I have lived with a disability caused by an autoimmune disorder for just over 19 years now.

In that time I have have had to shift my expectations at least once a year, sometimes more often. So the term “the new normal” makes me feel a bit uncomfortable.

But when it is presented an idea of as absolute, as a way to start a conversation, it can help.

I also don’t think of myself as homebound. Yes I have 90% of my support at home, the rest is all of the essential staff who help make sure I can get the medical and neccessities I need. And friends and whanau who keep in touch.

My home offers me safety, it offers me stability, and it lets me live my life at a pace I can live at.

I would absolutely benefit from infrastucture that could allow me more access outside my home but I do find the term homebound to be quite harmful.

Especially in a pandemic in which so many people suddently find themselves having to isolate.

My home as a safe haven is not just a happy accident, we have worked hard to make it so. And it’s most certainly not universal that people are safe at home.

What my home offers is shelter. It offers even surfaces, no stairs, my bed, the sofa, my medicines in one place, entertainment, space to stretch and do low stress exercise.

Right now a lot of people in my home city of Tāmaki Makaurau (Auckland) are dealing with another round on restrictions of public interactions.

There are people who cannot stay home, they have no sick days, they have to keep working. There are people for whom home is dangerous.

While my home is safe and supports me I will appreciate it as not a given. That every day I am able to be safe, to be warm, to rest, I will accept and be grateful while not taking it for granted.

One of the downsides of having such a varied interest in everything is that there is a heck of a lot of tidying that needs to be done and there really is not a perfect sysetm for doing so.

I use a lot of Marie Kondo’s method for clothing- my now antique wardrobe and drawers set is very shallow. So cardboard boxes are very effective in there to store socks in a more self contained part, and my splints in another.

But when it comes to storing dresses and armour and storing unfinished projects of very different space needs… it gets a bit tricky.

There is a cube container that is great. But they don’t stack inside each other. But they look great when tidied as they sit flush with a wall and each other.

But yeah that they can’t be stacked inside each other means being absolutely sure and having the right number.

When containers can stack away when not in use they take up less room and you can have some out of rotation.

But I have to admit these are also small enough and light enough to transport. There are handy spaces to stick labels, they are high enough to store books, and I can probably get a nice row of them.

So. Today. I need to move a container to the studio as it is all fabric and projects I have sort of wasted a lot of time on. I feel bad as I could have used that time on my long term projects, but that’s more a statement of how stressed I have been.

And I really need to tidy my notions as they are so messy.

I managed to go for a walk today- silly hips still catch but if I make sure to start walking slowly rather than straight to my habitual faster walk. It takes about 3 min to settle so that’s pretty good.

As part of my walk I got some expanding foam filler so that when I do reshape my Maleficent horns I can ignore the wall thickness and dremel into the fill. I am so excited to be able to focus on my own projects right now that yes this is happening! Wings, one of the two pleated gowns and horn reshaping.

The wings are huge. There are at least 28 large flight feather sections, and as you move up that doubles for the shorter denser feathers. I will probably use the promo images of the first film to decide on the exact number.

I planned to make wings for myself even before the first film, I know exactly how I want to make them to be safe and very light, it’s a matter of scale. If these were not over 2m tall it would be so much easier. But I think I have worked out safety (so no spring loaded wing opening in case that springs at the wrong time) and effect and to make sure making them can be at my pace. So it’s a case of building up materials (including incidentals like replacement cutting blades etc.) and drafting patterns in the meantime.

I am prepping myself to carefully tidy my studio and I’ve got a weird cold sensation that passes up the back of my arms. I think this is fibro as that tends to be where I get the bruised feeling when fibro does that thing.

I’ve also had some worsening of my hand tremors. I think it’s too interrelated between my RA and fibro to figure out, so I am just going to have to continue to use therapy for each.

I think that while the erosion seems to have stabilised (as in it’s all eroded, but it’s staying as eroded, not that the joints are stable) but I think this is related to the twisting my ulnar has done and might continue to do.

Splints are great and also put pressure on the top of my ulnar so typing is a bit difficult.

I have just finished my stint as WorldCon masquerade director. The event is still going so I still need to do a proper debrief so I’ll wait for that.

But while deciding what on earth to wear I settled on Elsa but got Maleficent, my Wishing gown and my Elissa gown out to see what worked on camera.

My Elissa gown is entirely in pieces but they are good pieces. They are fun pieces, if I can just get the courage to put them on.

I love my blended interpretation and my original rope skirt, I’m not keen on how much stitching the ropes would need. though being stretchy it is possible I could overlock them and turn them. Hmm. The originals are just rolled due to the nature of the fabric.

But at 1m each I could just set aside a colour block a day to hand stitch them.

But I also really want to finally make my Maleficent wings. I’ve had much of the materials needed but I need to make a harness and of course one of the gowns.

My horns are very much pre- final battle (yep, they get sharper vertically. So I’d need to settle on how to deal with them. I do want to make them able to be worn more easily- so basically to snap on with magnets and make the space for my hair a bit wider and cleaner.

And I am also very keen to work on other projects. Like my entire Nordrhein wardrobe! My winter frock needs the fur lining put in. It’s basically an entire make over due to needing to take the lining out first.

But that silk can be used to finally line my Valois skirt as I accidentally used the best silk for that in something that has a new home.

So. Today I will reorganise my WIP pile as I probably can make it easier to work on everything.

Health is still up and down, it always will be. But I’m out of the holding pattern I was in caused by stress.

This is actually really difficult! I may have shell fabrics and some decoration ready for all my WIPs but gathering lining, support, interfacings, trim… it’s all been a bit difficult. I’m used to being able to just go to the stores where I can grab low cost but quality natural fibre fabrics but with fibro and my RA together it’s very hard to travel even to places on a nearly direct transport. And then carrying..

But I have just accepted I need my gabapentin during the day as it is actually really effective at night.

Right now the fibro is doing the raw/hot/cold patches thing. And that turns very quickly into flinching.

But I am now very sure what I want to accomplish this year and when.

I’ve spent a little bit of time on a distraction project. I should just finish it but I am not sure I can.

I’m also very busy for this week, so I might be pushing things to even attempt to do so.

Fibro is doing a Thing. I managed to cut some fabric, which well.. it was all over sequin fabric and two layers so yeah that might have contributed to The Thing.

Anyway it’s doing a weird thing where my feet feel like they are pressed against something buzzing and that is zipping up into my spine and down into my elbows and my sense of smell is a bit heightened.

So it’s time for lots of heat directly applied to my back.

That actually is one of the few non-medicine treatments that I find helps. I suspect because it dilate blood vessels. I have low blood pressure which means my extremities get cold, so heat gets blood flowing a bit more freely I think?

It definitely helps me more than ice. Ice only seems to help for fever and during the height of summer. I do indeed use heat even in summer for pain.

Anyway. For some of us heat helps for some of us cold helps.

Today I actualy drafted a pattern. A really simple princess seam (into armscye not shoulder) and it really doesn’t look like anything special because it is familiar.

But it was entirely drafted from a width of curtain lining.

I taught myself how to drape primarily because all the classes and courses available at the time and for a long time after taught a very modern system. Which regardless of what anyone says is not peak evolution of patterning.

One of the reasons I have digitally collected all the dressmaking and tailoring manuals is to hopefully draw attention to the fact that so many try to make this claim. So they absolutely cannot be.

I like drafting too, but I prefer draping because drafting ignores the effect of fabric stretch*. Draping relies on it.

It becomes so obvious why curved seams are curved when they could be straight. Just pin a corner of a square of fabric at the CF neck of any mannequin and the fabric does wonderful things. Cut the corner off perfectly diagonally and it will change things. Cut it into a curve?

Anyway. The pattern was draped from neck to hip at CF and CB and the side panels were pinned in a vertical line through and eased from waist up to armscye and waist down to hip and pushed towards the middle.

Princess seams are so common but super misunderstood. They are not purely decorative they have a function that darts do not. There have been curved side back seams for centuries, but a curved seam at side front? Very rare until you see hourglass corsets worn regularly. Even then double darts are more common.

So there has to be a reason for them being relatively rare, and it’s a very simple reason- it’s expensive. You need to account for seam allowance over the most prominant curve and that creates a lot of waste.

Pinching a dart out meanwhile is not wasteful. And it offers the ability to undo the dart at a later date.

But once you have that seam you can make use of the vertical stretch it creates. Because a cut edge has more stretch than a fold. And clipping causes even more stretch. So this is why I had to pin and ease the side panels from waist up and down. I had to start with the center of the panels as an anchor.

I wonder if I can manage to get the motivation to do a video on this. Primarily as an engineering thing, not right and wrong.

*Or tries to calculate it mathematically and it just never really works out. It makes for very pretty line work though.