I’ve been so overwhelmed by my own unfinished projects that it’s taken a fair bit of work to focus. Especially as fibro yesterday took several different approaches to pause it enough to prevent a full week flare. I might have managed it? But I’m about ready to take my glasses off and carefully not prod my eyes.

So I have managed to get both short chemises cut down and partly sewn ready for stitching the collars and waist bands.

I’m using some extant garments and also some images to make these. Where I have deviated from both is a reduction in the material in the back. This is in part due to trying to reduce heat and partly to reduce bulk.

The neckline of my new Cleves wardrobe is a shallow V in the back and wide at the front. So this means the linen undergarments don’t need to be full except where they are exposed. So this is at the front neck and at the wrists.

I’m happy with my reasoning on this, but I really want to actually test drive the idea over the course of an event.

All my linen and support gear is being rebuilt. Again based on a mix of extant garments and imagery, but also text. The documents I have, mostly shared already, tend to be much easier to use to figure out garments made from shell fabrics- wool, silk- with a few garments named after fabric- sarrock- while linen garments are rarely detailed.

This has though been useful in many ways.

But it does mean a bit of guesswork.

So far I’m very sure on a lot, but the “little” chemises could be interpreted in a few ways. “little” is used a lot (“-gin” suffix) but in many ways. Usually for a child, but all over the plac e in garments. And also in jewelry.

So I’m hoping I can pop between my written sources and my own garments, and my pattern book this week when I can.

Resting is frustrating when some parts of me are keen to go, go, go while also being bordeline pain in many others, and then with fatigue as a haze everywhere.

I really have not made much progress on anything this year, very distracted, but today I managed to reorganise my pattern book paper files into a good and straightforward order. The book keeps growing because despite how quickly I can pattern and cut, it did take a very long time to get to that point. And imagine how much I could have done had I just been able to find that all in one place.

So I’m basically writing a book simplifying all stages, allowing for the kinds of compromises we have to make when recreating. So I’m starting with some basics. And all based on engineering. So I’m explaining what a stitch offers and what it is often used for.

I started my own costume making from 19thC construction methods. It’s actually really handy, but it’s really quite different from modern pattern making and construction that I have often been perplexed by a lot of reenactment/recreation terminology. So I’m not just trying to write something that could have been written in the 16thC, but to not skip over 500 years while also not over complicating things.

I am having a bit of difficulty in making sure my work is inclusive, so accessibility is a big deal- alt text yes, making sure that makes sense is a very different thing when being very specific for pattern drafting. But my text is also meant to describe what is in the image so I’m trying to not double up on text reader work. So that mostly means doing a bit more research on how technical manuals and geometry books do this. And of course also looking up reviews.

I also have built all my patterns on me. I happen to be a really close match to some extant garments but that mostly means I don’t have to do much in terms of proportion. But again, I have all the tailoring books, all the extant garment patterns I can get, and all the paintings of different people in the same fashion.

So that has also changed how I treat my construction notes.

But both RA and Fibro are Doing A Thing. My joints are very stretchy in some directions and none in the other. So my ankles and wrists at night need support so they aren’t overstretched. Which sounds strange right? At night though those joints can be overstretched for longer time than I would choose during the day.

So it’s time to apply heat!

Many years ago, when the internet was still a fairly quiet place of free sites on geocities (oh yes) and e-lists that turned into groups, I joined up to many SCA and renaissance costuming groups.

I had not known of local groups until I joined the online global groups- so I didn’t have any rules as stated or traditions handed down and across. So I didn’t know about the rule of three that was used by a lot of reenactment groups.

The rule of three is that you can’t use a source if there isn’t two other sources to back it up.

Me? I thought the entire B. Bruyn oevre was enough. But not according to the most strident application of it. All the features can be found separately over several hundred images, but not all in one garment.

But then I started to think about it. And I realised all of my images were from Cologne. The number of depictions of dress from the Duchy was and is extremely limited.

And so here I am writing up a long form article about a few sources and how trustworthy they are. It’s really quite fun. But is also the end result of reading archives, constantly checking if there are updates, trying to find the best quality etc.

But it’s great, and inspiring. My own Cleves wardrobe is being entirely overhauled to reflect this, and I really need to do this written work as when ever I have worn my frocks and had questions asked I have had to hunt and peck for the info across all my several thousand documents. Which is not ideal.

Today I need to tidy all of that up. And I may have to switch out some projects in storage so I can see them.

And I need to decide what to do with my startling orange frock. I love it, but it is inspired by plain line art and some late 16thC personal costume books. Yes of the region, and there is again evidence across multiple disciplines.

And I think I have evidence of the differences in styles- but I’m not sure.

So, back to it!

Oh, but I have other reasons to centre all of this on Anne, one of which is figuring out what illness she dealt with. I’m still collecting all scraps of information during the annulment process, but I seem to recall cycles of relapse of fever and pain.

It comes across a lot like inflammatory polyarthritis. So I’m collecting the information as to when she was visited by doctors and what they prescribed, and so I have a digital collection of medical books to reference.

I am very interested in the history of Rehumatoid Disease though it is very stressful reading it. One of the idiosyncrasies of medicine is the first to describe a disease names it. So we are stuck with a term that is fairly meaningless and also carries the baggage of the past with it.

A better term would describe the tissues targeted (synovium) and the systemic affects.

So if I can work from what Anne was prescribed I can look at what that was prescried for. There were very similar practices then despite the centuries between us.

Heating or cooling plasters? Fever reduction? It is quite confronting reading further than that but if someone is prescribed cooling treatmeants over multiple joints it’s not diagnostic but it is quite indicative.

RA was first described as a disease of destitute women early 1800s. So prior to that, and even a little after, it could have been obscured by other diagnosis. And the term gout was applied to a lot of conditions that may or may not be what we would call gout today.

Some artists depicted what might be classic deformities, but that might also be artistic style.

I haven’t yet found any history that takes into consideration the prevalence in cis women. And how that might be obscured by the health issues faced by the majority of child bearing people throughout history. And today.

Anne died in her 40s. This would not be remarkable, except she essentially remained single for her entire life. She did not have to face the risk to her health that most of her peers did. And so yes I think we can take that into consideration given that even in my lifetime my life expectancy has started to match the general population- entirely due to access to biological therapies.

So it’s a little stressful reading medical records and history and theories on the etiology of RA. And especially given that my own RA is particularly triggered by physical activity. So today my joints from elbows to fingers are hot and swollen from what I did yesterday, making it hard to use my mouse and keyboard.

In fact

I went from being able to type with both hand to just my right during that last paragraph.

So I’m also interested in any possible therapy in those medical books as I do use heating and cooling topical treatments just to relieve symptoms while my specialist only therapy has a chance to work in the background.

But yes, my RA is very quickly set off. Which is why each of us has an individual plan. And for me heat and splinting are my go to in a relapse while for others cooling and activity is their go to. I can re-engage in activity once my inflammation is settled, when it is active it is active and it can trigger a cascade of inflammation in joints not directly affected by that initial activity.

I am right now going to have to stop, but I’m confident in what to do, and I can escalate my response (steroids) and also be confident that it is a phase. I know what to do. And my infusion being delayed by a week is okay. I do need to ring to advise my test came back negative, as did everyone in that casual contact chain.

Okay, to the steroids!

So, a few nights ago I needed some serious distraction. And I wound up reorganising my Wall of WIPs. My Bubble Frock is in three clear storage boxes, the sequined fabric for the horizontal feature in its own, and I might just get a few more as they look just so much better than the lidded ones. In general one frock fits per cube, unless the trimming is OTT. Or has hoops of doom etc.

And it’s also easy to find at a glance what is in where.

I did it in part so I could figure out what I can do to get my Juelich-Kleve-Berg wardrobe sorted along with the documentation of it.

And I have to keep myself from being too excited.

So yes. More clear cubes, and I have a few exiting pages to put on my other site.

I have a number of draft posts on serious subjects that I have simply not felt fit for publishing.

One of the downsides of trying to write something serious is that I wind up spending a week on something I don’t think is ready, but it’s so very important that I keep trying.

But I have my pearlwork in the lounge, reminding me of why I undid all that work, but also a reminder of how much I need to do. My skin is so sensitive to needles that I have had to think about the project in 10cm lengths. Even that might be pushing it. But I also have more pliers that should help.

So I should take a rest and try to plan for the week.

I’m waiting on some brass findings and some faux enamel to paint them. I need to time my day in the Studio as it takes a bit of effort to get into and out of it. But I do really like my new line art for the patterns, and the next step is to illustrate the fitting process. It’s the single hardest thing to describe as it’s the opposite to how patterning/draping/fitting as was established in the 1910s, and fully embraced in the 1920s.

So that means we are several generations from a fitting practice that varied with fashion but ultimately used the same principles.

And it means often training that includes historical costume, there are modern fitting “tells.”

So I need to illustrate that and in doing so it takes my book from being grounded in the style of the original books further into the 19thC books that illustrated stitches, and trimmings, and hem facings.

So that’s starting to overwhelm me. All my projects are overwhelming. And it’s still a bit risky for me to leave the house to try and get the last of the netting I desperately need for the Frock of Doom.

Currently working on very small parts of projects.

I have had to make a break of most social media. The anger directed at disabled and/or chronically ill people like me has just been like nothing I have ever experienced. Often we can go to support communities, but the people angry at us use those spaces as well, and specifically to share their anger, not to learn.

And of course anyone who isn’t exposed to that finds it really hard to understand how very traumatic it is, even people “just asking” or positing thought experiments on how disability is a burden to others.

If burden is a word you are primed to hear/read because it means you, it adds up.

Many of us live utterly afraid of losing personal connections by being remembered of as part of that burdensome community. That every kindness, or help, or support will be tainted and a backload of resentment will spill out. Because it does happen.

Often we can reach a point in when we feel that compassion is running out, based on past experiences, and it’s only a matter of a few wrong words before it happens again.

So why is this year making that ever so tense?

An entire year being told in every way imaginable (and to most people unimaginable) that me and people like me should just hurry up and die so everyone else can get back to normal. There has simply been no response that hasn’t either directly lead to people like me dying, or rejected by the public because it didn’t.

The effort it takes to keep believing I’m worth saving, that my life has value, that I deserve every chance to stay alive is exacts so much of a toll.

People often tell me they can’t imagine living like I do, and that is not a compliment. It hurts.

I’ve had (refractive: resistant) Rheumatoid Disease for more than 19 years now. It took 12 years (coming up to that anniversary too) of “step therapy” (fail first) to be able to get access to Rituximab- the first monoclonal antibody approved.

Most therapy is self administered. Be it a daily or weekly pill, or even a weekly or fortnightly injection (thank goodness for auto injectors, I mean.. with so much bone loss in my hands….) And then therapy to support that long term use.

But mAbs have to be administered by a specially trained medical team. My scripts show ~$NZ1000/w for all the biologics I’ve had access to. Which is you know, a lot. So we tend to do day stay with as many other patients as can safely be in one room. Haem ward usually.

You get a loading dose of antihistamines, paracetamol, and steroids. You get a saline flush at the end. Blood pressure tends to drop quite alarmingly, so I do what I normally never do and have tea with sugar, and/or I pack a supplementary drink.

One of the things about tricking the immune system? It can learn, and it can wind up recognising the foreign biological material for what it is. So I am on Leflunomide to slow down my immune system. Auto-immune disorders do not indicate a “weak” immune system, they are quite the opposite.

All of which is to say, this is complicated. But it is worth it. Cure? No. Quality of life? Fewer side effects? Yes.

If I really believed current interest would make the therapy cheaper and and easier to get I would be celebrating. I know for a fact I would not have had the damage I have if I had early access. So myself, and people a generation before me? We want better for newly diagnosed people, we do not want people to go through what we have. We want that early access, we want people to have their very best chance.

But this pandemic has caused global shortages. Not always directly (Plaquenil) but also due to reduced air freight, redirection of manufacture…

I will be getting my infusion this week, and then 14 days later. I really need them, and am feeling very grateful and lucky to not be moved to a biosimilar (my poor track record means this is probably my absolute best chance.) I’m also currently in a spiral of RA and Fibro- the RA means I have maybe an hour or two every day or two in which I can tidy, or organise, and maybe once or twice a fortnight I can iron and pin fabric.

The infusions do not fix me. But they give me much needed hope, and a little wiggle room to not spend so many hours a day in bed.

It’s also looking more and more like fibro has an immunological cause. Having spent a few years in the fibro zone, and nearly two decades of clear cut auto immune stuff? This is not a comfort. I do hold hope that it means my infusions have a double effect, I really hope so. But it was slightly easier to deal with as an end result of over stimulation of pain receptors.