Miscellaneous ramblings of NarcKiddo

[Hope67]

Hi NarcKiddo,
I wanted to sit beside you and commiserate about the things you mentioned here - but I also wanted to congratulate you on all the preparation, gathering information, asking questions, and generally advocating for yourself, as that takes a lot to do that - and I think you did it really well.  I'm glad there were some things you can work on with your coach, even thought those may seem small, hopefully they will be beneficial.  Sending you a hug of support 

[HannahOne]

NarcKiddo, reading about your cabbage M and pivoting F made me feel sad, as you are worthy of serious consideration, a hearing out, and support. "ask for help and don't get it" is such a CPTSD theme song. I'm so sorry it's playing again in this situation.

I was impressed by how you advocated for yourself, worked through the process, organized and collated a lot of information. No cabbage/pivot there. You parented yourself through the whole thing.

 And you're already organizing around what you can do next, even if that means just keep doing what you're doing, process this information, and accepting. I hope you do get to process with your T and feel whatever feelings kid and teenNK, and adult NK may have. All the feels are valid and certainly make sense in this situation. I wish there had been a clear answer at the end of all of this that could improve your situation, and I'm sorry it didn't turn out that way.  It sucks.

[dollyvee]

The whole experience felt so much like everything else - ask for help and don't get it. Work out what to do yourself. I know that's not entirely fair but that's how it feels emotionally.

I'm sorry it didn't work out NK 

I'm sure there's an answer in there somewhere. Maybe not on that track, but another one out there. For me, I would try and look for past case histories of people with similar reactions if they've had them, and build out from there about methods that worked, whatever they were. Though it's likely you've already done that. 
 

[NarcKiddo]

Thank you, all. 

TW medical stuff and terminal medical stuff (not me!) towards the end.

The written report from the professor was not all that satisfactory. It was not a report for me so much as a report back to the consultant who referred me and a checklist of action points for me. The checklist was not even a proper protocol which is what the professor had promised me so I had to email and request clarification. Seemingly a minor point and he immediately apologised and provided clarification - but for me it was YET ANOTHER thing I had to chase/attend to/do myself.

I'd been feeling bad about the video consultation and the latest medical stuff is making me wonder if I am somehow inarticulate. Why are the medics not understanding what I am saying to them? I even started wondering if maybe I have been dissociating during appointments (entirely possible) and maybe not being clear enough.

However the latest video call came with information beforehand saying it would be transcribed by AI and then the professor would check the transcription. I expected to get the transcription wit the report, but I didn't. So I requested it. There was no problem - I got the transcription by return.

I saw immediately that whatever they said about the professor checking the transcription was nonsense. It was a whole wall of writing, not separated into paragraphs or indicating who was speaking. Absolutely awful. I was expecting better because our financial adviser uses an AI transcriber and anything we get from him is much better presented. Clearly his AI is better because I can see he has not edited it, there are still a few AI howlers.

So I spent time going through the transcription and making it readable and laughing over some of the AI mistakes which were really quite funny. 'cold fires' instead of 'coal fires'. 'cursed lip breathing' instead of 'pursed lip breathing'.

It is now a very useful record for me of exactly what was discussed. I can also see that I did not dissociate - at least not to any sort of non-functional state. I have not retained long term memory of the full contents of the meeting (in fairness I did not take notes as I was expecting the transcript) but for a couple of days after I was sure I said what I wanted to. And I did. I was articulate and I made my points and I asked my questions. So I'm proud of myself for that.

I really do feel it is a situation where the medics are basically trying to help but there isn't anything they can really suggest and they don't want to just tell me to go away because that would be mean. So I just have to come to terms with all of this.

My coach and I revamped my exercise regime today and it feels good to be doing something that feels like proper exercise even if it is way below what I used to be able to do. One of the annoying side effects is that I space out. It's like being in a VR headset and puts me slightly off balance. If I allow the breathing to get too laboured it all progresses nastily. So as a warning sign it is good. Unfortunately in order to try to improve I have to push at the boundary. I am not convinced it will work all that well because I spent two months doing that with my walking to no avail. But it's all I have left to try [again] and the professor said I should. But pushing the boundary means I space out and also provoke the other symptoms. If they just happened during the exercise session it would be one thing, but when I have seriously breached a boundary I stay spaced out for a couple of hours. I will give it a fair trial but I'm not sure how I will feel if things do not improve at least a bit.

In other news my F's cancer has spread all over the place. They're putting him on chemo to see if they can slow it but from what I can tell he may be trading quality of life for not much quantity. Right now he feels well - this was picked up on a surveillance scan. But who's to say what will happen when he starts the chemo? He tolerated it reasonably well last time but he's 3 years older and much frailer this time. FOO dynamics go absolutely ape every time we have a setback and this is a huge one - so I am putting on my tin hat and hoping for the best. While, of course, trying to keep space for my own health worries which are not insignificant just because they are not terminal.

I need hugs!

[Luma1123]

Big, big hugs. It's wonderful that you were able to get a useable record out of that appointment, even going back and having to correct all the AI errors! I find that editing can actually help a lot with memory and review (though my experience here is more from a work/professional perspective). And I'm sorry your F is going through that. It's hard to go through and hard to watch, for all the expected and different reasons. My GF had something similar going on in his last few years, it was really rough. Big, big hugs.

[HannahOne]

NarcKiddo, I was very sorry to read that your dad's cancer has spread and feeling the stress this will place on the family system and on your system. 

I can relate to wondering what's going on, was it you, was it them, did you dissociate or are they unclear? For me that self-questioning is part of a trauma response. I'm glad you had the transcript.

[Blueberry]