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!
