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

Hey there @AlwaysMyself just lost my massive post to you, it vanished. Phone reception is also very patchy so sorry for delay in replies!

I will try again later re another post but I wanted to say that I cannot tell you how happy I was to see your tags, what an awesome surprise it’s really good to see you my friend, I have missed you and have been thinking of you since you left. So lovely to see you around x 🌻

Ack, that sounds quite a mixed ride for you lately @Flutterbug9 .

I'm sorry to hear the psychologist didn't work out and wasn't being responsive to letting you direct the topic of the sessions on what you needed most at the time/session. But I'm proud of you for raising these issues with them to see whether or not they could meet your need and then close it off if they couldn't (because I'm still working on this skill, so I'm proud of and encouraged by those who can!).

I'm glad the RFA gave some relief, but also hearing you about how you now feel pain in another part of your spine instead. Thats not at all nice to feel. I hope there is some type of treatment or pain relief they may be able to give for that section also now that you're aware of the pain. I've sometimes only realised how much pain a second part of my body is in after the other more-painful part has been relieved - not sure whether this is similar to what's happened for you, or if this other pain has developed since the RFA treatment?

I recall you had shoulder / rotator cuff investigations and some then-upcoming treatment. How did it go? Is the shoulder feeling better or still painful? (I dont know what the expected timeline for repair/healing was, sorry.)

I'm glad the pdoc has continued to be good. I can understand the anxiety between sending an email with vulnerable topics and waiting for their reply, not knowing what they will say or how they will react. I feel that limbo when it happens for me!

In the past when I had psychs who let me send emails between sessions, they would hold the email to then discuss during our next session.

I'm wondering whether you normally hear back from pdoc quickly with these types of emails? Or perhaps they may be holding it until the next booked appt to discuss?

I like your question about whether the changes feel real @Flutterbug9 .

It doesn't feel unreal-distant like dissociation does, but it can at times feel unbelievable in a mindblowing unexpectedness way. However i do suspect some of the effects of the dosage are wearing off (in terms of the neurological alterations), but it also brought me out of (what I've come to learn was) the nervous system collapsed state and that effect remains - which is a roller-coaster and I'm learning what sets different things off and how to ride it. My counsellor is really helpful with this. I even had to learn how to "ride" feelings of excitement or positive-anticipation because they are new to me and felt uncomfortable.

Returning to work has been really hard, but I am hopeful that its now going to get easier. The people I work with are great people and my boss is very understanding and fine with my decreased ability (compared to past years when she's worked with me). My ADHD symptoms had been making it really hard to work - focus, memory, feeling "lost" about what to do - and that led to an anxiety-breakdown about it a few weeks ago. I'd also been finding the office environment very difficult from a sensory-overwhelm perspective (noise, lighting, social overstimulation) which often led to "crashing" for hours after my half-day of work.

However with the ADHD meds, once we have the right dosage and pattern figured out, I am hopeful that things will improve. I have been able to focus at work so much better this past week whilst on the meds, which has in turn reduced the overwhelming anxiety being triggered. And when the meds are in-effect my mood also lifts - similar to my mood lift after my other treatment dosage which I think has worn off - but seems to disappear again once the meds have worn off.

When the meds wear off I have been having terrible fatigue and mood for many hours after - but this i hope will resolve when we find the right dosage. I have a few other mild side-effects with the meds too, but hopefully they will disappear as my body adjusts. And if it doesn't, then we try one of the other version of it - there is one version we're quite sure will work well, but they recommend trying this one first as it can be more gentle and easier daily-management for many people.

So i am trying to remember when I feel tired and overwhelmed that once we get my meds "correct" then things can feel more managable. Because now I *know* that its possible for me to feel OK and not just the chronic depressed effortful state I've previously always felt.

Seeing things in retrospect has shown me when things started going off track in regards to the psychologist. I can’t remember exactly when @AlwaysMyself but it would have been at least couple of months prior to my initial psychiatrist appointment that the psychologist offered to write letter to the psychiatrist and bring the draft letter to the next appointment for me to read. I’m realising now the letter/email wasn’t written until the week prior to the psychiatrist appointment ie early June. 9 June the psychologist sent me 3 emails which contained the online assessments which I completed that day. First psychiatrist appointment was 15 June.

during the last week I’ve realised that’s when the “talk about next appointment” was said by the psychologist on a regular basis. Previous psychologist left me feeling very intimidated and scared of her. Never felt like that with the recent psychologist, I was becoming frustrated instead. My nature is frustration when not addressed leads to feelings of anger which results in me speaking up. This psychologist also “opened the door” for me by asking how I felt after the previous appointment. Calmly told her felt like I’d wasted my time and money. Despite assurances given that day that things would improve (including communication with me), following appointment was another waste of time.

start of this week when talking with my GP, my GP said last update that psychologist had sent her was early June. By now I’m wondering if psychologist has had things of her own to deal with which have distracted her from her work. Even if that is the case, it’s not good enough the lack of communication that I’ve had to deal with.

@AlwaysMyself my pain management dr (Dr MK) suspects that the degree of arthritis is my spine has gotten worse since the last scan, which was done about 18mths ago. Last time I saw Dr MK in her rooms she slowly went down both sides of my spine and found various areas that were sore, some I wasn’t aware of). Post RFA review appointment in couple of weeks following which I expect I will be requesting my local GP for referral for new scan.

the way the healing time with the rotator tear was described to me is due to it being a muscle that can’t get access to air, the healing takes a long time. Do anything to cause it to become sore again means I’ve flared up the site and increased the healing time. Shoulder pain atm might also be arthritic inflammation and muscular.

thanks for that info about your experience with psychiatrist. Only time previous I email her was advising of side effects following change in dosage of one of my meds, I got email response very quickly plus phone call the same day. I’m so used to worst case outcomes me system auto jumps onto that road.

Due to cost of other things this year I’m not in financial situation to even think about booking for formal autism and ADHD assessments. Online assessments I’ve done at home for traits for both show high outcomes. Lots of things my system does could be autism and/or ADHD, could also be trauma based. Random thing I’ve remembered …. from young age constantly sorting and putting things into order either numerically, by colour order or by theme.

Crashing, emotional meltdowns and feeling overwhelmed all make perfect sense. Years ago I had 10 weeks away from work following surgery. My GP put me on a gradual return to work to allow my body to adjust. My experience is minor compared to what you have been through. It’s a big thing for anyone to return to work after a long break. Factor in medical conditions and the related challenges, it takes a huge effort to do what you’ve done.

Physically crashing after work makes sense due to the combination of (possibly) physically being tired plus all the exhaustion from the concentration, executive functioning, sensory input etc. good to hear you have an understanding and empathic boss, can make a lot of difference.

it makes sense that positive feelings feel uncomfortable and finding a place for them to sit is challenging. Doing some type of journal about the positive feelings, could that be a benefit? To be able to look back through in xx months from now, to read and feel the differences within yourself between now and then (when “then” is)?

”things feeling real”, “seeing things through someone else’s eyes”. Wording I find I use quite often when comes to describing my past, both positive and negative. Following providing the recent info to the psychiatrist I’m getting snippets of memories of 3 rooms in my childhood home, memories I know are real but feel like I’m seeing through other eyes. I know the snippets are of how the rooms were set up, same time struggling to process/accept that that was my reality at one stage (hope that makes sense).

after almost a week of high 20’s and sunshine today is overcast, raining and mid teens. I don’t like the high temperatures. The rain overnight was quite heavy and lovely to listen to. (Due to an app my GP told me about I listen to rain whilst going to sleep every night now). The drop in temperature today my body isn’t happy about and my mood has dropped. I’m finding I get things done by setting a timer for 5 minutes and take a break when the timer sounds. Today is a day on the couch under a blanket with heat packs on

Yo @AlwaysMyself, here goes my next attempt I hope I do not loose this post! Posts don’t go to drafts anymore so careful on your phone posts disappear if you scroll a bit too quick or click in certain places on the screen. Wwoaah it’s been interesting 🤪🤪.

Of course! I often thought of you wondering how you were travelling and if you were ok. Often. Again so nice to see you back 🤗🫶

Oh yeah the Aus Hobby! Brilliant bird! Not sure if the cockatoo thought it was too brilliant 😜🙈. I googled the white winged choughs! So cool. Good spotting! The pacific baza has amazing colours if you are interested in googling them. Surprisingly a small ish bird compared to eagles etc. They look fierce I expected them to be bigger!

I hear how things have been for you. I am glad the real treatment you found helpful, just like esk-y’s quite helpful right to keep food cool? If I’m on the right path if not forget that 😅. My thoughts on the trial 😉🤔. Annoying you had the nocebo in the trial 🙃 but glad you got the treatment after.

I also hear you feel your nervous system has woken up. Bit brutal right? Think we have lots to chat about if you’re ever interested curious re the window of tolerance. I really like this explanation. Being curious of how my system is and trying to navigate it re high/ low activation.

meds, hear you are early in that. Glad you feel symptoms have reduced. I found regulation so much easier.

is you friend Liz?. I often feel pretty trapped with not being able to talk to my friends or family about any of my stuff but also wanting to body double with well people if that makes sense such an interesting concept. Probably why I found peer support workers here so helpful. Know about mental health but added bonus of the rest. Ps they removed the PSW role since you have been here changed all backwards to moderators. No one has mentioned one change here on the forum so all left in the dark re changes here. If good changes for the forum maybe it would have been broadcasted like all good news is so the psychologically tells me swept under the rug. Anyway can’t chat about as we know so yeah sorry about that. Been a very interesting observation period since January. Still waiting to see the positives re 11 months- however pic upload resolution is so much better and you can copy tag lists probably the only thing I have seen however maybe back of house it’s so much better no idea.

i hear how you are would like to be more open re treatment. If im on the right track it was something my psych suggested however even though the med is on pbs everything else is costly 😜. Also if I’m on the right track you keep going and then tapper off after a while years?

anyway forgot what I have said if it’s off topic lol

Hows your dogs going? How’s the dogo that likes to steal off the bench, scored any more cupcakes recently? lol. You and your mum going along ok?

Also what else have you been up to? What do you like to do for fun 😊

So lovely to re connect thanks so much for the tag as always 🌻

@Flutterbug9

That is a real let-down by the psychologist to not follow-through with the letter to the psychiatrist with time to review it with them. I also find communication and clear expectations on timeframes to be important (including if they haven't been able to do for some reason to be upfront and let me know). I would also find that disappointing.

I've also come to realise that when its someone who is meant to be *a support* that is unreliable or not communicating it makes things feel even worse to me, as they are the people I rely on (esp paid ones!).

Socially I find it hard when people mention a timeframe and I don't know if they mean it literally or not. Means I don't know what to expect or if I can follow-up if I haven't heard back at that time.

I'm glad you spoke up. And I hope (for other patients sake) they also reflect on the feedback and can see ways to improve their communication.

Fingers crossed for the continued rotator cuff tear healing and reducing pain.

I'm sorry to hear the arthritis may be getting worse; you have my care and hugs.

So good to hear the pdoc followed up same-day when you contacted them about meds side effects. That's fantastic!

I guess I shall see how long it takes for my doc's clinic to reply, as I sent them an email this evening about a side-effect I'm having.

Very understandable re: affordability of autism & adhd assessment. I know many in that situation also. Thankfully many of the adjustments to life that can help are available regardless of formal diagnosis or not, and can see which things do or dont help. Sadly ADHD medications aren't in that category though, but not everyone with ADHD wants or needs them and can just use systems or adaptations to help instead.

Its interesting what you're noticing about the memories and how they seem like through another's eyes. My memories aren't very visual, so it's hard to say how it is for me.

I found last week too warm for me in the high 20's, and much preferred today's lower temperature and yesterday's storm.

“If plans need to change, let me know. I can’t understand if you don’t explain things to me”. I hear you @AlwaysMyself

I have no concept of “later”. When people say or write “talk later” etc I struggle with the when aspect ie today, tomorrow, next week etc. Assurances given and nothing changes becomes a trigger for me and creates instant mental time travel to decades ago.

to me, in general it’s rude to assure someone you will do something and then fail to do so.

if no response to my 1st email by this time next week I’ll be sending 2nd email, emails being addressed to the psychologist plus the company director (who is a psychologist). 2nd email with give them timeline of 2 more weeks to respond and will state I’ll be lodging complaint with HCC if no response.

My physio gave me the go ahead to return to doing cross stitch, think I might have been doing too much recently. No cross stitch yesterday, some anti inflammatory meds, heat pack and shoulder pain massively reduced today. RFAs have been for L3 to S1 bilateral both times. Getting pain on left side T12 to L2 region. End of January I’ll be in hospital for week of pain med infusion. Possibility of next RFA early next year.

due to things I know I do, remarks by others for years plus various things the psychologist remarked on within first few months of seeing her, I’d like to have answers (if only for my own knowledge). There are things I do that work for and help me that I know most people don’t do. I know I have various autism and adhd traits. I was reading recently about GPs in NSW being able to do the assessments with people having only few hundred out of pocket. It’s a shame that option is not available in all states.

prior to my late teens there are lots of gaps in my memories. With variety of things I can’t differentiate if they are actually my memories or things I was told that my mind now reads as memories. With lots of my memories of those years I can recall what happened but doesn’t feel like it was me going through what happened. In the mental health world it’s mentioned how the mind does things to try to protect the brain from damage due to trauma.

how are your dogs? Still living the life of luxury and running the house? 😆😆 how are you and your mum getting along? I remember you mentioning about working from home one day and one day in the office, is that still happening? Was you new treatment a one off or does it involve ongoing meds etc?

heavy rainstorm yesterday evening was lovely to listen to. Neither myself or the cats appreciated the thunder though. Single figures overnight here made this morning quite chilly. Tonight is another evening of having a jumper on, much preferred that the heat