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.

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.

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.

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.

So. I’m now on triple therapy for my RA. And it really brought home my reality. Best results for people with RA are the biologics. They not only work better on the A part of RA but more than that are the only treatments to save our lives. Oh yeah, prior to biologics our life expectancy plummets because RA attacks our hearts long before erosion of joints (heck that might even be true for me even though I had an acute onset.) But biologics by their nature (being biochemicals) wind up triggering our IS into getting rid of them. So we still rely on what amounts to low dose but continual chemotherapy to protect them.

But I’ve been getting so much break through inflammation and needing steroids that I’m now on two chemDARDs to support my biologic. One of which might contribute to neuropathy (but I asked my Rheumatologist and it seems unlikely- thank goodness) and the other will mean I have to have my eyes checked frequently.

My feet broke out in even more capillaritis/purpura and I thought it was worse.. but! I might be lucky that like the other two forms of skin involvement I’ve had that it seems to move in a wave- so new inflammation which is bad but previous injury seems to heal. The blood vessels near my toes do seem to have healed anyway.

And my wrists aren’t looking great. My ulnar has deviated further- I’m having a bit of a break from my embroidery because I know from- mumblty- years of living with this that injury or overuse will trigger inflammation. Yay for refractive disease.

Anyway. We’re not giving up is the point of this.

(Callback Lord Flashheart.) I’ve *finally* consolidated my edited files for my costumes. It was more difficult than it should have been. I have not yet folded back in all the resized photos I used for earlier versions of this site when data was so very expensive in hosting but also for visitors. But it’s finally paying off. It’s been so overwhelming at times that I’ve been not taking the time to really appreciate each photo for the record of my progress, or those I love, because it is just so very much. Going costume by costume though makes it easier for those moments of joy.

I have up to 20 copies of some files. Some of which were recovered so have errors, some of which were copied directly from corrupt drives- the very last action I’ve taken on them yes. And you’d think there would be some easy way to figure them out. But there isn’t. And this is yet another example of how I as a puny human with munched up hands, with fatigue an pain, can process these files faster than any software currently available.

No, I literally can scroll and sort and search so fast that my software can’t keep up. And my PC has a hard working graphics card, all memory slots.

I need to edit and publish a post on how bad it’s become trying to search for what I need to- but I’m not a fan of AI. I’ve seen it used to repeat tropes about Anne of Cleves- when you are very familiar with not just the sources but the quality of records of them? It’s painfully obvious. But that’s not the position of most of us. Also at least one of my images has had this treatment so it’s a handy easy way for me to reconstruct how it was altered. It’s so bad.

But I’ve also been tackling fibro grinding down on me- I do want to make a post about that as I’ve gone through quite a journey but found some tools again. Not perfect, but it’s giving me a bit more time and focus.

So this is a summary of what I’ve been trying to write about and just not having the spoons to do so. Spoon theory has had some really interesting expansions that work better for me than the original- which fair enough was very good to describe how rapidly fatigue sets in.

Anyway. I’m got my folders starting to be easier to navigate, uses fewer spoons, and so it means I’m able to really focus on what I really want to work on over the next few years. I need to restore some costumes, actually finish others. Tearing both Achilles tendons has been so disruptive. So disruptive, but now that I’m feeling real progress I want to write about that- now that the coda will end on a positive note.

And I keep going through working on my sites so I can do some major content updates/upgrades.

Twenty two years of digital photos taken by me, by my friends, by my family, by my communities means a heck of a lot of shared file names. Unfortunately for much of that time we were very limited by numbers of characters so best practice of using a timestamp just wasn’t default. And then on top of that I wound up getting to 9999 photos within three years and so my camera just… went back to 1. Not even with a new character at the end of the prefix, which it really should have.

And oh boy does my OS hate sorting by date let alone date taken, but loves date created. Which really means date copied but it uses the same convention for all files. But that date created can also mean date copied to a different drive. Which, again, means it really should be date copied.

And a lot of photos have had exif data removed anyway. And with my OS making it incredibly easy to overwrite (not even delete so you can find them in the bin, nope, overwritten) by automatically selecting that *and* making that window come to the front, *and* any key as enter, but then making it more tricky to keep all versions of a file. Those ticky boxes are tiny, again, compared with the ease of totally destroying files it makes it overwhelming to just move files.

The weird thing is when I look into ways to change the default action? The top results are users who do not want to follow best practice which is always least destructive. So that’s probably why there are no options, but I doubt they reflect what most people actually need given they are people with logins on these forums.

I don’t do that, because I expect most of these answers to be in online user guides to be honest.

So I started looking into programs that could automate some of this for me. But. Even if I can find one that can search by image properties, exif data yes but by pixel, and they too default to destruction as your primary use. It’s really hard to find one that can do that and let you select what folder they should all go into and let you keep all copies with renaming.

Heck I want to add a suffix with the dimensions to the files that are no longer full sized (that’s on me and my early use and much smaller harddrives) and there are some programs that can do that.

So at this point I’m still faster than tech. Because I have my memories to recognise what dates a lot of these photos should have. But I’m also so much faster in my research files. And if you add in time to learn and configure those programs, I’m still faster.

Anyway. I’m pretty exhausted, I keep wanting to post because all those years of memories has really made me want to write about them. But I’m physically just wiped.

But wanting to make sure I have credit for photos taken by other people is a big driver. Even when I’ve had permission to use them, I want to update all my links to follow best practice- I’m trying to live up to the same kinds of expectations I have for tech companies yes.

Trying to not feel sorry for myself! Opportunities are coming up but the utter shambles left behind from me losing earlier ones means I’m scared to pursue these new opportunities. If I’m honest though I just had one of the worst health crashes in recent years. By tearing both achilles tendons- and winding up having EDS finally in my record as a likely contributor- I wasn’t able to properly calculate how to recover ort plan. Injuring one was fairly easy- I could still walk but carefully. Both? My entire general health has just collapsed.

I can finally safely walk around the house. When I do heel raises I can feel two things at once. One is the obvious- loss of tone. That’s fine. That’s just being persistent. But I can also feel the same kind of sharp pulling that indicated pushing too hard and reinjuring myself. It’s also been a cold winter, so warming up muscles before stretching/moving has meant something else.

RA is a bit like having an an acute injury but also like disorganised healing all at once. For me ice makes my hands so much worse, but heat helps. I suspect it works because heat dilates small blood vessels and so inflammatory molecules get flushed out. Ice contracts those same vessels preventing inflammatory molecules getting in. And with the petechiae in my feet responding to oral prednisone and the high likelihood of having EDS that makes blood vessels fragile? I think that’s why for me heat helps even when my hands are hot.

Ice on my tendons whenever I retriggered the injuries did make a difference. So it may also be that whole disorganised healing issue: there aren’t just one set of inflammatory molecules. In RA it’s like an injury yes, but also like an infection. Either way I’m just glad I actually noticed the difference.

It’s hard to recover/maintain health with chronic processes, which is anything lasting more than 3m which is wild to me as someone with … well.. many years of both RA and fibro. But it’s made easier if you have a treatment plan.

I’m also missing Carlo so much. IG and my phone both remember the #SpottyCatsOfInstagram tag I used for him, and when I tag Fluffy and Missy it comes up. My heart breaks every time. I used a few tags for Boo that seem to no longer be recognised as frequently used. And that’s hard too.

I’m genuinely consolidating my research though. Which is where these opportunities come in. Three of my papers could fit in two conferences. But I’m scared. Both my tendons and petechiae rely on prednisone, actually my fibro does as well, and it messes with natural cortisol responses to stress.

And I can’t just avoid the stuff because what happens externally might also be internally.

It really messes with you when you fail other people. Failing myself pales in comparison.