The Frock Chick

I have 3 monthly blood tests and last week my blood tests all came back bad. Oh no, the stuff I’m personally in control of is actually making me smile. Hello yes, I’ll take nicely shaped red blood cells holding tightly to haem as a very very very VERY good thing. I couldn’t work our why I’m still so exhausted though until I saw my CRP had leapt to 9 along with a leap in white blood cells. So that’s an infection.

Problem is?

I develop walking pneumonia so often that I can’t tell when it happens.

And it’s happened a number of times.

The same is true for new pain.

And I have to accept that actually, we’re not on top of my pain.

My RA didn’t protect me from Fibro, and neither have protected me from Carpel Tunnel Syndrome.

RA is “known” to not affect the spine- usually blood markers and expression of erosion differentiates between RA and AS.

But.

It doesn’t protect me from other forms of erosion.

And I have a little compression in my lower spine.

Right where I experience pain that doesn’t fit my RA or fibro experience.

It has left me in tears, and I didn’t realise I have held back on saying my pain interferes for most of every day.

It’s extremely hard to bring up pain you think is unrelated because it’s such a short precious time you get with your team that you don’t want to waste their time. We *know* how hard our teams work not just for us but all patients.

Crying from pain is not that common for me considering, but my back pain got me there. It feels like my vertebra have been filed sharp and so those edges are pressing into surrounding tissue.

So I have to summon the courage.

It’s scary.

It really is.

But the extreme numbness in my entire legs I get from the same part of my spine means I really have to ask for help.

I realised my little hook into drafting patterns is really has even more applications to really get into understanding the manuals- including the written only sections. But my book was already heading that way because of how I drew the patterns. It’s always the same though. I take a break and focus on something else and then *poof* epiphany!

Well I spent the last few days thinking I could just make a simple version of the Pink Diamonds costume with what I have in my stash of supplies. But no. The more I worked on restoring lost files (from my previous site) the more it bugged me that I was not going to get the same effect- an effect I did get from my previous version.

My research site does cover film costumes, so I’m going to do a proper write up of how and why this effect works. Because if I can be annoyed out of my sleep several days in a row then I think it’s worthy of a proper home.

I also need to draw the Hindi Wedding Dress information I got by being allowed to see her in person- I was allowed to take photos but I’m not allowed to share them.

But what I have is of enough interest that I’m happy to sketch from my photos, which is a fair bit of work compared to tidying up levels and hue and sharing the photo. My sketches of the embroidery could probably be tidied as well- but they are really pretty accurate as I was able to get photos with a ruler.

But that lovely snuggly tired that you get after doing a lot. I love that feeling. It’s very different to fatigue.

Constant fatigue and pain are never easy to explain, so sometimes it’s easy to explain how much I appreciate it when I have more usual experiences.

I love endorphins. I power walk and often belt out or test my classic training because together it’s a great core workout. I do get what I remember as my default endorphin push. It’s great. I love it. My voice gets better too. My Think of Me actually sounds pretty good atm.

I still have limits to how long I can Do, but the bigger issue it the unfortunate massive fibro flare after.

My skin over every muscle that gets a work out winds up feeling bruised. The muscles mostly send out appropriate signals, but if I gently press my skin it does feel like I’ve pushed into a bruise. And that’s from origin to insertion of the muscle too.

If I brush over the skin it feels like brushing over sun burn.

On the plus side because my fibro really does feel like it’s in, on, under my skin topical NSAIDs have some role. I can’t get them to work on my RA, but for fibro? They help.

I can’t just cover myself with diclofenac every moment of every day obviously. But it feels like it works on me like it would on people without fibro.

So that too helps my stress a bit.

It’s the opposite of a limit, it’s being able to know I can extend in one way a little.

I have been very much in the weeds for a while. Pain and fatigue amplify each other. I’ve been struggling to focus and I went on a tidy spiral where I move my stash to access the projects that are most meaningful. So that’s been using energy and ability.

But I do finally have this close to ideal now. Which means I’ve been having fun helping people online by sharing images that yep, I’ve been tidying and cataloguing in the same way. But it does mean I usually can find those images now.

So I’m also working with a set of 64 images covered in frocks worn by named and unnamed women. There are some amazing examples of striped gowns and oh so many half length sleeves with a single loose layer underneath.

And that’s fantastic because these mostly appear on allegorical/ancient figures, but there are a number of them in portraits. So I’m now able to write up part of my research on the frocks I’ve been making with these with even more examples. And make some little cuffed sleeves to match.

The (ex tropical) cyclone Gabrielle has finally moved off shore, it followed the very strange path predicted. There are still people dealing with the weather, and across the motu (country) the aftermath. The ground is still wet, trees are still shedding branches.

My little area of the world, my tiny suburb, has had some trees ripped out of the ground, leaving sheared of bases of trees well over 2m in diameter. The trees themselves being maybe 20m tall.

Our garage survived, but we’ve lost trees and we really need the ground to dry up to be able to be safe outside. The fear of losing so much of my work was real, it still might happen if the third flooding event in a month leaves trees weakened.

But it has spurred me to be a bit harder on myself to get rid of paper files when I have the digital version and can use my flip book.

I have fabric I can pass on. And having now freed up my embroidery frame I may finally work on my Mon Mothma robes. It’ll be relaxing and progress is quite fast and I don’t need as much of the yarn as I thought I’d need.

But I absolutely need to finish my Historic gowns as well.

To do all this I need to reduce stress and tackle my ever worsening fatigue.

Yesterday I had to take screenshots of a book digitised right at the start of the OCR revolution. I had to do this as the OCR layer is full of errors, and my PC/screen smooths out harsh lines to make it easier for OCR readers to recognise blurry characters.

It’s a bit.. umm.. difficult as we are still not past the effects of flooding. So I’m getting a real time cause and effect of stress on physiological processes.

I now have 256 pages as images in a mix of languages and regiolect and I’m now at the point I can look at them and say to myself: “Yes. These are words. Words of wordiness. That’s an a. That is definitely an a.”

It’s a bit tricky as well as this is what I want. I want transcriptions so I can agree or disagree with translations. But even tidied, formatted… no there is no translation software trained on 12-16thC spelling. And Grammar. Across three languages.

At any other time this is something I can workaround. I use a totally different set of skills and let my mind work subconsciously and consciously on a solution.

Luckily yesterday I was able to lay down another coat of faux-namel on some metal plaques which did let that happen. There is something so very soothing in dipping a brush into paint (well a medium that I mixed with real metal powders) and brushing and smooshing layers down.

But it’s still work. It’s still using my mind, and brain, and spine, and muscles, and skills. Even if it is soothing in the moment I’m here on the other side of the night.

Over time this is progress.

I’ve put each page into a subfolder for each trade and I’m definitely correct about some overlaps I haven’t read about so that’s nifty. If only I could go from “these are words made up of letters” to my usual ability to work out what a sentence means.

Still safe from the flooding, many are not, the long term damage to our roads can’t be underestimated. So much erosion is where the water can get under rigid surfaces, and pool, and flow.

Meanwhile I’m just not concentrating at all. But have also been dealing with some awful pain, from lower back to knee. It felt like neural involvement so I attributed it to fibro for a while. But it followed major nerves rather than feeling like referred so then I did some stretches for Piriformis pain. Oh ouch.

However.

My usual supine spinal twist didn’t go as far as usual, which should have been my main clue as to what was actually going on. So 500mg of Naproxen later and I’m back to being able to stretch. The pain is gone, my back makes the little popping and cracking sounds I’ve become familiar with.

It’s similar to how inflammation affects my jaws and hips. It actually pushes soft tissue out of alignment. For my hip there is a deep U shaped muscle that gets impinged, my lower jaw juts out, and I guess now my lower spine is playing the same game.

I need to renew my scripts so I’ll just ask for all the NSAIDs again as they really do all work differently.

My city is flooded. I’m so, so very, lucky to be on a small plateau so water runs through and off our property but it’s scary because we are on clay- our pipes might now be as okay as appears. We are also on restricted water supply.

I think we’ll be okay through the worst, I’m most concerned about backflow of wastewater as our toilet has fountained a few times.

I had a quick look around our neighbourhood and families are sheltering in our little corner from other parts of the city.