

Actually feel like I’m missing out on a lot of important medical related things with you. Feels like you have stopped sharing anything medical and trial treated with me.
Oh well, doesn’t matter.

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I don't think I have "stopped sharing anything medical or trail related" with you - or at least, not intentionally. I think I just don't have anything new to share? I did post during the week on my thread about the update once I was confirmed as eligible, and I think I tagged you in that post, but if I didn't - then I do apologise as I understand that could have felt like a rejection.

It does matter to me that you feel this way. I care about you.

As I mentioned the other week, I struggle to "give information" without being asked at times (unless it's something I need to "get off my chest"), which is why I am best with being asked direct questions like you have done just now with the trial. 😊

I am not sure how much I am allowed to share about my experience with the trial. I am not sure how much their methods or process needs to be kept confidential, so I am trying to be general with regard to anything that I think might be expected to not be disclosed (i.e. not publicly available information, not identifying, etc). What I can say is that during the trial (from medication dosage onwards) there are some advice on how people can support me (do's and don't's) when I am reflecting on my experiences. I plan to share these closer to the time (late April) on the thread where I post my reflections/processing of life. 😊

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@Flutterbug9 wrote:

regarding posting links for books, articles, movies in posts addressed to me….. if I want that to happen I will specifically ask for the links, discuss the topic in more details etc. I’m not interested in people making decisions for me, dealt with more than enough of that from relatives in the past

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Thank you for letting me know. 😊. I will try to remember not to do this for this, even with the explicit "ignore if you don't want this" reminder. I'm sorry if you felt that my posting links that I found helpful to me lately was "people making decisions" for you. That wasn't my intent; in fact the complete opposite. Knowledge is the gateway to being able to make our own informed decisions 😊. I'm sorry that your relatives in the past have made decisions on your behalf, I imagine that could be very hurtful and disempowering.

I am confused because a few days before this post I quote above you thanked me for the list of links. I am wondering if something changed between the "idea of the links" and after looking at the links? 🤔

I don't understand this 180-degree change.

@Flutterbug9 yeah I find it strange that people can happily converse in a busy pub or restaurant without needing to basically lean across the table with my ear next to their face! Or I have to stare at their mouth to try to also read their lips... 😅

Also things like... what do you mean you can't hear the fridge, electronics, and various city-sounds at all times? It's why I often need to listen to music to really concentrate.

Take your time re: making the thread. You could make a generic/invitational first post, then reply to yourself with your interests. I think one of the benefits of a space like this is that if people don't want to read something, they likely won't, but they also won't get upset or indicate that they're 'bored' by what is shared - so it could certainly be a good opportunity to practice not self-editing.

Very interesting to have these memories coming back! Especially such young ones, could be very helpful to talk about during assessment. I loved animals too (still do!) - I'd get upset if we couldn't watch David Attenborough documentaries. I also had lots of stuffed animals, quite the collection, and kept them long after it was "age-appropriate". I now regret that I no longer have the vast majority of them.

I think it's a potential sign that your psych is talking with that kind of language - that she not only is ND herself, but has already decided that you are too. One would and could hope that she would be a great support and provide useful, non-stigmatising summaries for the assessment, if you choose to take her up on the offer.

I hope you've been able to dwell in your safe space after having your afternoon hijacked!! 💜