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]

    

[dollyvee]

Hi NK,

I'm sorry to hear about your f's progress right now. I can imagine, as you said, that if something were to happen it would shift FOO dynamics, and maybe "force" you to be there in a way for your m that you're "supposed" to be. Wishing you the space to realize that you still have choices for you in how you want to approach this dynamic, which puts NK first.

Sending you support,
dolly

[WhatsNext]

  if OK

[Hope67]

Hi NarcKiddo,
I am also sending you hugs     

[NarcKiddo]

Thank you for all the hugs. Much needed and much appreciated. 

My T is back from her holiday, so that has helped a bit.

Our health service is messing up my F's cancer treatment. It was supposed to be starting in the next couple of days but there has been a mix up or a miscommunication or something has not happened that should have done. He's now being told it won't start until December! M is doing her nut. S is getting very worked up about the whole thing too. I'm keeping out of the drama as much as humanly possible while being as supportive and empathic as I can. I wouldn't wish this on anyone but it's not my burden to carry and I'm not going to try.

We are just about to leave on a big cruise. Our first since I got really ill a couple of years ago and we had to cancel. I'm quite scared. I've been on plenty of cruises before with this company, if not this particular ship, so I am clear on what to expect. But my health issues are adding a layer of anxiety. Not in terms of anything actually flaring up unexpectedly. If it does it does. The ship has medics. We have insurance. I am vaccinated to the hilt and as prepared as I can possibly be. But in terms of moving about and going onshore. Getting onboard in the first place is a long walk. I know I can do it if I take it slowly enough but I know it will be hard. Getting off at the end will be even worse because all the luggage gets taken away the night before and you need an overnight bag. We used to take a small case on wheels. H uses a rollator. I would wheel the case. I now can't wheel the case because I need both hands for my sticks. I have a backpack that will fit my stuff in, I think. H will have to balance the case or whatever other bag we use for him on the seat of his rollator. It should be do-able but he is not very careful how he moves and the gangway is sloped and I can just see him letting the case fall off, holding up the queue etc etc. I will have to let that be his problem. I'm used to being the fit, strong, agile one and now I'm not.

And then there's going ashore. H has for some years not bothered due to his mobility difficulties. I've tended to go by myself on an organised excursion or else taken the shuttle bus to town and wandered about. Organised excursions are off the table for me. The ones I would be interested in involve too much walking. The ones for people with limited mobility involve going around on a bus and then being sat down in some tourist trap for a meal and being a sitting duck for whatever they are trying to sell. The excursions cost a bomb so I am not paying for that. All the ports of call are crazy steep so I don't think the shuttle bus to town is an option. So I either take a taxi tour (which H and I might do together on one day) or I get a taxi to take me to a shopping mall where I know there are lifts and the floors are flat and there are plenty of places to rest if I need to. I guess the shopping malls will all be kind of generic but there must be some local shops there.

I'm going to make the best of it and try not to be sad or angry about what I would like to do but can't. I've been researching shopping malls and how to get there and what to tell the taxi drivers so I have options that I feel comfortable with and am not floundering on the day. It doesn't even matter if I don't get off. The ship is the destination for us, mainly, as we have not been on that one before. But if I visit a place I have never been before I do like to at least set foot there.

For the last few years I have been seeking contentment rather than happiness/joy. I think it's healthier. This holiday is weighing on me. It's a big trip. It's expensive. There is H to consider. He has been looking forward to it. He really wants me to enjoy it. I have to pace myself for both of our sakes. Being a people pleaser means I don't pace myself and I get exhausted and push through anyway. Now my body will not permit that any more and it absolutely sucks. Or does it? Maybe I should not be sad about not being able to whip myself into the ground. I haven't even come to terms with it and I don't know how I feel about it. I certainly haven't grieved any of it yet.

My alveoli have always been a substandard workforce. But I used to be able to blow the factory whistle and they would turn up at once and do their job. Then some of them stopped turning up at all. Others would do their level best but they could only do what they could do. Now if I blow the factory whistle nobody comes. They all stay in bed and it feels like I have to go round all of them individually waking them up and drawing their curtains and patting them on the head and giving them a nice cup of tea. And eventually when I have been round all of them they go to work. To be fair to them, they do their best and we sort of manage. It's slow and it's frustrating and I am trying to get used to it.

I'm determined to enjoy my holiday and make the best of it that I can. But I'm allowed to be sad that I can't do some things. My T always says that more than one thing can be true at the same time. She's right but I'm still not all that skilled at holding more than one truth at a time.

I probably won't be around all that much (if at all) over the next couple of weeks. Don't worry if you don't see me!

[Blueberry]

Wishing you a good cruise where you can implement some of what you've described during the trip.

[HannahOne]

NarcKiddo, it's such an adjustment, aging, disability. It sounds like you've really thought it all through and are as prepared as can be. It's a tough adjustment to go from being the "fit one" to not, too.

What came to my mind is wishing you "moderate happiness." I hope the cruise will be so much of what you hope for, and, there's room for sadness too, even on a vacation to paradise.