Thoughts on Altering Patterns for the Wheelchair user

 Look at me with another post within a few days of the last one!

Pattern pieces for the trousers are now cut out and I’ve been busy looking for more patterns online, both free and branded. While I absolutely need to learn to get over my jersey hump (and will probably enjoy it hugely when I do), I’m always still on the lookout for woven patterns, especially those that will need little to no alterations. I also look a lot at existing wheelchair user clothing and the mods that have been made there. Of course, building in a degree of adjustability is also a good idea. 

Adding additional seam allowance to the legs and using Velcro, zippers or snaps (something else I need to learn how to use) is pretty easy, in my opinion - that’s dependent on what you’re going to use and the degree of overlap required, if needed. With a zip, you’re basically finding the right length and the seam allowance doesn’t change. For waistbands, I am usually looking at specific design and that is the presence of a slanted pocket, which can be used to create a much wider, accessible opening by adjusting the design of the waistband itself. You’d want to create a back waistband with some elasticity/adjustability and a closure under the top,  which would come under the front waistband. My view is that should be mostly flat, to reduce bulk, but with elastication on either side, probably to about 1-2 inches. Under that would need to go a pretty decent closure (because of the stretch), I.e. really secure snaps, possibly a skirt metal closure or strong magnets. The front waistband would be attached to the front part of the pocket and the back waistband would be attached to the back part of the pocket. 

That said, I need to play with this a bit more, because ideally you want to keep the pocket parts in alignment at all times, so it might be that the front waistband ends are flat and there’s a small amount of elastic in the middle of it. I’m not sure. I have a couple of patterns with this kind of pocket design on to play around with on my lovely polycotton and I’ll keep you informed!

I’ve also been perusing the Simplicity sale. Last week I got some McCall’s patterns I was after on sale and this week it’s Simplicity’s turn and (you guessed it) there are some I’m after from them. PDFs, saved to my cloud and BOOM. Happy Cass! I’m currently looking for dresses and skirts with high-low hems - because these work better for wheelchair users.

I’m still not at the part of cutting out the fabric for my trousers; I still need to check if I’ve got the correct size of eyelets and also considering tidying my notions stash which is a mess and things are everywhere. I need to print and make up a couple of new bra patterns and some top ones I bought (some of which need alteration in terms of room over the bust and shoulders, or, in the case of bras placement of hardware, alignment and/or including adjustable straps and, in come cases, size modulation and those things also need a lot of mock-ups. I also want to take a pattern from one of my existing store-bought bralettes, because I think I could make some small changes that would make it even better (and I’m game to try and make it front fastening as well).

I’m off to look through a bunch of my patterns for about the millions time and commit to which fabrics I want to use for various things. Maybe. I’m really tired after DIY shenanigans upstairs regarding laminate installation and my poor nervous system is a bit over-stimulated at the moment.

More Adventures in Pattern Adaptation and Other Assorted Shenanigans

 Greetings, lone reader!

Further to my last post, my online fabric emporiums of choice were perused, patterns were decided upon and deep breaths were taken; pattern alteration in my place has to happen on the piece of hard floor between the rug and the door in the sitting room. It always ends up in contortion and soreness. I literally don’t have any other surface to work from and the dining table probably isn’t big enough for this either. 

I wanted an adapted pair of trousers, like a pair of jeans (but much lighter) for summer. When I bought the fabric I wasn’t 100% decided on whether I wanted denim-adjacent shorts or trousers, so I bought enough to make the trousers with a chunk left over (and I’ve got some remainder chambray from the failed playsuit of two years ago) so paperbag waist shorts for me (or the niece) could still be in my future.

Prior to taking over my floor space with pattern paper and shooing away inquisitive cats every two seconds, I took a number of measurements, because standing and sitting can be quite different - certainly any wheelchair user who has spent hours tugging up the back of trousers and shorts or trying to pull the legs of skirts down will tell you this! These measurements included:

-Seated waist to crotch - back and front (most people need to lower the front and raise the back, but this depends on your body shape)

- Various leg lengths; inner leg measurement, lateral (that’s the opposite one to the leg measurement) and front leg measurement from the hip crease - all seated

- Hips and waist measurements in the seated position. 

Because I have a tummy, I didn’t need to lower the front leg from crotch to waist, but I did need to add on about 1.5 inches in leg length overall and I also added an extra inch to the hem, to allow for fancy turn-up. I added 2.5 inches to the back leg waist to crotch measurement, using a pivot method, which makes sure the overall waist measurement doesn’t change (though that can be pleated or gathered into the waistband if needed. This is more than what I need to add for my standing back alteration, which needs a 1/2 to 3/4 inch wedge added to allow for the lumbar lordosis in my EDS scoliosis spine. If, when I add the waistband, I feel that’s too much I can always reduce it a little when trying it on before doing my final stitching. The other alterations I will be making are in relation to pocket placement; I won’t be adding the back rear ones and I’ll probably be playing around with some of the others, mostly in terms of position or alignment. For a mostly seated individual, hip/waist pockets, unless opening from the waistband, aren’t very accessible and the alignment of most thigh pockets in stores (even for a lot of so-called adaptive clothing) is still designed for those who are standing. 

The pattern I am using is McCalls 8458; it’s a unisex pattern that has all sizes from XS to XXL. It has three styles; shorts plus two versions of trousers. The fact the design has specifically added pockets to the calf level and double layered ones WITH ZIPS at that was what drew me to it. It looks to be a really easy pattern to make up and it was a very easy pattern alteration compared to the usual shenanigans I encounter with the top half ones (increase for weapons of mass distraction, lower apex point, allow for kyphosis, remember you have a stupidly short body AND narrow shoulders).

Today’s part of chronic sewing was cutting out the new pattern pieces - I always trace off the original then add my changes. I also then label them with the pattern number, name of piece and date I made them. The only other thing I need to check is whether or not I’ve actually got eyelets of the correct size, plus buy a drawstring for the waist. The eyelets can easily be replaces with buttonholes if necessary. I won’t be cutting out the fabric, let alone attempt to start sewing (which will likely end up NOT the same as the instructions because of moving said pockets - which will then need to be re-marked on the new pattern pieces for location) for a good while. I’m expecting a bit of a crash following the visit of a friend overnight this past weekend, plus I’ve got meetings this week and another blog post to write and I need to do some research for it. 

In other positive sewing news, I’ve not only found some accessible bra patterns, but I’ve found a really good few that I can adapt to being front closure as well. I have found some of the hardware I wanted and have been chatting with a friend about buying some cheap versions that will never fit me so I can scrap them for parts (parts I cannot find online). I also have been emailing various retailers back and forth about the importance of adaptive garments in a range of sizes, including really large. There will likely be more emailing between myself and various pattern designers, as well as fabric retailers, in relation to modifications. I really just want some cheap fabrics to make some toiles at this point to fit. I’ve decided on a sports bra of some description, a comfort cross-over and a slightly more formal one. Cashmerette and Porcelynne have some really good patterns, although Lilypa designs have some excellent ones in a range of sizes that look like they could be easily modified to front closure - and some patterns are free! I’ve also got some comfortable pull on bras (they’re just not easy to get into) that I can look at for ideas as well. I have even managed to get hold of a proper tank with shelf bra - that comes in fuller cup sizes. Overall, my main considerations are:

-front (reversed) adjustable straps, either standard or using Velcro (remembering to try and use the clear plastic fittings where possible as we are a bunch more likely to need X-rays and MRIs)

- front closure, either magnet or hook, remembering to include something to try and stop the hook(s) from coming undone. Snaps are also a consideration, with perhaps a little Velcro to secure

- remembering that all of these designs need to include some kind of mini loops to aid closing the things and their placement. 

There are endless possibilities and I’ve now got patterns to base these on. With any luck, I’ll have something that fits and meets my needs soon. Glamorise and Springrose may work for a lot of people, but the former has too many hooks for bad hand days and the latter doesn’t really cater for my size. Lots of lovely people also kept trying to direct me to a company I already know, but their flexible sized bras don’t work for me and my shoulders are often too unstable for me to get the pull on styles on and off, particularly when my skin is a bit damp. And sometimes I am too tired to deal with the wrestling myself in and out. I’ll keep you posted on the design process of all three, but I think the crossover style will be first as it is likely going to be the easiest to figure out the mods for and a style that significantly avoids unaboob sweating. 

There may be another post today about clothing items and patterns to watch out for if you’re a wheelchair user, but I also do have to work on this other blog post as I now only have two weeks really to get the draft done of my part. 

Plans for the podcast have stalled a little as my co-host has a lot going on at the moment, but we are still committed to this and I’ve found an independent designer to commission for a logo and possibly other work down the line. I know a lot of people are using AI for merch designs and the like, but I am not a confident user.

Bye for now 

PS I have also created a character that may end up getting used in an ongoing series by AI and I YouTube channel. Yes, the series is set in a magical world created by someone whose views I don’t support and who I don’t particularly care for, however the creator is sound. So sound I chose to support him on Patreon while he was demonetised (and he’s just got that back) so he could continue his work. He’s now built and inclusive community of supporters in the Writers’ Room and we also have a Wiki! We love being included, involved in character design, sometimes plot as well and generally being chaos agents across all age groups. Some lovely people created my character’s image and it’s getting good feedback as it’s also disabled. I’ll let you know how this pans out! 

Adventures in Pattern Adaption and General Life Update (Plus - Coming Soon!)

Quick life update first; The elder feline overlord has not been the best and as a result it looks like we are planning palliative care for him. The next issue is if we go forwards with the least invasive testing (that will just stress him out more) or take things as they come and deal with them as they arise. This has been a lot of additional costs (covered at least on this occasion, unlike the £1k plus dental work two years ago!) on top of unexpected expensive dental work (I need a replacement permanent brace, had to have a filling of which NHS materials just aren’t up to snuff and this is over £400). So far, the outlay (and I won’t get the dental back, obvs) has been getting on for £1k and my savings have been wiped out. I’m currently very short until the next ESA and monthly IIDB, plus the insurance remittance comes in. 

The plans for a home power station with solar panels to keep the APAP going in the middle of the night and the new fridge freezer are on hold, indefinitely. While I’m still planning on attending a conference over a long weekend in September, I’ve yet to find the cash for the accommodation, subsistence, travel and cat sitter (I can claim some of the costs back, with my dear friend who lives in the area also offering me to stay for a night or two to offset costs and will be staying with me on at least one of the nights I’m in accommodation, offering to help offset that). The issue is, just as with insurance, that getting funding back depends on a) being approved by the support fund committee (two weeks till I find out), b) how much they’ll fund and c) I still have to cover the costs up front. However, it’s looking increasingly likely that the motion I am working on will be going ahead and I am pencilled in to summate - we are working on a plan to accommodate that and a back up speaker plan. Yikes.

Anyway, in recent months, as I stare at the pre-washed fabric on the ironing board, ready to be cut out, I have been thinking on patterns, adjustments for the mostly-seated (including POCKET PLACEMENT), my ongoing quest to Make Historical Costume Accessible and looking into how to adjust patterns for the more generously endowed. I’ve noticed that accessible bras and even front fastening sports bras just don’t go up high enough in terms of cup size. I’ve found one that’s just about workable, but I still spill out, the shape is still off and I have to import it. As for most items of clothing, just because the overall chest measurement is sufficient to accommodate the chesticles, it doesn’t mean that the proportions will be OK; this is especially the case when you need to accommodate extra padding on the front at the stomach (a non-liquid grain storage facility, if you will), a short waist, lumbar lordosis, said frontage needing bridge engineering for support, narrow shoulders and a kyphosis. And I’m still scared of jersey.

So far, I’ve almost got simple tops and dresses down, by moving the apex point (did I mention that’s also an issue?) and doing an FBA with a shoulder narrowing, but I’ve not tried the mods on actual shirt patterns or more complex dresses. Then there’s the additional problem of changing up closures, as I find back zips and button closure to be increasingly difficult, especially when I’ve got the hand tremors, which kicked off again last week. Back zips need to move to the front or, where possible, removed in favour of a size zip and back button neck. Buttons can be replaced with Velcro or magnets (the latter being more independent-friendly for some) and I would also love to mod PJs and nighties for hospital use.

Other top considerations for both woven and jersey fabrics are how to ensure the back isn’t that tight, especially for manual wheelchair users - venting or split backs help, but how do you accommodate that for jackets, shirts, sweaters and avoid freezing to death in winter and a super tight collar or across the back shoulders? And capes. Obviously, capes. With some kind of way to secure the front down so it doesn’t flap up in the inevitable icy breeze. 

Trousers, skirts and shorts are generally easier for me, as I’ve been accommodating the lumbar lordosis (the exaggerated S bend at the base of my spine, meaning I’ve got a larger waist to hip ratio and a “sway back” - it’s how I was born and due to the EDS scoliosis), though this is slightly more exaggerated due to now being seated almost all the time, wheelchair or not. Measurements are also slightly different (bigger, basically) and, believe it or not, you have to accommodate an increase in overall length of the garment, because when you’re seated, the crotch requirements are increased meaning the legs pull up by a couple of inches. Key measurements to take on top of the usual are: Front and back crotch, thigh measurements and front and back leg measurements from the hip crease - inside leg is unlikely to change, in my experience. When it comes to skirts, it really depends on 1) how long you like them generally and 2) whether or not you might find it uncomfortable to not have enough skirt under you. I’m currently checking my measurements to see whether or not I prefer a skirt with deeper side vents, if I need a dropped hem at the back and all this is on top of what I’d usually do. 

Also, seams matter, especially if you’ve ever suffered from pressure areas; it’s generally going to be a good plan to remove any back pockets and middle seaming to accommodate this. Using more of a stretch in fabric is more comfortable, side zip or Velcro fastening makes life a lot easier, leg seam openings can help for some, stoma and feeding tube pockets may also be a consideration and shifting openings to the side seam may be more comfy generally. 

With jackets and shirts, along with tops, having longer side vents on those seams may help, or look for a design that goes over the hips like the Boardwalk top from Greenstyle. Cropped jackets and similar are a lot easier to handle. 

I’ll have to ask my friend who wears long length dresses about how she manages them, but you can wear full items, you just have to be good at holding the fabric in! And maybe not a 50s puffy underskirt… 

The last bit of news is that my dear friend, Empress P, and I have decided to start our own podcast and we then intend on writing a book about living your best disabled life. Keep your eyes out for Never Mind The Wheelchair podcast, coming soon when we figure out how to set up and use the equipment and recording programmes, edit and upload our own work. 

This is all on top of the usual advocacy and battling local services for a care package, while trying to get set up for running for local elections next year in what will not be a target seat. That means I’m basically a paper candidate, but I have needs to meet. I’m growing increasingly confident about my ability to help people in this arena, but obviously I need to think about the lack of support impacting on that ability to actually campaign and, potentially, be a local councillor. 

If only I’d do more regularly blog posts; then they wouldn’t be so long! 

Adventures in Crafting and Post-Covid Long Covid

 So…along with the inevitable recovery from the second bout of Covid (it’s horrendous. I thought it was bad before I had had covid again and now I’m back to three hours of unconsciousness if I decide to shower. Joy. Send an email or read a document? Ditto). Today, I’m feeling knocked out because I decided to stitch up the playsuit from the vintage pattern and… I might have forgotten to check my new measurements (though I recently checked them and they were as they usually are). It DOES fit, only the pockets (macgyvered from another pattern) are pulling and muggins here decided to completely finish the seams BEFORE checking the fit (as I could, reasonably, have reduced the side seam allowance to maybe 3/8 without affecting the overall fit). I can get them on. I can sit down without the seams straining. I do need to work on this pattern again, especially if I want to sew it up in anything more robust for winter and, in all honesty, it might work really well in a substantially thick knit without much stretch (not that I know how to sew knits. I am scared of them and I don’t have a properly serviced and working serger). It was a worthwhile experiment, but I’m going to tinker with the pattern again - which is Simplicity S9792 vintage from Jiffy range. The pockets came from a tunic/dress McCalls pattern as it didn’t have internal pockets with the pattern. I just have to find buttons, sew on suitable sized snaps (which I don’t have) or skirt closures (which I like and do have) but safety pins will do for now and if it comes to it, I’ll just sew buttons right through all the layers of fabric. My zip installation….worked. It’s been a while since I put one in and it kind of shows a bit. I am pretty sure I was using the zipper foot - again, I should have checked. I also need to hem the legs and work on the back legs pattern a bit.

I do like this pattern, not least because the zip fastening makes it really easy to get into, which is importantly if you’re disabled. The shoulder design is also useful if you’re expecting to have to spend time on IV/post surgery and with chronic conditions, opting to buy patterns which are easily adjustable to these considerations is important. Same with being a wheelchair user. I’ve found the Cashmerette advice in the book Adjusting the Curve to be really helpful with this. Increasing the seat (aka over the backside and up to the waist) is really important (I was already doing this with my sway back, but now I need to increase that more), but I’m also now having to adjust for the overhang at the front (something I think was MAJORLY affecting the playsuit at around the hips), adding leg length to account for sitting in a wheelchair and so on.

In other news, my experimental Knickerbockers worked really well and I’m very pleased with them! I’m toying with the idea of not bothering with the whole closure on the leg thing, though it did work, and just using elastic and coming up with some kind of fake button tab thing. Though it does work and looks cool! 

Anyway, I’m off back to check the fit of this thing as I wait for a drain engineer to come out on an emergency and hem the legs. Later! 

Well, it’s been a while

 To be honest, I had not realised it’s been almost a year 😲. I’ve been busy with long Covid advocacy and it’s exhausted me to the point of relapse. And I have Covid again. Somehow. I’m so cross, as I’m Covid cautious. One of my cats had to be put to sleep, but I have welcomed two ginger ninjas who Archie is happy to be around.

We have had a change of government, after one of the worst winters & springs in terms of politics. I’m not hopeful about the new government, but at least they’re not Tory. Same rhetoric on disabled and chronically ill. And the disabled & chronically ill with Long Covid are currently not well enough to challenge this effectively. Not with everything else we have to do.

I’m currently having to buy a whole lot of new splints and shoppers. With my pension being 1/3 of my former income, even having full ADP and a bit of ESA, it’s not really enough. I also need to fund a power add-on for my manual wheelchair (what I need isn’t funded under motability). I can’t just get cheap splints. I’m managing with a new thumb one, but it will need a decent new one soon, plus I need two to deal with my dropped foot and spasms issues.

I do have a cleaner back. This is a huge relief. I’ve at least got a clean home twice a month. I am still waiting to see a social worker (nearly 18 months at this point) for a personal assistant assessment. I’ve also been diagnosed with sleep apnoea secondary to Covid in 2020, but the waiting list to be seen for APAP is long. PoTS is an ongoing issue. My local trust still refuse to permit prescription of medications for MCAS, even with a new letter from one of their own recommending it. Speaking of which, I now have to get my records updated, as you need them for benefits stuff. I absolutely hate this - I don’t understand why the agencies can’t access these records themselves.

Due to all the work I’ve been doing for the Scottish Covid Inquiry, I’ve not been able to do anything much else at all. Craft took a back seat, my other LC projects also did too. I’ve taken part in some research projects and studies, but social media is a low priority and recently my hand tremors and cognitive dysfunction started again. That’s frustrating beyond belief.

I did shorten some old PJ pants into shorts, not that the weather is good enough to use them, with two more sitting waiting to be done. I have cut out pattern pieces for planned makes (the fabric has arrived and been washed). Then I realised the big ironing board is in the cupboard behind the new cat litter tray… 🤦🏻‍♀️.

So that’s me. I’ll write a post on how I manage symptoms as a lone person on bad days soon. When I feel a bit better and I have more energy.

So….in about another year then? 🤣. TTFN 

Crafting and Other (Long Covid) Updates

 Seeing as I FINALLY got down and cut out my knickerbockers, following a MacGyvering of two Simplicity patterns, I thought I’d drop in a post to update on various crafting shenanigans. 

As I can’t remember (read: didn’t bother to check the last post), over the last few weeks, I’ve finished my trans inclusive pride flag blanket replacement, knitted (frogged and re knitted) a rainbow dog jumper for a neighbour (from blanket leftovers), a cardigan in black, red and grey for my GP’s new baby (also from said leftover yarn) and started both a Sirdar jumper in Jewelspun (which I thought had wool in it, which will teach me to check properly) and my first pair of socks of the season in Cascade heritage solid and print. Why both? Because this tunic sweater is the biggest garment project I’ve knitted, I know it’s sometimes a good plan to knit something smaller, so you finish things. I set myself at least ten rows of the tunic sweater every day to knit, which is probably about 5cm. I also like knitting small things. Especially socks. I do have a sock yarn problem, so it’s probably good I’m keen on knitting them, huh? 

In terms of socks, I am aiming this year to get at least a pair finished by the end of the month and the Cascade Heritage print is possibly the thinnest yarn I’ve ever knitted with, but it’s incredibly soft. The colours reminded me of the Hocus Pocus witches, just in a more pastel colourway, without being actually pastel. I’m using a sage solid for the rib, heel and toe and it looks lovely. Given this is how what I like to do, I’ll almost certainly get a second pair out of this yarn (like I did with my Christmas socks for myself last year - someone was most pleased to get a pair of socks big enough for their feet!). The pattern I’m using is the one I knitted up in a lovely, now discontinued, cashmere sock wool by Debbie Bliss and, I regret to say, I fiddled with the pattern, resulting in a pair of socks just a smidge too small for me, so they were also passed along to a grateful recipient. Hand knit cashmere socks, with a lace stripe down each sock! She was pleased, but so am I to be finally able to knit my own pair!

I weakened and bought some Opal sock yarn yesterday in a 6ply, which I’m either going to knit slipper socks out of or just some socks. I’ve got some excellent patterns for thicker socks, so I’m looking forwards to using up the lovely pure wool I used to knit the greyhound jumpers over the summer, along with some slipper soles from Regia and Bergere De France - yes, I do want some new slipper socks.

I had a LOT of sock yarn leftover from last year in some prints and block solids and I then decided to buy yet more sock yarn - as of today, four of the six balls have arrived from Lovecrafts and Hobbii (though one colour way IS going to almost match my tunic sweater when it’s finished, so…). Look, I have a problem. A sock yarn problem. I know I do. But I’ve got patterns and a determination to not buy any more now. Promise. 

As I’m now not well enough to work, I am enjoying knitting and pottering. I’m slowly managing to sort through things a little at a time and I know that once I finish the sitting room I’ll feel much better, same with the kitchen. I recently was gifted an air fryer, which I’m very excited about.

Now, if you’ll excuse me, these socks aren’t going to knit themselves, nor is the tunic sweater. Sewing needs to wait for another day…

In terms of Long Covid, things are much the same; waiting for appointments, having others, waiting to hear about decisions on benefits, though I am now in the Support Group for ESA, which means they think I’m not well enough. Just another two and the pension to go. Knowing I’m relatively financially secure will make a big difference to my anxiety levels. However I am still facing selling my home. Sigh. 

Do take care.

2023 Crafting and other Update -

 I know we are at nearly October, but given how a) I am and b) my ability to forget or put things off, here’s where we are with the thing I had hoped to achieve this year.

Regency Wardrobe: The short stays don’t have fan lacing, I haven’t finished dealing with the petticoats and the fabric for the new dress is still either a) fabric or pieces of fabric or still a duvet cover. No caps, knitted mitts or bonnet, but I did do the first draft of the short cloak and in theory that won’t be too tricky as it’s basically two seams. However if it needs to have the edges bound, I have to measure the entire edge and order the bias. 

Other historical bits: non existent. Nope. 

My wardrobe: I did completely frog the legwarmers and redo them, without the feet with a size smaller needles and in the round. They now stay up better and the tension is a lot better. I’ve been meaning to write up the pattern properly and in a range of sizes, then sell it. I enjoyed MacGyvering the pattern and am really pleased with the result. I have bought the Star Wars fabric for the replacement dress when it was on sale. It is neither washed, nor cut out let alone made up and I would need to check my alterations for the bust in the largest size are translateable to the next size down or if I need to do a bit more pattern redrafting for that. AND I am tempted to make trousers instead. I did decide to keep a skirt I was going to donate and use the fabric to make a skirt I want, but again, I need to do a little redrafting of that (or, more likely, figure out some maths, use an off cut for a waistband and and get happy with some kind of cutting device, my machine and thick elastic). The skirt could be a VERY quick fix. I’ve also managed to wash the black fabric (originally intended for a skirt) and wool check and I was super pleased that the latter CAN go in a wool cycle in the washing machine. I’ve had a look at the patterns I’m using to create the knickerbockers, but I don’t think the first draft of this quite worked, so I’m going to have another go. In terms of pattern purchasing, I’ve bought a really good short one, PJs with pockets on the pants and some underwear patterns as well, as I’ve admitted defeat on most inexpensive bralettes and I would like to try making my own, though I think I may end up MacGyvering patterns until I get what I want. I have discovered Molke though. I have restrained myself on buying too much more fabric, so alas, I did not buy the Christmas mince pie fabric when it was £1 a metre! I’ve bought a little here and there - a metre each in black, grey and navy as potential lining, plus replacement Star Wars fabric if I didn’t mention it. I WAS going to make a replacement dress, but now I’m sorely tempted to make either a pair of trousers or a fitted shirt for me. One thing I do need to buy is some calico, which I use to see if a pattern will work or needs some alteration and it usually ends up as the lining of some things. If I do intend to work on that regency new gown next year, there’s a bit of work that needs doing to make that work, such as altering for lower bust point, narrower shoulders and then that means the sleeves will need tweaking too. I think I’ve also decided on the fabric I’ll use for my next shift, but I’m not buying that yet - not least because of money, but also because that pattern will need tweaking as well. 

Tech etc. I am thinking of taking up Vlogging and as it sits, I now only need a decent camera. I am thinking about doing a general chronic life vlog about what life with long Covid is like, as well as projects and what not. Unfortunately, I’m not sure if I can deal with editing and so on on my iPad or chrome book (and the chromebook is currently out of commission….as I forgot my password). I now have a cheap microphone, plus a ring light, but I don’t know if that actually works. Whoops? If I’m going to buy that, it needs to be soon. I do have a bit set aside that I can get a basic one, just not a laptop. I don’t feel I need one, I just need to know how I can edit or do simple edits and uploads from my existing chromebook or iPad. 

So long terms plans are to try and make at least one long tunic shirt in the basic style of an 18th c men’s shirt, in navy or grey, to fit with my aesthetic. I would like to get a waistcoat made, probably using an 18th century jacket pattern as a base, mainly because I’ve used that before and know what I want to do to make it work for history bounding or just wearing because I want to. I really must do something about my regency stuff, making the short cloak and so on. I should probably get on and use the fabric set aside for 18th century items, but in all honesty, it’s so difficult to get in and out of corsets for me now, that’s not a priority at all. I’d also like to use those two duvet covers to make some either historic or modern garments - the striped one would make an excellent long kaftan and I have just the pattern for it!

Yikes. It’s been a while

 I ended up not updating the blog this year for a number of reasons:

1) The Keyworker Petition Campaign took off in a BIG way, leading to over a hundred thousand supporters on the Change platform. It was handed into 10 Downing Street in March, but the London trip took so much out of me I’ve been in a relapse ever since, though up until August, I was involved in a number of other long Covid projects, with Long Covid Scotland, as well as the Scottish Healthcare Workers’ Coalition, who are a core participant of the Scottish Covid Inquiry. Confidentiality reasons mean I can’t say too much about that, but I can tell you that there is now a survey (which I originally drafted) for any health or social care worker to complete, with or without Long Covid. I was advised I was near burnout and had to stop 95% of advocacy. I’m hoping to get back in the saddle, but that’s dependent on a number of other things getting done first.

2) I finally lost my job in August. Medical termination. I knew it was coming, but it’s still been a shock. I also came off the U.K. nursing register at the end of the same month, so I’m no longer a registered nurse. I’ve only been qualified 12 years, so it’s been a very nasty and frustrating shock to the system and something that is entirely down to my Covid infection in 2020 and the lack of proper support and care since.

3) I am currently trying to sort out my home, as it’s looking very much likely that I will have to sell. I am, at least, on the council housing register, but the chance of staying in this area is remote. The best case scenario for me is that I can stay put until I qualify for sheltered housing and see if I can’t move back to the area I grew up in - which is still close to where I am now and there’s a good chance my GP practice would let me stay with them (and it’s on a direct bus route to them). However, when you’ve got relapsing and remitting symptoms on the daily, with severe PEM and PESE, trying to clear said home is extremely difficult. However I have now gone through about 80% of my books and a van load of things recently went off to charity shops. I’m also going through my shoes, accessories and bags etc, as well as clothing, again to try and slim that down. The final load will be ready to go to charity or sale in the Spring, whether I’m still here or not. I’ve also identified furniture I am going to let go as well. I suspect that once I’ve completely gone through all my cupboards and lockup, all that is gone and everything is more manageable I will feel a lot better. It’s just chaotic at the moment, which I absolutely hate, but there’s not much I can do about it and it all has to be done very, very slowly, lest I end up in bed for days on end. 

4) Shenigans with local health providers continues: One appointment got pushed back nearly four months, due to their closing the local testing clinic without warning and the next closest didn’t have any appointments for another 10 weeks. Then, as I cannot get equipment back to another clinic within 24 hours, they’ve cancelled those appointments and put me back on the waiting list for an inpatient appointment and that’s got an 18 month waiting list, less the four months I’ve been on it. Still no word about the exception for a medication. And then there was the farce over my flu vaccination. The Costumeer is VERY displeased with all this and no, I do not take this passively: A complaint has been put in about the horror show that is my nearest mass vaccination clinic. My MSP is also involved. 

5) I am still crafting when I feel able. I recently finished two greyhound jumpers and am now working on a replacement blanket for myself - it’s called a memory blanket (but the Hue Afghan by Knit Picks is very similar) - that has a cunning method meaning you can make this as small or big as you like and each square of it is constructed by partially or entirely picking up stitches from what you have already knitted - this means less sewing up (ie exertion) and I’m also making good use of another technique that means you partially incorporate loose ends as you’re knitting so there shouldn’t be too much of that either. I’m getting through anywhere between 3 and 6 squares a day. I managed to weaken this morning and buy more yarn and a pattern for a sweater I saw. It’s a bit more of a challenge as it’s a jumper for me, longer length and a chevron-style patterns, meaning you are increasing and decreasing on the same rows. I shall be using lots and lots of stitch markers! I’ve also promised some more dog jumpers to friends, but in most cases we are waiting as they’re mostly puppies or I need to see how much yarn is left from projects I’ve just completed or am working on. As the squares of this blanket are a bit smaller than I wanted, I’ve got to decide on how I’m going to make it a bit bigger before I use my grey yarn to knit the borders, but given the yardage used so far and what I’ve got left, I don’t think this is going to be an issue. Plus, once the main section is completed, it’s a case of dividing each colour left in half by weight, so equal amounts go on top and bottom edges. I was going to do smaller squares in the same method, but by the point I’m done with this main 11 or 12 x 11 stripe sequence, I think I’ll be over it and just want some stripes! I’m hoping that my 80cm circular needle will work for this, but I’m resigned to possibly purchasing a much longer one if needs be. I’ve got plans to cut out and sew up three or four garments - as two (or three, if I do two colourways of the knickerbockers) are autumn/fall style, but I’ve really got to adjust the pattern (I am MacGyvering my own from two - basically I’m altering the leg to that of another one and it’s not gone well. I may end up with the black ones, rather than the wool check, as the former fabric is cheaper so I won’t be too upset if it doesn’t go completely to plan). I’ve also drafted an 18th century short cloak and I’ve got the fabric for that, plus lining for the hood and some cheap metal closures. I’m not yet sure if I will be able to get away with leaving the edges unbound, but if the cloth is as lightly fulled as I think it is, it means it’s not a woven that will fray, so, as per historical ones, I can leave it. My replacement Star Wars dress or possibly trousers I am leaving till next year - the other one was given to my Aussie pal as it’s too big for me but fit her perfectly, but I bought replacement fabric. I keep searching for inexpensive, lightly fulled broadcloth wool mix fabric to make another long cloak out of, as mine is a bit too heavy a weight to drape properly, but I still haven’t seen any in a colour I want. The short cloak I intend to make non-costume use out of. Eventually I hope to trim it in Ribbon, fyi, but I don’t know when. If I do have to bind the edges, I’m just going to use plain old bias and I’ve got two colours to pick from. But it will probably be black. As most of you know, I tend to start knitting socks when the weather turns - I’ve got plenty of sock yarn to use! I’ve also got a lot of worsted/aran left from the dog jumper projects, so I will be knitting up a pair of slippers for myself, probably using two strands to achieve a chunky weight. I’ve got a pair of slipper soles, but my source recently closed down, though Bergere De France also do two types. 

6) Financials. I’m expecting to get 12 weeks redundancy plus my AL and they said that works out to a similar length of time. If I get it in one payment, unfortunately that’ll be taxed silly. I’ll get back the tax at the end of the year, but by that point I’ll just be out of the non-contributory stage of Employment Support Allowance, so whatever I get from tax back will be taken off my contributory based benefits. I am still waiting to hear about which group I’m supposed to be in, as there’s not only a different level of support, but also activities to engage with, though I will appeal if they consider me able to do some work at the moment as I can’t leave the house most of the time, let alone get through most days without a long rest and nap. I haven’t heard about Industrial Injuries Disablement Benefit - which I wasn’t expecting to get - so I’m calling that agency on Monday to find out what’s going on. In terms of the Scottish benefits agency, I found out two weeks ago that despite having my paperwork for nearly four months, they haven’t even got to the point of assessing my change form (and knowing my luck, they won’t have got to it by January when my current award expires, meaning that I’ll end up completing two change forms, essentially). I have been warned it’s taking more than eight months for these things to be sorted out (worse than when it was being handled by the U.K. agency, which is widely regarded as awful), which is extremely stressful to hear when you’ve lost your job and need to know what your income is likely to look like going forwards. I don’t know if the Pensions Agency have received my paperwork, but they’re also taking at least six months or more to decide if they will or will not award you early retirement, with mine not being worth much as I’ve only been working 12 years as a nurse. As for my legal case, there’s no word yet. I do have to forward on some information I got via my MSP, as it’s pertinent - not least the level of ableism displayed towards most people with chronic conditions in respect of management risk assessments. But I’ll need to look at the Covid age thing again, as there’s a very pertinent line in there about managers taking into account local prevalence of virus when deciding on non-shielding staff. 

I try to remain optimistic, even though I now need a wheelchair and I’m waiting for that appointment. Today has been a high pain day and I’m reminded of the levels of recycling that need done. I also need to get to the local grocery store. I’m also thinking of vlogging and learning how to edit. 

Friends, I hope you’re well. Should I remember, I will be posting some advice/shortcuts/things I use for bad days. 

If I remember… 

Plans For The New Year

 Plans for the new year in respect of crafting include knitting the vintage jumper, finishing off the sock yarn stash and tackling the short cloak pattern. My sister has also requested a pair of slippers (so I am looking at slipper soles and yarns for those). 

I am also mindful of finishing altering the two Regency petticoats and cut out the short cloak. I also would like to get going on the new Regency dress I have planned, which means locating the particular pattern and putting it together with the fabric, that’s been kicking around in my stash FOREVER. I also have my eye on an old cotton sateen navy duvet set for a waistcoat, possibly with a long skirt attachment to make an over-robe. As the duvet set is a king size and I bought at least two pillowcases, the possibilities are ENDLESS. I am reminded I need to sort out the lacing on the regency corset to make it easier to get into and I WOULD like to play around with my pattern to give myself more of a short stays set. If I added a skirt to that and made a shift with a flap that sits over the stays…. I need to stop letting my head try and work out those things. But research planning will be fun.

I also ALWAYS plan on using up the designated 18th century stash and fixing my Outlander (S1) plaid skirt and making up both a bonnet and at least one or two caps. I have been saying this for at least 5 years, so if any progress is made on those, I will be very surprised. I DID find both my behind pads and shift that didn’t work, so that’s a win. I’m not sure what to do about the latter - any pattern needs adjustment for the shoulders and a full sleeve and gusset redo, meaning I might as well look up some extant sources and actually pattern the thing with the measurements I took for me. I will likely MacGyver this using the neckline of a pattern I bought. 

I am trying to restrain myself from buying up lots more fabric; I definitely want to redo the Stars Wars dress in a smaller size, but that’s pricy fabric and my job situation is up in the air. I am also trying to restrain myself from buying lots of Christmas fabric in the sale to make a new set of Christmas PJs and tunic dress, but it IS £1 a metre. I’ve also been looking at patterns to round out my basic library, which include a basic set of classic PJs for adults, though I much prefer to cheat on the button holes etc. my hands don’t work that well tbh, so modifying patterns is what I am about. I should also REALLY read the guide AGAIN and properly figure out button holes on my Janome. Which I have owned for nearly 13 years. 

I am also still hunting for my saw and sandpaper, so I can cut down a paint stick for a busk. The one I ordered off Etsy never arrived and there was no contact from the seller at all. Etsy kindly refunded me, but I think I’ll stick to the paint stick method where possible or use my existing Mantua Maker one for long stays. 

I really should make a list and then what I need to purchase for that list, if I need it. 😬

The other side of the plans is relating to life and activism. For various reasons, I am having to complete an application to go on my local council housing list. As this would be for a one bedroom place, this would mean having to drastically downsize pretty much everything. I also have to make some calls about my nursing registration, proper benefits advice and what not. I’m desperately hoping I won’t have to leave my home, but I have to plan for that eventuality. I am still not fit for work and I can’t see effective rehab happening any time soon, given the last (almost three) years of lack of support from my local healthcare providers. A major letter of negative feedback requires to be sent, once I have redrafted and edited what I have saved. I am also attending our legislature for a closed session next week with some fellow local Long Covid advocates. I’ve also made a contribution to a major media programme on the condition, but I don’t know if the videos I made will be used. On top of that, our petition for compensation and pension for key workers with long Covid is finally taking off, so there’s a planning session coming for that. I am thinking drafts of letters/emails for people to send to their elected representatives and local newspaper editors. 

Yes, I have a whiteboard. Yes I make lists of things to tick off. Yes I think I need a lot of help. 

Stay cool.

Christmas knitting and so forth

 So after the poncho disaster, I passed this on to my niece (9) and it fits her perfectly, I estimate that she’ll likely be wearing that until she’s probably at least 14 or so, if not longer. She also really appreciated her knitted socks. Unsurprisingly, not only does N want to do more sewing, but she wants to learn how to knit, so she’s off to find the knitting book my mother gave me, which I passed on to my nephew and at some point this year, we will be doing the basics.

I also finished up some baby cardigans for my mother’s cousin’s grandkid and great-niece. One of these has been handed in and the other I need to post with the baby hats I made last summer for both of them. The surprise baby I didn’t know about has received a tiny baby hat I made last year and which he LOVES wearing.

The rest of the knitting projects were me using up a good portion of the sock wool in different weights, so I’ve made two pairs of chunky wool mix socks. (One is a Lion Brand pattern, for everyday socks and the other is a Hobbii pattern) As well as that, I made two pairs from my West Yorkshire Spinners hollyberry and cherry drop yarns which you can find here. As I’ve been experimenting with heel types and sizes, the first pair turned out too big for me, but which are currently being appreciated by a friend as a gift. The pair for me was knitted up in a slightly different pattern, with a short row shaped toe, which I like doing a LOT, despite the grafting at the end. Both pairs used the cherry drop red yarn for top ribbing, heels and toes. I also used this yarn from Hobbii (though the colourway I used, being limited edition, is now sold out) to make a double rib pair. I used the cherry drop again for the heels and toes here. I am now working on another pair for myself, using Debbie Bliss Toast yarn in 4ply, but I think this may have been discontinued as I now can’t find it. It’s in a gorgeous teal shade, with red heels (using the cherry drop - I am getting a LOT of use out of that). 

I am enjoying trying out different techniques and patterns: Most of my socks use a standard heel flap or boomerang heel, but for this pair I am trying out a modified yo-yo heel, which doesn’t use two rows all around of knitting between the decreases and increases. I am doing this using two circular needles - again a technique I have never used before. I think I both like and dislike using two circular needles (for example, I am already back to two DPN needles for the underside of the foot, but that’s more the poor quality of existing short circulars I currently own), but I think I do like the use of short circulars for the top side of the foot. This is mainly because I find it easier to knit any kind of heel and also maintain the pattern, if used, across the top side of the foot.

One of the reasons I wanted to try out the modified yo yo heel (using a technique from this video by Suzanne Bryan was because I am finally increasing my sock pattern skills to use lace. I initially started using a Cascade heritage lace Shannon’s socks pattern, but was finding it slow going and frustrating (as it really needs knitted on 5 DPNs, magic loop or two short circulars and I only have a basic set of 4 DPNs AND started knitting them in a size too large needles, which has not helped), so I ripped this back and am now knitting up a pair with a simple lace strip down the outside upper edge of each sock. It’s the Let It Shine (v 1.0) pattern by Sarah Youde (aka A Dorky Emu) and I probably found this on Ravelry. If I move to a more full lace sock pattern, I think I’ll find something a smidge easier than the Shannon’s socks and work my way up! I haven’t decided on the toe yet, but I fancy the one in the pattern, a standard wedge or round toe. 

So that’s the seventh pair of socks I’m currently knitting. I’ve got yarn for THREE more pairs of the things too and I am definitely keen to use up leftovers of what I’ve got, so I am thinking of knitting up some shortie or anklets using up the remains of the pairs so far. I have been SERIOUSLY impressed with being able to get two pairs out of a standard WYS 100g ball, when using contrast rib, toe and heels. Will I continue on with socks after this pair? I don’t know. Half of me wants to get all the yarn used up (and see if the Toast will extend onto another  pair for contrast) but I also have a LOT of yarn in the stash I would like to get used up and a powerful need to knit up a vintage pattern redo in 4ply I have kicking around. Which, being 4ply and a short-sleeve sweater will probably take FOREVER and need some consideration as to whether I need to lengthen the body FOR REASONS. I also have some chunky wool cast on at the moment to see how much length I can get from one ball of Paintbox Simply Chunky (which is basically a large swatch as part of the adult poncho planning). 

I am planning on writing up the poncho pattern and putting it on either Ravelry or Ko-fi, but I will then have to abduct the niece (and poncho) for a photo shoot, because I forgot to take photos. Because of course I did. 

Happy new year to all of you! (And yes, I knitted two pairs of slippers for a friend as light relief from socks)

Knitting Disasters

 So, one of the projects on my list to knit (for myself) has been a poncho. I had a look through a few patterns and realised that I’d probably have to come up with something I designed myself.

This may have been my first mistake. 

I wanted a fairly square-shaped construction, meaning two panels and every pattern I looked at called for two panels of approx 40 by 70cm, with border, to achieve this. I’d already slightly sized up from a pattern I liked the look of anyway. So I knitted up the panels in Paintbox wool super wash worsted (a genuinely lovely and cost-effective Aran/Worsted weight yarn, if you want to know), did the rest of it and tried it on. 

And…it’s fine. But a smidge on the smaller side and doesn’t come far enough down my arms as I’d like (it’s sitting just above my elbows, feeling Ok across the chest, if I don’t wear anything under it and then neckline is probably a smidge tighter than I’d like, but more than fine and I can get it over my head). 

For reference, I’m currently about a size 18-20 UK. This means that the knitting patterns I’ve seen are for those possibly up to a size 16. Grrrrr. I’d have had to develop my own pattern anyway. 

In case you’re wondering, now that I’ve knitted up the borders, neckband, stitched the thing together I am NOT undoing all this and starting again. It will just have to be a gift for some other lucky soul. What I AM going to do is reknit this, in black (I wanted black, useful for wearing out) but I am undecided if I will do this in worsted/aran again or something a bit chunkier - which would be less smart, but fulfil a purpose. 

But here’s what I have figured out (so far): 

1) The panels need to be both wider AND longer (excluding the knitted borders, which are added after)

2) The length of the panels needs to take into account a slightly wider neckline required - between 2-5cm overall (for reference, the 40x70cm panels is relatively tight, so I reckon adding 2-5cm would be a good balance)

3) If I decide to make life a little easier and add in a border to the panels, this should NOT be included in the length of the panels (if that makes sense) and would only be on one end of the panels.

So, that’s where I am at with this. If I determine that this pattern will fit a smaller adult, then I can use it as a base for my first knitted pattern, but that needs lots of photos taken and diagrams done for a PDF which I am not good at. If this doesn’t, then I know it would fit an older child/young teen (and N, one of my nerflings will be getting something else for Christmas, especially as I remain unconvinced the sweater I knitted is going to fit her).

In other news, I weakened and bought a bunch more sock wool from Hobbii as they had a sale on. I have also finished the first pair of thicker socks, so I’m actively considering which pair to start now - Christmas wool or chunky?! I’m probably to knit up a pair of Christmas socks to be fair, but I am also mindful that chunky, worsted or DK wool knits up a really quick pair of socks and I have just had to throw out EVERYTHING in my sock drawer due to the fungal infection currently being treated (although I did treat my existing hand knit socks with a fungal treatment and disinfectant rinse, so I have hopes I might have saved them). I have also just been devouring a new sock knitting book I treated myself to called The Sock Knitting Bible by Lynne Rowe (bought in paperback, following the customer reviews) and you can find this here and have been watching many videos on YouTube about German short row heels and also how to modify them for larger insteps. I still have some maths and swatching to do, but I am grimly determined to find the right recipe for me. I’m also feeling confident I can move to GSR heels proper, aka Boomerang heels, as I now know how to create double stitches. 

Here’s the recent completion of projects, less the poncho as I don’t have a model for it. Happy weekend and peace, out.

Life on Hold. Again. And Again. And Again.

 I think the absolute worst thing about living with Long Covid is the fact that it is so unpredictable and that you cannot catch a break; I distrust the days where I feel I have energy. This is because even if I pace myself well, chances are I am cruising for a crash. I don’t know why. I probably should have put off an impromptu visit yesterday, given I had a LOOOONG set of MRI scans on Monday, but hey ho, it is what it is.

This means progress on that short cloak and re-patterning the regency short stays (even fan-lacing the new ones) has halted, as has the rejig of the petticoat, as well as the ongoing plan for a new regency dress (that’s more 1790s-1805 in design. Sort of). 

I have done a LOT of knitting though. I’ve finished two cardigans for cousins’s babies (cursing the fact there’s now ANOTHER one in the same family line. Not really, but I feel I must knit), knitted up a sweater which, despite my following instructions, does NOT look like it will fit a 9 y.o. - which led to the rushed buying of some expensive wool (in the sale!) to knit up a pair of FANTASTIC fox socks, complete with ears and bad embroidery for said 9 y.o. This meant that I could finally get on and knit myself a pair of winter thick socks ahead of the impending sad event that is the disposal of my entire sock wardrobe due to the sodding fungal nail infection that took hold following Covid. Oh yes. Everything’s gotta go and I get to disinfect my shoes every time as well. New slippers, everything. I also completed a pair of leggings for myself, forgetting my rule of using a smaller set of needles to handle my crap tension, so I may undo the top and reknit several rows with a) double rib and b) needles at least two sizes smaller. They’re being held up with two garters made of very cheap elastic and it’s now a long term plan to design my own pair and I have IDEAS. 

So this morning I won’t be doing my singing thing, as that leaves me tired and I also need to do SOMETHING with our Change petition, which is a campaign for key workers who caught covid, developing Long Covid (as a result of their jobs) get compensation. The recent news release of the IIAC makes it really hard for people to actually get Industrial Injury Benefit, unfortunately, plus a lot of us are getting turned down for pensions too. 

I am trying not to despair. I’m looking at the towel I want to get finished that’s been sat on a needle for two years. I’m planning to do the 13 row pattern repeat, one block a day. If I’m lucky, this means it will be finished next week. 

So, couple of phone calls to make, explaining I can’t accommodate either the costs or impact of travel and can we please do either video or more local appointments, pretty please, with cherries on top. 

Sigh. 

Peace, out.

PS I cannot add photos, due to there not being enough disk space. Sorry and I’ll try and post the, on the blog later on. 

Short Cloaks, Politics and Long Covid

 Look, if by now you haven’t figured that Long Covid gets a mention almost every time, I’m going to think you don’t actually know me 😁.

Since I last posted, I’ve taken arrival of a couple of patterns (one of which I Had when finishing the short stays) and I’m also planning on changing that lacing up to fan lacing, per Kleidung am 1800. I will also change the pattern a little too: I think I can do it with fewer pieces and if I do decide that I want to make them even shorter (so more like a bra), that will take some thought. 

I have been reading one of my other favourite costume online resources: www.marquise.de which is a brilliant resource for historical costume and particularly the 18th century. One of the things it has a description of patterning is a mantelet, or short cape. There are also detailed grid patterns and chapters on this and the more familiar long hooded cloak in Costume Close-Up - yet another part of my historical costuming p0rn collection. 

I have a long red cloak, sized up from Costume Close Up, but it never really worked as I picked the wrong kind of wool for it (you need a broadcloth that’s fulled, so it doesn’t fray really) and it sheds, but I am still pretty proud of it, even if I never got around to whipping the seams down lightly. I despaired over patterning it, until I realised that I just needed to pattern the cut-outs and hood; the rest was about precise measurements and use of a chalk pencil attached to a string (really). I also learned I need to position the arm slits a bit lower for my height, but it’s remarkably warm really and great for Red Riding Hood costumes. I also have a short cape that I got from Jas Townsend, which is black, lined and has no hood. I need me a hood. They used to be a lot cheaper (and I always regretted not buying the long, red cloak when it was cheaper). So something I have coveted for a long time is a short cloak with a hood. I decided to go with something that’s not strictly historically accurate and make a modified mantelet. The mantelet is a short cloak commonly made out of lighter materials, but it does have a hood. I have a piece of brown wool I bought specifically for the purpose and I think it doesn’t fray too badly. I looked at Costume Close-Up and my two other sources and then spent an AGE figuring out what an ell was in measurement online. This may have been a mistake: The number of regional variations nearly ended me. I also realised I could use my existing neck piece cutout and the larger hood from the longer Costume Close-Up cloak, so these were my starting points. I was also pretty specific about the style - both Marquise and the book have the detailed period drawing showing the rough outline of the mantelet body pattern piece. I decided that the best plan was to take some measurements: back neck to waist, front neck to waist and side neck to elbow and then plot these onto my usual paper. I placed the side measurement roughly half way between the front and back measurements. I also took an approximate circumference measurement too. Once I’d plotted those measurements (adding to include a seam allowance at the neck: I am hoping I can either bind or leave raw the lower edge. The hood will have a lining), I then roughly sketched out the shape I wanted, similar to the cutting diagrams. This is half the pattern, as it will be cut with fabric on the fold for the body and, hopefully, the hood as well, but piecing is period correct. I’m hoping to get this cut out in the coming weeks, but not this week and I promise I’ll start taking some photos of everything once I do and posting them, so you can get an idea of what I have done. Not this week however. This week has one online AGM,  two phone appointments, one singing long Covid thing and a hospital appointment and then my surrogate nerfling will be here for cake pop and Halloween nonsense on Friday. I am so, so excited about this. (It’s always time to watch Hocus Pocus and this year there’s TWO films to watch!). I taught the nerfling to bake (seriously, she came over two christmases for baking-related shenanigans, decorated things and for her 6th birthday, all she wanted was to see one specific pal and bake with me *melts*). 

Anyway, chances of feeling like the unalived for the first week in November are high.

In other news, politically speaking, I am convinced that tofu (credit Chris Bryant) or the wet lettuce (thank you Daily Star for that online feed 🤣) would make a better PM and I am not surprised that BoJo is Back (or trying to be). Please no to all of this. In other political news, I accidentally got returned unopposed to a seat on a British political party federal council and am a candidate for another seat on it (don’t ask) AND the board as well. I only stood because I was so angry that bigots are trying to hijack the party. Anyway, this is a new body and I have the distinction of being the first non-binary, disabled, pansexual elected to this body, amongst other demographics, but I am whiter than white compared to other candidates in terms of skin colour. 

I have also been working hard with my tremendous friends and surrogate sisters, R & S, to start a campaign for compensation and pension scheme for U.K. key workers with long covid, who likely caught it as a result of their work. It’s a huge issue, to be honest and given nearly three years since the pandemic began, it’s not good enough that our governments have done absolutely nothing to support those of us too disabled to work. If you want to read more about it, it’s on the Change website. 

In terms of the Long Covid, I’m much the same as ever, needing the two hour rest periods or naps a day. My cats are fascinated by my new heated throw and I’m becoming ever-parsimonious over power usage. I should update this soon, but likely not for a couple of weeks. I do, however, update my Tiktok quite regularly (my current biggest achievement is learning how to Green Screen. I am so proud of my 47 y.o. Self). I’m perfectlyimperfect7505 over there.

Peace, out.

Long Covid - What Else Is New?

 Today I wish I was writing a happier or more constructive post. This isn’t it. 

I had a check in with my boss, who’s just back at work after THE VIRUS. Funnily enough, they’re not feeling right. I advised Berocca, pacing and lots of rest. Not overdoing it.

Anyhoo, I explained how the referral to neurology went awry for some reason, so I’m not where I should be on the waiting list. Also explained how my unreliable meat-sack now has cysts where I don’t want them. And my immune system is so shot to pieces I have a nasty fungal nail infection, with bonus gammy toe issue (goodbye £50 for private podiatry because 18 months after referral to the NHS podiatry for a different foot problem, I STILL don’t have an appointment). Then there’s the obvious cognitive problems after just a couple of hours of doing anything. And the fact I can’t stand up for more than 10 minutes (I am in an office job, but still). The clinical trial I am in - the only one I found that I qualify for - is lifestyle intervention and I feel much more fatigued on it. That could also be the medication for the fungal infection. 

I don’t know what to do. I keep taking my supplements and, to be honest, I’m going to start with low res exercise, even tho everyone has told me not to. At the current time, I just can’t see myself ever getting back to work full time as a nurse. I see myself losing my job and therefore my home in a matter of months. This fear and stress is ever-present and it is NOT doing me any good. 

While I can’t talk about it, this feeling of having my back to the wall did prompt me, following some counselling, to deal with my anger around how I got infected more constructively and, with my union’s assistance, I’m now looking into it. I cannot say more than that. I literally feel like it’s similar to Luke Skywalker being the Last Hope for the Galaxy. 

I am going to be constructive, speaking to friends about what else we can do to raise awareness of the situation Key Workers are in: Governments utterly failed us during the pandemic, putting many of us at unacceptable risk. Now they look like they’re ignoring us, hoping we go away and many are finding themselves facing the ableist attitude of “If you can’t keep up with everyone else, then out the door you go”. 

I’ll keep you as posted as I can about the things I can, but rest assured that the brain fog is back, plus the tachycardia and fatigue, as well as interrupted sleep never ends. 

Travel with Disability or Chronic Illness - addendum

 Doing the podcast today with Julie Taylor (you can find it on Spotify, Amazon, Apple, buzzsprout, Google - Living With Long Covid - Julie Taylor), I realised I had not added some pro tips in relation to things you can take with you that make a HUGE difference. 

1) A dark (think black) umbrella. Useful for rain and even more useful as an impromptu parasol as it gives you INSTANT shade. 

2) If you’re bothered by pressure changes on aircraft, get some specialist earplugs, from a brand like Earplanes - not sponsored. There’s a few different kinds and sizes. A quick search on Amazon or Google will bring some up. Trust me when I say they’re worth every penny. 

3) Deongestants also help with comfort, but ask a pharmacist. These can make the difference, especially if you caught a cold, between pain (and almost screaming due to the pressure changes) and bursting an eardrum (yes, it’s happened) or close to it

4) Good flight socks. I LOVE TRTL - again, not sponsored. 

5) a foot hammock. Really. Look these up on Amazon. You want one that’s going to stay flat. They hook over the tray table and can be adjusted, helping you relax on a flight. 

6) Noise cancelling headphones or earbuds. The earbuds take up less space and can be used on a flight. I’ve used both Flare and Loop. Again not sponsored, but I LOVE the latter for comfort. There’s usually some for sleep and noise cancelling, so think about what you like. 

Those are pretty much my pro tips for things to consider taking with you, but if you’re thinking medication, ALWAYS seek advice from your GP or pharmacist ESPECIALLY if you take regular medication. 

I’m planning a check list for things to remember to do before traveling, which will be announced here and also on my Ko-Fi me when it’s done. I also have a new Facebook page - Perfectly Imperfect - my new space for advocacy. 

Stays, Completed!

 I’m going to admit here that there were not a lot of pictures taken, as I got distracted while finishing up my stays. I also learned two things when they were done: 1) Lacing on your own with Long Covid is exhausting and 2) I probably should have made them a little shorter. Still, that’s for next time, when I make some overall changes and create a new pattern. I’m very glad I made the changes I did and as you can see in the photos, they worked REALLY well.

I have not been particularly well over the last couple of weeks, as a cold completely floored me and I also have a gammy toe. This is being seen to by professionals later this week. I’ve also got a few appointments, a podcast recording and so on. 

Anyway… As predicted, I had measured too long on the stays, which is OK as I plan to use these on the next variant. I also found and ordered a narrower custom busk, which HAS added to the cost. I am still dithering over ordering the Red Threaded regency stays pattern and also self patterning up a more transitional set. I finally downloaded the Black Snail spencer pattern and am eyeing up my navy cotton sateen dodgy pillowcases as potential fabric stash. What? You make do with what you’ve got. I was planning on sending the whole king size duvet set, plus four pillowcases and the flat sheet to the charity shop anyway, so I might as well use it for costuming and wardrobe projects instead. With all the seam unpicking finally done, I will also be able to get on with my new dress project, which I think will take a bit of pattern adjustment and mock-up for the front at least. Plus I really have to deal with my shoulder issues. They’re NARROW. I also took some measurements over my regency stays and, as I couldn’t resist prancing around in it, my Regency P&P Lizzy Dress (coveted since 1995). I have even had both petticoats on to decide where to fix them up. 

I did put too many eyelets in I think, but on the plus side I suspect this means I might be able to do a variety of lacing styles, including spiral. The current plan is to cut long lengths of twill tape and convert it to fan lacing, to make it super easy to get in and out of. As a result, I re-laced the stays, using about half the eyelets and it’s now much easier to do myself, giving the same support. The Gravity Devices work very well, so I’m going to continue to use my original plan and secure them in place with at least one safety pin, as they could possibly fall out without something to hold them in place during activity. I learned THAT from the loss of both my Georgian/regency garters at the Fringe a few years ago. 

Anyway, without further ado, here’s the photo collection (which will be added to the usual gallery over on Pages). Enjoy, while I remind myself to take all my meds, supplements and neck another cup of coffee! The first pic is me properly dressed in all four layers - that petticoat really makes a difference when it comes to the bodice.

Travel With Chronic Illness or Disability

 A friend of mine with Long Covid recently went abroad on holiday and before she left, she and I had a chat about things she needed to consider before leaving. Julie runs her own podcast, so she and I are going to do an episode on this, because we both thought it might be helpful, but I did think it might be useful to jot down some notes, in case anyone wanted to look at them later. This advice is over and above any else, for example visas and the like. 

Being disabled or having a chronic illness does not mean you cannot travel. In fact, you’ll probably find that your GP recommends it, as getting away for a break does everyone good. That said, you will need to think about anything that sets off your conditions: For example, if you’re allergic to sunlight or heat/humidity triggers symptoms, you might need to think about where you’re going or at least how you’re going to manage it. 

Here follows some general advice about this - it’s broken down into separate sections: Before You Go, While You Are Travelling, While You Are There and After You’re Home. 

My first and most important point is that you absolutely MUST think about time to recover from your journey, both outward and return journeys. If you are working, I generally recommend starting and ending leave in the middle of the week, so that it’s not such a rude shock when you go back to work! You might also find that this is helpful in respect of slightly cheaper travel options too, but if you’ve got kids, this might not be possible. Also, especially if you have mobility issues, think about how accessible overall the place you’re going is. It’s no fun to discover your hotel has no elevator, for example, or a lot of stairs outside etc.

Before You Go

1) Book Special Assistance. Whether or not your condition is hidden or not, whether it’s intellectual or not, Assistance (walking or wheelchair) is exceptionally useful at the airport. Even if you do not use a wheelchair, remember that airports/stations are HUGE and it’s easy to get tired very quickly. You will be prioritised through passport control and security as well. Not having to stand in long lines is fantastic. A special note here is to organise this BEFORE you go: You might book your flight with one provider, but if they use partner airlines/companies, you will have to contact each company separately, for both outward and return journeys. Especially if you are changing planes. You can do this by sending one email with your flight(s)/train etc details to all the email addresses at once. The benefit of that is that each company should then know. The downside is one company might assume another is doing all the organising. I would recommend chasing each company up if you do not have proper confirmation of arrangements. NOTE: Special assistance usually requires you to arrive at the airport well ahead of time. Plan for this (and see my point about lounge access).

1a) If you have any dietary requirements, now is the time to speak to the airline. You may be able to access (but might have to pay for) pre-booked meals, which might be important if you have specific dietary requirements. Bear in mind your preferred meal might not be available on the flight. 

1b) Definitely think about where the loos are and leg room when you’re booking. It’s better to pay for a pre-assigned seat than get randomly assigned one that’s completely unsuitable. 

2) Contact the resort and/or any places of interest/theme parks etc before you go and ask them what arrangements are in place to support disabled or chronically ill people. Ask them what evidence they require. They will usually give you detailed information about the support they give. Some places may give discounted entry or free carer tickets, but this is likely to vary. In theme parks, on presentation of the correct evidence, you may find you get special access to rides and so on. They will normally give you instructions on what to do on arrival. Some theme parks also provide wheelchairs and other mobility aids for a deposit - check this out before arrival so you know what you might need to take and what you can leave behind. It’s also a good idea to check about general accessibility, eg how much is flat, what places are stair access and so on. 

3) Check the entry requirements of any country you are entering. This is especially important if you are on medication as many countries have strict restrictions on what you can take with you. Most will allow you to bring in what you need for your trip, but no more. Some countries will not allow some medications under any circumstances. Check first. The country’s embassy website is normally the first place to check, but if you cannot find the info you’re looking for, it is important to email them and ask. You don’t have to give a medical history, but if you’re on anything like sedative or opiate medication, you should do this. It’s better to be honest about your medication. I’ve generally found that the most contentious medications are things like antidepressants, painkillers (especially opiates) and things like benzodiazepines. It’s better to be safe and list everything when asking for advice. You should ask for this information to be treated confidentially.

3a) Medication usually has to be carried in or with its original packaging. If it comes in blister packs in cardboard, my pro tip is to take what you need for the journey + one or two days and keep it alongside the flattened box. If it comes in a tub, I’d strongly suggest speaking to a pharmacist, as they might be able to sort you out smaller tubs etc for travel. Figuring out I could flatten the cardboard boxes has saved me SO MUCH SPACE in hand luggage! 

4) Gather your evidence in advance. You will most likely find that you’ll need some kind of evidence for airlines, train companies, resorts and the like. You will definitely need this for taking medication to many countries. In my experience, although there is a charge for this, the best thing is to get a letter from your GP. On it, ask for your conditions and medications you take to be listed. Bear in mind that there is usually a time frame travel companies, resorts etc will accept, even if it’s just for conditions, so make sure you are aware of that. Some countries will ALSO require you to have a prescription with you, detailing the drugs, but your GP should be able to issue this (note: this isn’t normally the bit with what repeats you are on. It’s the full, two page thing you’d normally take to the pharmacy). I would always keep this safe and scan a copy of it. Yes, it’s likely to cost you, but this is part of the costs of being disabled. 

5) Get travel insurance and be honest when talking to the company. There’s lots out there and yes, it’s likely to cost you more. Depending on if you intend on travelling more than once in a year will determine whether or not a single or multiple trip policy is more cost effective or not. It is VERY important to be completely honest with the company as they are likely to refuse to pay out for something that happens that you’ve not told them about beforehand, barring accidents (and the accident would have to not be related to a pre-existing condition). I always go for the best cover possible. 

6) Considerations for while you are travelling include distance to the departure point - station/airport, time of departure and how long you will be waiting in the airport, as well as what facilities there are there. If you have a ridiculously early flight, rest is important, so staying the night in a hotel or similar IS something to think about, so you’ve got as much rest as possible. If you’re going to be spending a lot of time in the airport/station and don’t have lounge access as part of your ticket price, I would definitely recommend treating yourself, as there’s usually lots of perks, sometimes including showers, drinks etc. this will depend on whether or not there’s a pandemic on though! Be as rested and comfortable as you can.

7) Other things you want to think about are things like earplugs that help with pressurisation for flying, noise cancelling headphones, decent flight socks and if your GP recommends you take any medication to help prevent DVTs etc. if you are travelling economy, you might want to look into something called a “foot hammock”, which you can hook over a tray table and rest your feet on. 

8) Accommodation and Transfers: It is generally a good idea to ask ahead at the time of booking (and follow up) about rooms that suit your needs and any aids you might need. I’ve landed up in a quiet room which requires too much walking to and from. Not fun. Many hotels will also be able to provide some aids or properly accessible rooms. Sorting it out before you go saves headaches (and gives you some clout if things go wrong). I definitely recommend booking any possible transfers between stations/airports and hotels in advance. Check what instructions you need to follow to make sure transport shows up when it should! Another thing I have become a huge fan of is inclusive resorts or those where you can buy a meal plan of some kind. Again, if you’ve got dietary needs, contact the resort/hotel etc beforehand.

9) Mobility Aids - I am going to come right out and say this. Friends of mine who are wheelchair users have had a fairly awful time of it, whether it’s damage, loss or even airlines using their aids for other people. You can buy specialist cases to try and mitigate this, but they’re pricy. I’m lucky enough to be able to get away with a stick, so I carry a folding one. You can even buy folding crutches. I mind less about airlines taking my crutches from me when I board an aircraft to store - they’re pretty robust. I also tend to travel to places where I will be staying with friends, so the likelihood of my being able to access a “borrowed” rollator is much higher (it’s already in place for a forthcoming trip to Portland in the next year), although mine does actually fold right down and can go in one of my duffel bags. 

While You Are Travelling

1) Always put your medication in your hand luggage. All of it. Keep it with any paperwork (see above) you need. Another aspect of travelling on meds is that you usually have to have the medication in its normal container. My pro tip is to take only what you need and then flatten the packaging (if possible). This works fine if you’ve got blister packs, not so much with tubs. See above. Make a note of any time difference adjustments you will need to make. 

2) Keep well hydrated. Avoid fizzy drinks if you’re flying. 

3) have some sweets to hand. I like the hard kind and don’t leave home without ginger candy of some kind, but that’s because it’s good for flying and nausea. 

4) Dress comfortably, especially shoes and carry a large enough scarf or shawl that covers your top half. They take up little space and are useful on long flights. Even relatively lightweight. A pashmina type works very well. 

5) Let your crew attendants know about any help you might need. They will be aware you’re on board. This will also prove useful at your destination, when you’re waiting for special assistance. If you find you are having any issues, especially with unsympathetic special assistance (oh yeah, that’s happened to me), the crew can be amazing. There is a reason I always buy something for flight attendants if I’m going on a long haul flight - it’s because one Irish airline were amazingly supportive after I was let down badly by Special Assistance at my destination one time. 

6) Be prepared; for delays, for boredom. My minimum in my hand luggage is always a wipe for my face, moisturiser, toothbrush and toothpaste, lip balm, comb and deodorant. Plus spare (under)pants and socks. I don’t travel without my iPad, phone and charger and the relevant travel plug etc. plus notepad and pen and medication, obvs. If you need things like a stick for mobility consider packing a folding one. Also consider weather - if it’s going to be outrageously hot or wet at your destination, be prepared. I definitely recommend a black or dark coloured umbrella (useful in rain, doubles as a parasol). 

While You Are There

1) Try and make a plan for what you want to do and definitely look into planned excursions, just be careful what they involve. I enjoy city tours on buses, as I don’t have to walk, get to see lots and if I do have the energy, can choose to get on and off some to go into museums etc. Going to a theme park? See my point in Before You Go. 

2) Don’t forget to rest. On one trip to Turkey, because my sleep was completely awry, I was usually up with the larks but then would have a good nap late morning and early evening, if I didn’t have any particular plans. I also, on medical advice, spent a lot more time reading and resting by the pool than I ever have before. 

3) Take into account any possible time difference. Check out advice on how to manage this online. Depending on the direction of travel will affect you on different legs. I live in the U.K. and if I’m travelling to the US etc, I’m usually fine on the outward leg and not so good on the return leg. If I’m adding hours, ie heading to Turkey etc, I’m usually not good on the outward leg, better on the return. That said, as I absolutely cannot be up after midnight anymore, this makes things more complicated. 

4) Don’t plan to do anything the first day. At least. Use this to recover from your journey. If you are planning on doing anything, make sure it’s relatively close to your accommodation. 

5) If you are unlucky enough to need some kind of medical support while away, be sure to call your insurance company first and ask for their assistance. Trust me when I say that it’s not like simply calling an ambulance or even showing up at any hospital overseas. I worked in Spain and having to make this point to my customers - they they needed to call their insurance line unless it was literally life or death (in which case, call an ambulance) or face excess costs. If you attend the wrong doctor or the wrong hospital, you might be left liable for full costs. It is always worth checking the small print on your policy before you leave. The policy will also detail what they will pay for direct and what you might have to pay for and claim back (or not).

Obviously, your return journey is the same as before, but I ALWAYS suggest a call or email to the airline etc about special assistance for the return leg. 

After You’re Home

1) Make sure you’ve allowed yourself enough time to recover. You’ll know yourself best and it’s a good idea to factor this into your annual leave, if you’re working. If a time difference is involved, a couple of days minimum is going to be needed. 

2) Rest, rest, rest and try and get your sleep back to normal as soon as possible. 

3) Hydrate

4) if you feel it’s warranted, say thanks to people who supported you. Honestly, people do like feedback. If something went wrong, provide feedback. Positive Feedback is actually useful to people’s employment files. Like I’ve said before, one Irish airline was so amazing I’ve used them ever since for long haul to specific places and I always email them if someone went above and beyond, as well as take a little something for the crew & attendants on each flight. 

5) Check what plans you have once home and adjust them as needed. Listen to your body. 

Unfortunate Downsides

There is no point in denying this: Friends of mine with disabilities etc have had a horrible time when travelling. For the most part it’s arranged special assistance that has not been in place where and when it needs to be. I have had a horrible time of it myself, being treated appallingly at Dulles in Washington on arrival after a long flight and refusal to provide me with the assistance I needed. I also know friends who have had mobility aids damaged. It is something that you need to keep in mind. Vastly unfair, but the world is not particularly accessible.  You can travel, but you need to put the energy into planning with military precision and also accepting, if you have a fluctuating condition, that you might have to change plans at short notice and that this might cause problems, such as if you have tickets and can’t change them. But go! 

Special mention to Aer Lingus, whose flight crew found me sobbing in arrivals after I was denied special assistance in Dulles on the grounds I could walk. They walked me through to baggage and post-arrival security and made a formal complaint about everyone who had been absolutely awful to an autistic person. This is why I tend to fly with them and always take something for the crew. These days, I can’t actually walk far, so it’s wheelchair assistance or I don’t go. 

I hope that’s been a long, but useful, blog post on travelling with a disability or chronic illness. It’s based on my own and others’ experiences. 

PS Forthcoming post about the finishing of my regency stays!