Well it got worse- but now I have a handy what is fibro like example

Oh yes- stability of my computers the answers are coming in slowly as more people ask for help, I worry the next update will be worse- so I’m using this dinky drive that is rock solid even though it’s probably more than a decade old. Most of my drives prior to 2021 are actually, they really are. But the demolition of next door began suddenly and *right now* of all times so that the noise and vibration and shaking of the house for more than a week left me just staring at my drives yesterday and couldn’t remember what was on what. You have no idea how many times I’ve tried to write this single paragraph. But the process to denude the property of all plant life means chainsawing through at least one trunk more than a meter wide, use of a digger to drag said trunk around, digger used to scrape smaller vegetation, and the chipping machine on for hours at a time. Oh and that trunk? From a probably 9m palm that was felled in one go. Yes they got the angle right but bloody hell it was tall enough to land on me at my desk, or in bed, or the garage.

However. I have said before that having fibro is like being next to a demolition and yeah it is. Sure technically you’re not in direct pain from the noise and vibrations and swaying, but it’s constant. It’s relentless. You find other senses starting to kick up a fuss like light.

High-intensity noise exposure activates the sympathetic nervous system and impairs work performance by reducing processing speed while maintaining accuracy. These findings underscore the importance of considering noise not only as an auditory hazard but also as a factor affecting cognitive ergonomics and occupational performance.
https://pmc.ncbi.nlm.nih.gov/articles/PMC12456168/

And more generally:

The combined biochemical and structural evaluation of alterations associated with chronic noise exposure provides important insights into the mechanisms by which this often underestimated environmental stressor contributes to physiological damage. These findings underscore the critical need for effective noise mitigation strategies to protect both mental and physical health. Detailed knowledge of the biological pathways and cellular changes implicated in the pathology of chronic loud noise action could pave the way to further translational research.
https://onlinelibrary.wiley.com/doi/10.1155/bmri/2680036

So, yes, lots to unpack there. But I really can’t focus. At all. And I hurt. Sound doesn’t just funnel into our ears, the waves hit us bodily. And what do you know. I find I tense my body up both with this and with fibro. It can be a sneaky way my fibro gets to the shouting level too.

Anyway. Back to the drives- one did seem to move my files to the bin again, I wish I’d grabbed the timestamps for them because the first time they all had the same stamp. If there were a few minutes between each that would be me. There should be a journal of that yes?

Not that I want to connect any drive at all. Even if the issue is apparently triggered by heavy writing. which. Apparently is defined as 50G or more. Which. What? That will include more than the size of the files themselves but everything that’s written in order to copy/transfer.

So imagine what backing up or reorganising my 3T of mostly research counts as? Apparently I’m not supposed to use my PC like that. Even though this is a custom build for gaming.

So I keep looking up possible firmware updates or conflicts.

Oh it got worse.

The hard drive does seem to be stuck. And worse- if I have it connected with my OS drive? Both my OS and *BIOS* stall. So there is something very badly wrong. For a drive a year old? Okay. So I have the original drives and files I was organising and as much of a mess as it is- the files are intact. Except?

Now the 1TSSD I was working on got wiped. Wiped. No files in the recycle bin or anything. It shouldn’t happen but the big clue is that nothing wound up in the recycle bin and the drive is apparently ready to be a back up again. Lol to the no.

Okay so let’s try again, I attach my 1T external SSD and.

Files erased. Space indicated it was empty.

However, heavenly choir, they were at least in the recycle bin. Neither my recovery apps nor windows could restore them- they just appeared super confused. I had accidentally left that drive as exfat so I think I actually got lucky there. Exfat has no journaling so maybe it confused whatever the heck was going on? I do wonder if it’s related to drivers stored for all drives I’ve attached over the years.

But I can’t trust my laptop either. I took some screenshots of a video to share a new annoying feature on youtube. I chose save as and… both the screen shot and copy vanished. That’s my cloud drive. I tried just cropping a second one. Also disappeared.

Oh but it gets even better. I just started moving cloud to cloud at my PC and a folder full of *photos* had clearly been wiped. The folder structure is there. And I just checked- yes. Storage settings were changed so I think those files got deleted because I hadn’t looked at them in *checks notes* 60 days.

What? Just, what? Yes, because we never need to store our digital life for more than 60 days.

I’ve looked through all the files included in the latest update and there are many that could impact both the HDD (power settings) and my drives (storage settings.) Obviously these were all part of the OS, not something totally new. But I think the settings changed on me. I spotted some that I knew immediately.

So. That’s great. That’s just. Dandy.

I have no idea what in tech the default is irreversible destruction when both individuals and businesses need their data backed up permanently.

The update for sure is responsible for changing settings so I’m hanging out in support fora looking for any clue that this is on the cards for a patch. But I did also find this has been an issue in previous updates- specifically erasing SSDs. Pretty shocking. And that was just August *last year.*

It never rains but it pours

The latest OS update fried my HDD- or rather a little background update it needed. I found the changelog and all files, and I used event viewer and device manager and it all points to power settings- oh and it lost the driver for the PCI controller. The specific change I noticed was a bit weird. On my laptop the changes were more annoying than catastrophic- the app window for the cloud sits underneath the taskbar.

But the power settings for the HDD gets complicated, the noise it makes now trying to spin up could be head parking. And that does seem to be triggered by the wrong power settings especially sleep. And it looks like it’s bad to have them spin down for this exact reason. And yes, turns out my OS did indeed do this.

You know it’s kind of bad when you read these drives aggressively manage power.

I tried a system restore as well and. Well the system completely broke. So I’m using my itty bitty 250G drive to go through my backups. I did make them. They’re just very messy.

I’m pretty shattered by all of this. I have all the updates files but I had finally worked out how to use the Melvil system on my files. I had a little mope wrapped up in the pink and yellow throws Sweet Boo and Little Dude loved, so that helped me draw a line under this.

But, yes, I needed an actual library system that’s how extensive it is. However. All of that work is in my noodle even if I feel like Brutha after memorising the entire library of Ephebe- I keep expecting the Librarian to reach through L-SPace to pat me on the hand, offer me a banana, and ook gently in empathy.

OMG OMG

While editing down my files, and double checking full text for inventory numbers and citations, I have settled on the headdress projects I have been really transfixed by. An extant textile a few centuries too early still explains two examples in North Rhine portraits which in turn are a few decades apart. So far so good. But I’ve missed really obvious example outside the North Rhine but which supports what I think is the flow of influence.

Luckily the North Rhine was pretty stubborn and certainly the classic style of dress and accessories as depicted by Bruyn the elder sticks around to about 1600. This would be the style that feels so very Dutch. But you also get this wave of influence that spans Europe which is the ropa/surcoat over doublet and skirt or over a kirtle.

I’ve got so many portraits that show a connection, or indeed a really fragile connection, but this one was quite unexpected given I already had it to begin with!

I set the experimentation aside in order to preserve my research but this is too cool. Far too cool. I will need another frame. I can’t perfectly work out dimensions because there is a really heavy reliance on stretch here. But I managed it with some crinkly metal tissue so that’s probably my best bet.

But even that is exciting! Because how did people in 16thC North Rhine develop patterns to then make pieces within a commercial level time frame? That is a series of posts to think about I just wanted to share a bit of good news even if cryptic. But I can absolutely fold this into my ICMS paper because of course new information pops up now.

Scope creep

Why yes, yes this has happened. Many, many, years ago on at least one e-list people were being actively discouraged from recreating the gear Anne of Cleves wore for her portrait by Holbein. And the reason was the Rule of Three. Well, an incorrect application of it. That because there weren’t three examples of the same style it wasn’t to be trusted.

At the time there only a handful of readily accessible portraits by Bruyn. But I did have some and made a page for my Frazzled Frau site but that wasn’t good enough because they didn’t include all the elements of her clothing and accessories.

Then through a wonderful exchange with Katherine Barich (yes of Drei Schnittbucher fame) the language of the region was made available and I made a “good enough” document and thought I was done.

In editing my printed out copy with a red pen of doom I realised I was relying on interpretations. So I traced my way back through cited references and realised that so was everyone in that chain.

At least though I was able to follow that chain back as each author used a footnote per term. Where everyone went back to though was a single footnote for multiple terms.

Thus began the scope creep.

I used the manuscript reference numbers to hunt and peck through online archives, through digitised books, and just kept coming up to the same wall.

I also had to keep asking myself if my narrow focus meant I missed more obvious links and shared influences.

Thus the scope creep became entrenched.

But I’ve had to. Because I keep winding up with the same assumptions about sources and I keep wondering what I’ve missed because I don’t think it’s that complicated and more complicated at the same time.

And obviously in that time the quality of digitised records has increased so I have to keep checking in on what’s been digitised, and that’s why I have 1T of files just for the North Rhine.

I mean yes, that’s also because of my damaged harddrives but even that has contributed to scope creep. Take for example a corrupted jpg. It might be the image is corrupted or the file name, rarely both, so I wind up searching by file name for one and reverse image searching for the other. And in doing so I might wind up finding similar files. I can’t pretend they don’t exist. And it’s not just adding another folder of references, sometimes they totally change my curation.

I have a few programs to help with this- automated filename shortening, filename pattern matching, even image comparisons- but oh boy do I wish I could automate so much more of this.

It’s still utterly exhausting playing the Red Queen* game. But also- wow. In doing so I finally have two more direct links between the visual and extant record. Even if they are 100 years apart. The archives are in much the same state or I’d be more hesitant to use them.

* Running ever faster just to stay in the same place.

And the tour of tech fail continues- but

I’ve managed a lot in the last few months- but I’m spending as much time on trying to get file and folder handlers fixed so I can actually do. And it looks like it’s down to what the back up/migration software did as much as the hard drive issues.

Issue 1- the O attribute. So that could be from a time when my download folder was being synced. It’s applied when a file isn’t available on a local machine but the information about the file is. So obviously the O stands for offline and not online. Okay. So then I ran a tiny script to remove that attribute. In explorer? I’ve chosen “Offline Status” for a column. And that shows nothing, but in Dopus the attribute remained on the folder itself and not the files. So weird. My work around has been to go up a few folders and create a new one with no attributes and copy the files and folders choosing to not preserve some attributes and lo. It worked. So the folders with the O attribute go back into my archived section.

Issue 2- file and folder permissions. Now this one is also weird. And these too seem to date to the same month that the O attribute was used on some folders. But I can use Dopus to delete some folders but not rename them. Because rename requires delete permissions… so far so what?? but it also affects the parent folder structure.

Apparently. Even though rename is less destructive than delete. But that’s how explorer is built. To chose/allow the most destructive option. It’s why I’m using Dopus in the first place- explorer will automatically highlight the “replace these files” option with file conflicts. This means that if you accidentally touch any key, have a little twitch on the mouse and they’d be gone. Not even diverted to the recycle bin, gone.

But apparently that’s what ever so many people want even now- when so much of the records of our life are digital. But at least Dopus let me change the actions dragging and dropping a file/folder does to keep all copies renaming the “new” one. Have I wound up with more than 20 copies of some files this way? Yes. But they’re now easy to compare.

Anyway. Yes I’ve done more stuff. It’s just so frustrating as a time waster and frankly stressful. Really stressful.

I need to post about some of the scope creep that has also drawn out and made everything complicated but for now- at least I know and have workarounds. For now.

Phew!

Having stabilised my PC I’ve managed to delve back into my timeline of women of the North Rhine to stabilise and bring together every copy of each file together- to make sure I have the best copies. It’s been so inspiring. But I’m in a mixed state right now and it means I’ve just hit the wall and my brain is saying nope. Take my mouse hand. It’s hot from inflammation to the point I’m now having to rest it.

My infusions and chemDMARDs means I’m susceptible to infections from bog standard bugs in the air. The tiniest nick next to my thumbnail has resulted in hypergranulation and it’s a real risk for infections. I think I’ve managed to knock it back but it’s still drawing a lot of inflammatory and anti-inflammatory molecules to the site and the associated molecules to break down and rebuild. So on the way they’re possibly latching on to markers in my hand.

So taken together when I hit that wall it means I can’t go over it. It’s been popping up quite fast. But on the flip side my tendons and petichiae (capillaritis?) have settled. These had such a profound impact on my health from the obvious (tearing both Achilles meant it took much longer to recover and I kept feeling the same ping from neighbouring fibres breaking under the strain) to the secondary (I needed fairly high doses of steroids for both and while we followed best practice it still messed with cortisol and blood pressure.)

But I’m finally able to walk properly. My hypermobility is back like ridiculously so. Sitting in second on the floor and I can get my head to the floor easy- but I’m back to almost getting my chest to the floor. I can lie down the outside of each leg too- which means my right side is now balanced with my left more.

These are all positives right now and for my future.

But I can’t go back in time to tell myself to not push through. Sadly the fibro Dx means I don’t get trusted that I can tell the difference between the various ways my nerves send incorrect messages and an injury. Oh you can tell. But it also can’t conjure the tell tale bruises. I had assumed the bruises on my calves were just Ye Olde Hypermobility Probably EDS making it easy to bruise from just interacting with the environment. Catching one appear after the last ping was quite the message I needed.

Basically I can’t risk surgery, especially the kind that drills into bone- very high risk of osteomylitis. But I can bounce back from deconditioning- already happening. I might have gone a few weeks over the point it was truly safe but that’s also the only way to make sure it is safe. So I would like to pat my past self on the back for at least sticking to my guns about not pushing my tendon recovery.

Wow. What a month.

I’ve had a series of sad outcomes. But one of them almost takes a lot of pressure off me. You see this week I had to format my ssd and reinstall my OS and vital apps *twice.* There was a set of updates on the same day that I think triggered the straight up crash, but there was an earlier update that seemed to set up an incredibly slow and buggy system. I did the first format and install before a patch came out so that’s why I had to do it all over again just a day later. But. I found the actual drivers I need and have gone through integrity checks and yes. Also no memory leaks from the audio loop. Yep Apparently the creators of my OS decided it’s better for them to rank audio output options that us having to *checks notes* manually select our new device. Yep.

But that ranking means looping through each option them over and over again using up both memory and CPU. My graphics driver has taken that ranking out and now that’s chill. Freeing up memory for my main needs: research. I need to go online and I need to organise that research and I need to write.

Oh and I’m apparently a quadruple “power user” not because I can research errors and find actual fixes and can install programs and edit the back end. Nope. Because an average user is expected to have only 30,000 files to organise. A power user has 400,000. I have nearly 2,000,000.

Yeah. So it means I can’t build a proper index of my files. And for some reason even though I have the space my OS won’t default to three times my RAM (16G) for paging. I have to revisit that info as my brain is a bit itchy after winding up in an endless loop of victim blaming for software issues.

Anyway.

There have been other things to write about but this has been consuming all my enery and frankly time I’d like to use actually researching and making.

This would also be less of an issue had I not managed to buy back to bad drives back to back. My focus had to shift to preserving my archives. I have back ups in different media. But not being able to access them because of OS instability? Really difficult.

Anyway. All of this is context for when I do post about anything else.

Break through

So. Anyone who has gone through tearing their Achilles, knows how difficult recovery is. Now imagine both- how do you walk when you can barely shuffle? It’s ever so much harder with fibro on top of it- no one trusts you so you wind up not trusting yourself.

My RA has done some horrible things to my tendons. From the start it was worse around the outside of my joints than inside- until the erosions kicked in.

RA means I can’t even have HA injections let alone be a candidate for surgery. The concern about deconditioning unfortunately meant I pushed myself a few times and felt the ping of yet another micro tear. It’s not like anything else- I have enough pops and noise from tight tendons, it really isn’t the same.

I was much more conservative in my approach after that and I’m pleased I was. Yes. I need to recondition my muscles all the way up to my quads. But. That’s easy. That’s just commitment. But I’m the one who lives the fallout of pushing too hard. You can look up the kinds of surgery needed to cut out the scarred section. It’s bad enough for one. But it’s both. And I could risk amputation because of the risk of infection.

But I’ve now tested them with my two regular walks (one is very flat the other has a steep uphill section to really give my quads a workout) and an ad hoc walk today. And I can happily say I think I’m finally at the point where work to get back to my usual fitness feels safe. That’s more than two years after my first tear almost two years since my second.

I still need to keep my feet supported. While my RA means an injury gets the full force of my immune system it’s my hypermobility that can trigger the injuries. Let’s put it like this- I would not need those fake insteps you can buy to make your feet super pretty for pointe work. That is how high my instep and arches are, but it creates a kind of instability that can’t be managed entirely through strengthening. My bones are what they are after all.

If you want to stretch the top of your feet you start with putting your toe to the floor then fold your toes so the top of the ends are flat to the floor, then to the big knuckle. I could walk on my feet at that point because they are so flexible. I don’t. Not any more.

Anyway. I’ve regained so much but only by being cautious.

Perfecting Perfectionism

If you know me you’re probably one of two camps one being oh that explains a lot or, more likely, what are you talking about? And yes, this is about my Stickelchen project. Actually. All my projects. There’s a saying that perfectionism is the enemy of good enough. But for me it isn’t. I’ve got plenty of good enough out of my system. No where this all started was in editing a good enough essay and reading that I wrote something like “it’s known” and me asking… is it? By whom? And how can I repeat what I’ve read from this source when I haven’t read their sources? So I started prodding every single archive and every open access source, inter loaned articles. And that is how I started my Stickelchen essay (currently at 17 pages with no inline images.)

I had pretty much every single mss number for every single citation of work published from the 19thC on and yet I still was working with an absence of evidence. I had every section of my essay annotated as “check this.” Because most of the archives were summaries and standardised ones at that. And some of it is wrong. And do you know how scary it is to say “this is wrong?” Because it is.

So each time I disagreed with modern takes I found myself fact checking myself. I could have kept going back to ancient languages, which is where the perfectionism comes in. Each time I thought I could stop I had that same question of myself- am I sure I’ve interpreted this, have I missed context?

And thus the 19 year odyssey to prove myself wrong. I had someone say I could just pretend I didn’t figure out I was sharing the same misconceptions, but I can’t. I actually found it exciting, still do, to unpick this because it’s still a kind of discovery.

But yeah. I could have made a very short essay and published it as “more research is needed.” But I wanted to do that research. I reread my Stickelchen “essay” in hospital to just check in on the style- picking a style is harder than it seems. But that’s what I mean about how the closer to excellence you get the more investment in everything but your content you need.

My essay is good enough. But I want it to be excellent. Especially if I want to be taken seriously with my other papers. They all came out of this really, so it’s super foundational.

Also? I keep finding pockets of newly digitised sources! This last week I found several works to fold into my timeline of images of women of the North Rhine.

I’m having difficulties with file managers. For example Microsoft thinks the average user has 30K files and a “power” user has 400K so their indexer taps out at 1M… chaps- I think you’ll find system files and all the apps make up the bulk of both of these. I filtered out system files and I have about 2M. Some of these are current and old versions of apps. Do you know how long it takes to do multiple malware scans? It’s a lot.

So yes I could have stopped at good enough. But I really am passionate about this.