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Don’t expect this to be one of those “plan ahead for your international long-haul flight, try not to see too many amazing attractions in one day” kind of posts. This post is for those spoonies who can barely make it 1 hour out of the house, let alone travelling to another town; for whom a few hundred km’s may as well be around the world. (Toni Bernhard has an excellent article about how minor holidays become massive trips with chronic illness on Psychology Today.)

These are my tips for surviving a short yet major (for me) trip to Geelong (2 hours away), which would have been a destination for a fun day out before I fell ill. If you’ve been reading my blog recently, you’d know I didn’t cope that well and am paying for it dearly now, but if I hadn’t planned ahead and made accomodations, I wouldn’t have made it through the week at all.

“Geelong, Geelong it’s a hell of a town: the schoolyard’s up and the shopping mall’s down.”

Plan ahead

Well, duh. But like I said, chronic illness complicates things, and a short stay which would have been the subject of a night’s quick preparation in the past became something which required several weeks’ (months?) planning with ME/CFS.

Planning ahead helps you to consider the conditions: what will the weather be like? Do I have medical appointments that week (month)? And it also gives you plenty of prep time to pack and gather the supplies you may need (such as extra scripts, booking mobility devices etc).

Choose your accomodation

This is vital for staying away as a spoonie. It’s no good going away only to discover your hotel has a flight of stairs to your room that you can’t climb! Luckily, if you go online you can take a good look at photos of potential accomodation, read descriptions and reviews, and contact owners with any questions. (How did people book accomodation before the internet?)

Aspects to consider: how accessible is the accomodation (both getting to it, and around it)? Where is it located (if you have noise sensitivities, the heart of the city might not be a great choice)? Does it have heating and cooling facilities? What is the bathroom like (because there’s no fucking way I could climb into a shower bath)?

Shower bath: fuck no. Pack over time

It occurred to me shortly after booking that there was no way I could pack the night, or even few days before, and still have the energy to get in the car to leave. So I decided to choose a suitcase and leave it on my bedroom floor for at least a month beforehand, adding to it as I went (then ticking it off my checklist). This conserved vital energy for the holiday itself.

Acquire “travel duplicates”

I’m aware this is not feasible for everyone, financially or practically, but it’s a strategy that made a big difference in my ability to go away. If I was to pack over time as I mentioned above, I needed to have doubles of items that I use every day, so I could pack some and keep using others.

Not even joking, this suitcase stayed in my bedroom for at least a month while I packed. (It was only 2.4kg and I scored it on special in store.)

To that end, I bought extras of cheap items just for travel that could stay in my suitcase indefinitely (underwear, extra pair of PJs, wipes and other toiletries) and prepared minis/decants of other items I wished to bring (shampoo, conditioner, moisturiser etc in squeeze bottles, single sheets of medication in spare empty packets). That way, I didn’t have to rely on unpacking when I came home to use what I needed.

Consider your strength (and accomodate for it)

If you’re a spoonie, you’re probably already well aware of what you are physically capable of.* It’s something you need to consider even more carefully when travelling. For example, how heavy is your suitcase, and can you carry/drag it when fully packed? Do you have the dexterity to operate travel containers of toiletries? (Turns out I can’t, and bought cute lil silicone squeeze bottles to hold my shampoo etc.)

So. Damn. Cute. (Available from Amazon.com.au.)

The same goes for mobility. If you’re not sure you can navigate your travel destination, plan ahead to ensure you have the mobility device(s) you need to enjoy your holiday as best you can. Many shopping centres and other venues, such as beaches and zoos, have mobility scooters for hire.

Beep beep, motherfuckers. Make your accomodation accessible

So you’ve found the perfect place, but it’s missing a shower rail. Or you can’t guarantee that any bed will suit your finicky body. What’s a spoonie to do? Bring your own, of course.

My body won’t accept hard mattresses – not cos I’m picky about comfort or will have a bad night’s sleep, but because “resting” on a hard surface isn’t rest at all, it’s physical exertion which will inevitably lead to an ME crash. So I brought along a cheap memory foam mattress topper from eBay (I’ve heard Amazon are a good source for the same in the US).

I don’t know what is going on here but it was the best picture I could find of my ridiculously large mattress topper. From Oz Auction on eBay.

We initially thought our chosen accomodation didn’t have a shower rail, so along came a suction-cup rail, also from eBay. (Thank goodness we didn’t have to use it, as I’m not convinced of the weight-baring capabilities of the suction.) And of course, I had to bring my trusty shower chair, which makes bathing myself actually possible. (This was rather bulky in the car, so if you’ve got a good source for foldable shower chairs, hit me up.)

I’ve shared this picture before, and I’ll share it again. Shower chair is love, shower chair is life. Simplify your routine

Do I like wearing makeup? Fuck yeh. Would I have the energy to apply a full face, go out in a city, come home and remove it (with extra toiletries I would have had to pack)? Fuck no.

With all the energy required for being in a strange place, doing more for myself, and cramming more activity into one week than I’d usually achieve in a month, I wouldn’t even have the energy to wash my face properly, let alone deal with makeup. So I compromised and brought micellar wipes for everyday cleansing, my usual lightweight sunscreen, and a lippie or two if I wanted to feel more colourful.**

You could apply this strategy to near everything – bringing preprepared meals or ordering take out instead of cooking or dining out, packing clothes which require minimal effort to don and remove, relying on wipes if you may not have the spoons for bathing. As you’ll be expending so much energy already, any cutbacks in other areas will only help you get through the day more easily, with less payback.

Plan time for rest

This is probably already #1 on your list anyway, but it bears emphasising. As a spoonie, you might be able to achieve 1/2, 1/5, 1/10 or 1/100 of what a healthy person can, but you will always need to do less and rest more in between.

For instance, I knew the car trip there and back would be brutal, so I scheduled those 2 days just for travel and rest. Then I elected to loosely plan 1-2 activities for the other 3 days, with the possibility of cancelling and resting if need be. The remainder of the time: rest.

I think we all know one of those things was MYER. Know that it’s ok to feel sick

Before I left, I was very worried that I would be so sick when I arrived in Geelong that all I’d be able to do was lie in bed (and possibly groan a lot). Mum reassured me that it was ok to be sick on holiday – it just means you are sick in another place.

Well, I could both do more and felt a lot worse than I envisaged, but being prepared for a total shitstorm helped me deal with what was to come (in at least some small way).

What are your tips for travel, fellow spoonies?

*In a broad sense, that is. Specifically? That shit will still fuck you up on any given day without warning.

**I really took up makeup again as a hobby for those days when I’m too ill to go out or sit up at the sewing machine, but still have enough strength to sit upright and do something. Applying and removing makeup = 1 day’s worth of energy.

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If you are housebound/bedbound due to chronic illness, you will be well aware of the limitations placed on yourself and others like you in accessing adequate healthcare. However, it is an issue that largely goes unnoticed, as the medical system and broader society either do not want to know or choose not to care about people in this situation.

It has taken a housebound/bedbound person herself to place a spotlight on the lack of medical care available to those who need it most. Ricky Buchanan, who has been bedridden and/or homebound for 20 years due to a combination of rare illnesses, wrote a report which canvasses the broad range of factors which influence the level of care a housebound/bedbound person receives.

Entitled “Just Invisible”- Medical Access Issues For Homebound/Bedridden Persons, this report may well be the first of its kind. I’d encourage anyone reading to hop over to Ricky’s website and take a look – it’s a shocking and at times confronting read, revealing the abject failure of the medical system in addressing the needs of those most desperately requiring medical help.

Ricky Buchanan, author of the report, website builder, and all-around fantastic person.

In Ricky’s words:

“The Problem

If you are homebound/bedridden and you live in the community, then the healthcare system treats you as if you do not exist.

People who are homebound and/or bedridden have extensive and systemic problems with accessing the medical healthcare system, including access to GPs, medical professionals, hospital systems and allied health. If you don’t turn up you are assumed not to need or want the service.

This is not like access to public transport, where we have excellent anti-discrimination laws but the government keeps awarding exceptions the rules.

This is not like access to websites, where there are excellent guidelines about how to be accessible but people just don’t follow them.

This problem is that the entire medical system has been designed and based around physical attendance, and that it treats non-attendance almost exclusively as a problem of patient noncompliance. There are a few small tweaks to make exceptions for people in rural and remote areas, and some even smaller tweaks for people who live in aged care, but in the main if you are homebound/bedridden and you live in the community, then the healthcare system treats you as if you do not exist and should not exist.

In the cases where a homebound/bedridden person is well accommodated, it is not because the healthcare system is working well. It is almost exclusively because someone has gone deliberately out of their way to help, and they will probably not be adequately compensated by Medicare or any other government system for doing so.

The Report

This extensive report details many of the problems faced by homebound/bedridden people trying to access the medical system, why the NDIS won’t fix these issues, and what governments and policy-makers need to do to begin to level the playing field.”

Ricky’s full report, executive summary and press releases can be accessed from her website, Not Done Living.

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May is ME Awareness Month (along with literally every other illness, it seems). I’m too despondent to write something new, so I figured I’d recap my top 6 posts regarding ME/CFS and chronic illness in general.

1. A Dummies’ Guide to ME/CFS

I think I started off my blog with this rather ambitious 5-part series about ME/CFS. Besides more recent research findings, it covers near everything I know about the illness. If you want a shorter summary, try my article for MamaMia, “Seven things you probably don’t know about chronic fatigue syndrome.”

2. Chronic Fatigue vs “Chronic Fatigue Syndrome” (ME) Whitney Dafoe, one of the many faces of ME. From healthy travel photographer to bedridden and paralysed.

I wrote this for the May 12 Blog Bomb last year, and it’s still relevant – the conflation of a generalised sense of fatigue and the specific illness ME/CFS does a great deal of damage to the ME/CFS community as a whole. Check out my article to read the differentiation between the two.

3. Betrayed – a brief summary of the PACE trial Artwork by Beth Raven

I daresay there has been no greater harm done to the ME/CFS community than that inflicted by the PACE trail, an abysmal betrayal of both science and chronically ill people which led to potentially harmful interventions being recommended to ME/CFS patients for years.

Last year, raw data from the trial was finally revealed in a prolonged court case, and I wrote about the duplicitousness, cherry picking and biases which promoted this farce of a study to the pages of The Lancet.

4. Handy responses to commonly heard phrases

After that heavy reading, I feel like some laughs are in order (and yes, I’m THAT person who laughs at their own jokes until they cry). In this post, I give some handy snap backs to the kind of shitty comments chronically ill people hear every day.

5. Six Things You Can Do For Your Chronically Ill Friend Not exiting stage left is one of them.

Sometimes, friends and family of those with chronic illnesses want to help, but don’t exactly know how.* I’ve shared six tips for how to best support the chronically ill people in your life.

 6. On Being “Nice”

You know what I’m sick and tired of (besides being sick and tired)? The expectation that minority groups such as ME/CFS patients should sit in complacent silence while being at best dismissed, and at worst attacked. Spreading awareness is a great start, but a cause was never advanced by being “nice” – let’s start disrupting things and make some noise.

*We’re talking best case scenario here. I’m sure any chronically ill person has a story or two about those who pledged support then did a runner when things got mildly difficult.

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Recently, I did something which I thought impossible. I went away for four nights, for the first time since becoming chronically ill 8 years ago. It was to the closest city: Geelong, 2 hours away, with my mother/carer/also chronically ill buddy. You might be wondering, how the fuck did you do that, Siobhan? I’m as shocked as anyone else! One night I just felt, for the first time well, ever, that I could do it. And by that I mean, do something, get sick, but not get permanently worse (which has been the norm these past 8 years).

It might not have been international travel, but it may as well have for the toll it took on my body.

A quick day trip to Port Fairy (25 mins away!) was my test run, then I threw caution to the wind and booked an airbnb in Geelong! I did, in a way, have the time of my life. I went to Westfield (and more importantly, MYER), got foundation matched and a full face done at MAC, caught up with Jen for some op shopping, and saw my grandfather for the first time in years.

But, in another sense, it was a horrific week. I felt more sick than I have in a long time, and now that I am home, know that the recovery period will be prolonged and brutal. I have done a lot of thinking since on the nature of living with chronic illness, and the impossibility of reconciling feeling so terrible all the time with having any semblance of a good life.

It is hard to say whether I enjoyed myself while away or not. I had fun, I suppose, but not without feeling the excruciating weight of my illness the whole time. When I was not doing an activity I was in bed or the (more comfy) recliner, struggling to breathe, and acutely conscious that I was using up weeks’ worth of energy just existing in this novel environment.

I wrote a post on Instagram recently pondering these sentiments. As Jessica pointed out in her post, as spoonies we just wish to participate in life. But can you participate fully if your illness levels are, “if I was able-bodied, I’d be in an ambulance by now”?*

I see a lot of self-criticism in the chronic illness community about an inability to fully adapt to life with chronic illness, in particular, the pacing required and self-blame to follow if an activity takes more energy than anticipated. This seems unfair. There really is no way to adapt to this life, as it is one without rules or logic.

Perhaps this is why able-bodied people struggle to understand our lives so much. Theirs is not a tank that can run out unexpectedly, be full one day and depleted the next 10, they do not suffer extreme and unexpected consequences for being fool hardy enough to get out of bed and do the grocery shopping.

That is why I was so reluctant to share my plans until they were in action: I dreaded the inevitable remarks about how well I must be. The assumptions that I could do this all along, if I’d just put my mind to it. I have still not told those who I know would use my attempts at normality as evidence that I was Really Faking It All Along.

Check out this thread, y’all.

Perhaps I expected too much from myself: it seemed logical to me that if I could travel 2 hours down the road, then I could surely travel to Melbourne, go to an actual event, or visit a city specialist. I now know the cost was so great that going to Geelong once a year seems like a lofty goal, and that is not a quality of life I’m willing to accept.

It was also quite a shock to discover that, for the most part, my 93-year-old grandfather has a better quality of life and yet better access to care than either I or my mother do; a matter on which I am continuing to reflect.

All these muddled thoughts are part of my considerations upon how I can live a good life with chronic illness. After the blow of the negative results for what was literally the only phase III trial for ME/CFS, ever, I have come to realise that there is no hope for recovery in the near future. The more medical professionals I consult, the more I realise that I am the most knowledgable about my own condition. Therefore, I have to forge out a life for myself, as best I can.

It is overall a positive outcome, I suppose, to do a thing and crash, but not get worse.** That is what I’ve wanted these past 8 years. But it seems a poisoned chalice. My holiday was meant to be an escape, but there really is no escaping chronic illness. So, like many other spoonies, I bumble along, trying to best balance pleasure and payback.

What is “worth it” differs between every person with a chronic illness, as does what is physically possible. I’m still trying to figure these things out for myself, in the ever-changing, always-confusing, and utterly distressing fog that is living with chronic illness. But some days, it would be really fucking handy to have a manual to tell me what to do!

How about you, fellow spoonies? How do you cope with figuring out your limits and abilities? And that feeling of a possibly indefinite, absolutely horrible crash?

*This is probably an apt summary of life with chronic illness, really.

**So far. My body’s a tricky bastard most times.

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Warning: contains GIFs

I went on a knit-sewing session a while back, resulting in my ponte skirt and a couple of long-sleeve tees. I actually meant to blog them together, but the weather has been so offensively hot this Autumn that I’ve had to wait until it cooled down enough that I could wear long sleeves without swooning like a 20s film star.

Or Alba. I’m kinda obsessed with Jane the Virgin right now.

The pattern is the Grainline Hemlock Tee – my fifth and sixth versions, if you’d believe. Like all my previous tops, the shoulder seams were shifted forward 1/2″ to address the symmetry in the pattern that would result in a backwards-sliding top on me.

A wild Patty appeared. Wearing with my self drafted ponte skirt.

I added some length to the body and sleeves, but couldn’t tell you how much – it was really dependant on how much fabric I had then hemmed to my liking. The neckbands were a 5cm strip, pressed in half and basted to fit.

It’s the fabrics that are the stars here, and the Hemlock tee is a perfect vehicle for showcasing all manner of knits. The burgundy stripe was a generous gift from Jen, who has the knack of choosing exactly what I like in fabric. I’m assuming it has some rayon content, as it’s very soft and drapey while still being thick enough for winter wear. It is such a beautiful fabric that I’m excited to wear this winter.

I actually cut and half sewed a Tessuti Mandy Boat Tee from this fabric before remembering exactly why I never wear my other Mandy – the neck is too high and wide to be comfortable, and the excess fabric through the body doesn’t do me any favours. Luckily, there was enough fabric in the body to cut the Hemlock pieces (I wasn’t joking about the volume!), and I had leftover scraps for the sleeves and neckband.

This meant that I didn’t have a lot of wiggle room for adding length. The unhemmed length of the body turned out to be just right, so I trimmed the sleeves to length to match the style.

The red fabric is viscose/elastane jersey that I bought from The Remnant Warehouse some time ago to make a Maria Denmark Kimono Tee. That project was an absolute failure, and the remnants have lingered in my fabric store for some time since. I originally intended to make a sleeveless Hemlock from this fabric, but it was so much nicer than I remembered that I felt it would be a waste to not use as much of it as possible.

I used water-soluble stabiliser under the hems to stop any rippling when zig-zagging (which I tend to rely on when hemming any kind of knit these days – my machine is so prone to stretching them out, walking foot or no).

Let’s just say I’m still getting used to my new phone camera, but the colour of the fabric is closest in this picture.

It’s interesting to observe how variably this pattern performs in different fabrics. In the soft and drapey viscose knits, the neck hangs open and the body drapes more like the pattern photographs. My previous versions in ponte and French terry hung more like sweaters, and the stable cotton like a boxy tee.

After a week of wear, the open (bra strap revealing) neckline on the red version bugged me so much that I donated it to the op shop – shame as it was perfect in every other way. The burgundy fabric was just that more stable to form a closer neck, and I’m sure it will get a lot of wear this winter.

When you realise the gutter has a leak and has been dripping on you this whole time.

The deets:
Pattern: Grainline Hemlock Tee
Pattern details: “The Hemlock is an oversized tee that was designed with knits in mind. This tee is just the right amount of slouchy. With its bracelet length sleeves, dropped shoulder seams, and a hem hits below the hip it’s the perfect comfy top to pair with jeans, skinny leg trousers, shorts, and straight cut skirts!” Available as a free PDF download.
Fabric: 1.6m square soft striped plum knit, gift. Scraps of 150cm wide Sundried Tomato Jersey #752, viscose/elastane, from The Remnant Warehouse.
Other materials: Clear elastic, to stabilise shoulders.
Mods:
– 1/2″ forward head adjustment, same done to sleeve cap
– Lengthened sleeves and body hem somewhat (unsure how much)
– Cut own neckband, 5cm wide (6mm SA), and stretched to fit when sewing

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Even though I’ve been trying to keep up with my blog posts, I haven’t really been sewing as much lately as is usual for me. Sitting at the machine requires a lot more effort than I can muster most days, so my output has slowed considerably. This has led to a rethink of my sewing strategy: I can’t buy a lot of fabric with the guarantee that I will burn through it quickly, so I’ve been taking stock of what I already have and working out what to do with it.

Leopard print matches leopard print, right? That’s my In the Folds Peplum Top, BTW.

A lot has gone on to the op shops, other crafty people I know, or to my friend’s early childhood education centre (those kids have far more creative talent than I do!). Now I’m aiming to sew through the rest before I buy anything new.

This project is essentially a scrap-buster, using leftover ponte from my Mol-nari-oli dress. Spotlight have been producing some fantastic ponte lately – true ponte, viscose/elastane/nylon instead of some horrible poly concoction – so I wanted to use it up instead of tossing it. And what better project to use up ponte scraps than a knit pencil skirt?

Usually I like to rely on the expertise of professionally trained pattern drafters rather than drafting patterns myself, which I neither have the skills nor energy for. But I figured by the time I bought and printed or traced a pattern, I could have drafted and sewn the whole skirt. And honestly, a knit skirt is so simple I figured even I couldn’t cock it up.

Just showing off stripe matching here really.

I relied mainly on this tutorial from Maria Denmark, adding a separate straight waistband instead of elastic which she encases by folding under the waist of the skirt body. This allowed the skirt to sit on my high waist, instead of hip.

The skirt required a little fitting when on, mainly because I dramatically underestimated the length between my waist and full hip and had to redraw that curve. I also inserted 32mm elastic in the waistband (just what I had hanging around) as the weight of the skirt was not adequately held up by the self-waistband alone.

And here. See that CB seam?

I initially went to the effort of drafting a faced walking slit for the centre back seam, to be mitred with a hem of equivalent width, but when I tried it on, I found the slit unnecessary and the length perfect as is. So I trimmed the facing, sewed up the CB seam and just wore it unhemmed!

Here’s how I did the vent, for anyone wondering. It’s more of a faced slit, with 2.5cm turnback matching the hem, which would be metered and topstitched. Traditional vents don’t seem to go so well in knits (see: Colette Mabel Skirt).

Like I mentioned above, I don’t have a lot of faith in my drafting abilities, so I was pleasantly surprised when this skirt turned out exactly as I’d anticipated. I’m sure relying on a tutorial by an experienced pattern drafter didn’t hurt! The best thing about this method IMO, rather than using a drafted knit pencil skirt pattern, is that you can so easily adjust to your liking – eg, by narrowing for a tighter fit, pegging at the hem, adding a vent, or adding a waistband as I did.

Now with added cat.

The deets:
Pattern: Maria Denmark Easy Made to Measure Skirt
Pattern details: Straight knit skirt drafted to measurements.
Fabric: About 1m x 145cm wide scoop buy double knit, black/white stripe, viscose/nylon/elastane, from Spotlight.
Other materials: 32mm elastic.
Mods: Added 38mm wide straight waistband with encased elastic.

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You know when a project looks really different in your head to the final outcome? That’s what happened with my Style Arc Blaire Shirt. I completely misinterpreted the pattern of the fabric and the cut of the shirt, and ended up with an oversized, tropical-style shirt, entirely by accident. And I love it!

The fabric is a cotton voile that I bought at Spotlight a few years back for the princely sum of $6, but it wasn’t until recently that I finally got around to pairing it with the Blaire Shirt pattern. I felt the lightweight fabric would suit the summery style of the Blaire, though due to its weight and opacity I wouldn’t recommend it for the dress variation.

I don’t know what went on with my phone camera but it flipped its shit when I started turning. The colours aren’t particularly representative as a result.

Style Arc is consistently reliable in their draft and I had no problems with the pattern itself. I’ve read some criticise the collar stand for seeming too short, but it’s my understanding the neck is to be eased to the stand (which worked perfectly for me). Due to the cropped style, I added 6cm length in total so I could pair the shirt with mid-rise pants, but I think it would look equally cute as drafted with high-rise jeans or a skirt.

Um….obviously the shirt doesn’t look like that. But I couldn’t resist sharing the cool print on the back.

I did, of course, take issue with the fabric, which I didn’t realise was a border print until I brought it home. And not any old border print, but one which had 3 different, repeating motifs down the selvedge which were not centred, leaving a bit of waste fabric on one side. So I had to be careful to cut each piece in a way that made at least some visual sense.

Thank you, Spotlight.

The pattern has an interesting design element: the bottom half of the shirt is constructed of an overlay, with a sharply curved hem, and a straight-hemmed underlay. Gaps in the waist seam form pockets. As cool as this design feature is, I realised soon after cutting out that the underlay would be really obvious due to the opacity of my fabric, and chose to use insets to fill the side seam curves instead.

This is evident in the tech drawing. The dress has a similar feature with insets that create pockets in the side seam and stabilise the hem.

I must have underestimated how lightweight the fabric was, because my usual choice of one layer of interfacing to stabilise the buttonbands was not quite enough. It won’t make a big deal in the wearability of the shirt, but for a more polished look I’d definitely interface the entire buttonband piece next time (and perhaps the collar and stand facings too).

Otherwise, sewing this shirt was smooth sailing, and I’m glad I finished it with some warm weather still to go. Though if these past few weeks are any indication, summer will last a long while yet!

The deets:
Pattern: Style Arc Blaire Shirt and Dress
Pattern details: “Shirt: Square shaped shirt with rolled cuff and interesting overlay. Dress: Shirt-maker dress shirt tail and inset pockets.” Sizes AU 4-30, available as PDF download or print pattern.
Fabric: 2m x 138cm wide printed voile fern, multi, from Spotlight.
Other materials: Sheerweft interfacing, 8 x 10mm shell buttons, from stash.
Mods: Size 12, shirt variation.
– 1/2″ forward head adjustment (just changed shoulder notch on sleeve cuff rather than redrawing curve)
– Added 3cm length to top and bottom pieces (6cm length total) – added straight to bottom pieces and slashed and spread top pieces at halfway point down waist
– Used insets for side seam hem curve instead of full underlay

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I’m back, with what might be my most spectacular creation so far! It’s a retro-style playsuit for my friend/pin-up, Becca BamBam. Her pinup character is so fabulous I felt it fitting to create something equally fabulous to suit.

The pattern I used is Butterick 6354, a Gertie for Butterick pattern. I haven’t heard good things about her other patterns, but this wasn’t so bad, besides some inefficient construction techniques and an excessive amount of ease for the style (how is a bustier top and wrap going to stay up with 6cm ease?). I chose a smaller size based on flat pattern measurements and added an extra waist snap to the sarong for choice of fit, then it turned out Bec’s measurements I had on file were slightly off, so it ended up fitting perfectly.

The main fabric is a cotton voile from the Spotlight $2/m sale, if you’d believe – I’ve been sewing with these fabrics for at least 18 months and I’ve still got some left! I quickly realised it wouldn’t be supportive enough for a bustier top, so I bought a cheap sheet from the op shop in a lovely matching blue to underline it. I think I achieved this by just laying the fabrics out together and cutting as one, then smoothing out any kinks, machine basting, and trimming any unmatched edges.

Some notes on construction:

  • The pre-covered boning I used (from the op shop mostly I think) was very stiff and had rolled out of shape, so I soaked it in boiling water and pressed it in a magazine stack. The other boning I had from Spotlight was much more obliging, and easily fit into the bias tape casing I made.
  • This sounds obvious now, but I really should have sewn the bodice lining/bodice seam at the bust first, understitched, then sewn the waist seam. The lining wanted to roll out, and this method would have been a lot easier than understitching in a boned tube as I did! (This wasn’t in the instructions.)
  • I couldn’t get the zip facing to look neat by hand, so I finished the overlap side by machine and pulled the bodice right side out through the underlap opening.
  • It was very difficult to find an appropriate open-end zip – most were jacket weight. This is actually an invisible open-end zip, which cost NINE DOLLARS, and was a nightmare to sew in due to the inexplicably thick plastic sections at the base of the zip (I chose to sew it lapped to fit the retro look). My zip insertion is pretty craptacular as a result.
  • The band looks really odd to me – it’s eased onto the bodice and just doesn’t want to sit right. I tacked the band point at CF to help it roll a bit better.
  • Used big snaps rather than buttons for the detachable straps (not photographed), which I felt would keep the strap in place better and be slightly more comfortable.

I would recommend the pattern, with reservation – just make sure you check the finished measurements (printed on the pattern pieces) to make sure you get the size you want.

Bec wore the playsuit to the Ballarat Beat Rockabilly Festival, as you can see in some of these pictures. Doesn’t she and the other contestants look stunning!

The bustier also works paired with a pink satin circle skirt and Elvis.

The deets:
Pattern: Butterick 6354, Misses’/Misses’ Petite Bolero, Bustier, Sarong and Shorts
Pattern details: “Self-lined bolero. Close-fitting, lined, boned bustier has front band and detachable (button) halter strap. Fitted, wrap skirt has pleated right-front, and tie ends. Purchased bias tape to finish waist. Shorts have waistband. C, D: Narrow hem.” Sizes 6-22.
Fabric: 2.5m x 138cm printed voile pretty floral, blue, from Spotlight, light blue polycotton sheet from op shop
Other materials: 12mm grey bias tape, covered and regular boning, both from stash. Birch open ended invisible zip, blue, 18cm, from Spotlight.
Mods:
– Chose slightly smaller size based on generous ease, moved waist snap in
– Underlined bodice
– Finished most of bodice by machine and tacked down CF band to help it lay better
– Used snaps, rather than buttons for strap

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Content warning: suicide, murder

Is it better to be dead than disabled? It might seem a shocking question, but the idea that death is better than disability is one that is promoted all around us, from fictional stories to news reports. It’s certainly a question that journalists grappled with when (clearly) struggling to write about Stephen Hawking’s recent death, in media coverage that can best be described as an “ableist garbage fire.”

It seemed journalists could not help themselves from focusing on Hawking’s disability instead of his work, emphasising that he “overcame” or worked “in spite of”, not with, disability. If they weren’t marvelling at the fact that someone could be successful and disabled, they were reinforcing harmful ableist tropes about Hawking being “freed” from his disability in death, accompanied by apparently touching cartoons of him walking away from his chair, towards the stars.

Putting aside the fact that Hawking did not believe in an afterlife, this depiction offends on the grounds of reinforcing two tired old tropes about disability: that mobility devices are restrictive, and that disability is a fate worse than, and escaped only by, death. These tropes will be no news to disabled people, who spend a lifetime encountering offensively well-meaning comments about wheelchairs being a burden, disability a (metaphorical) death sentence, and cheery quips from able-bodied people about how they couldn’t possibly live like us and would just kill themselves if they were disabled (yes, this happens).

The media coverage of Hawking’s death is equally ignorant and well-intentioned, but only serves to reinforce these tropes and make the lives of disabled people that much harder. Disabled people spend a great deal of time and energy trying to convince others that our lives have value, and we deserve equal participation in society (whether that means using mobility devices, improving public accessibility, or greater funding for services). What we don’t need is to further the implication that our lives and works mean nothing unless we are “freed” from disability.

Another example which is far more blatant in its promotion of eugenics is the movie Me Before You. This unfortunately popular film tells a touching “love story” about a woman who helps a man in a wheelchair kill himself so she can run off with his money. Romantic, no?

Fuck right off, Emilia Clarke. You too, Hunger Games guy.

Slotting comfortably into the genre of “disability snuff films”, Me Before You reinforces a remarkable number of stereotypes about disability. The main character is portrayed as a burden who is so desexualised this apparently “romantic” movie had barely a kiss between its star-crossed leads, and the value of able-bodied lives above disabled ones is made eminently clear in the disturbing finale.

Why their puzzled faces? After all – no offence was meant. Why don’t you get our anger? You kill off the hero because he’s disabled and churn out repetitive cliches about disabled lives that has me reaching for my specially adapted axe. This is just weeks after the Invictus Games and a few months before the Paralympics. Wait – aren’t some of those participants “horribly paralysed”? The messages are horribly mixed. – Penny Pepper, The Guardian

Sam Clafin, an able-bodied actor, plays his quadriplegic character with all the nuance of someone who has never bothered to talk to a disabled person in their life. In fact, the actors are able-bodied, the author of the book upon which the movie is based is able-bodied* and deliberately ignorant of criticism from the disabled community, and the only person with a disability publicly associated with the film, a man whose autobiographical account of quadriplegia which was used in it without his consent, is “angry” about it.

It seems Me Before You serves little purpose other than to make able-bodied people feel better about their lives by comparison, while promoting a dangerous message of self-harm to already at-risk individuals.

#MeBeforeYou Contrary to the views of the non-disabled ppl who made this film we do #LiveBoldly by, y'know, living pic.twitter.com/HvZLp21PnZ

— Nathaniel Gale (@NathanielGale) May 23, 2016

Still not convinced? How about media portrayal of parents who murder their autistic (or otherwise disabled children) as tragic figures who had no other choice. Of course, it is a tragedy when a child is killed, but I would argue that it is not an inevitable-yet-sort-of-sad outcome of having a disabled child.

To untangle ableism in news reports, try to remove the disability from the story and then determine if there is still a story worth telling. If a parent murdered an able-bodied child in cold blood, do you think they would still be portrayed sympathetically? Do you think any other parent who got so sick of their children they decided to kill them would be seen as objects of pity?

There is a lot to discuss about the lack of societal support for parents of children with disabilities – more than I have room to go into today. But suffice to say that the deliberate deaths of disabled children would not be reported as a “mercy killing” were we already not so accustomed to the idea that death is better than disability.

Disabled people experience violence against them at a much higher rate than their able-bodied peers – hardly surprising given the prevalent attitudes I have discussed. In much the same way that casual sexism can ultimately lead to violence against women, the continual devaluation of disabled lives legitimises any harm done to them. In my opinion, changing these attitudes isn’t hard. If a journalist, author, actor or director wishes to tell a story about disabled people – talk to disabled people first. We have all manner of voices, waiting to be heard – if you’ll listen.

*Don’t worry though, her nephew is in a wheelchair.

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Do you ever find yourself getting confused when you’re trying to cast on a large number of stitches? I inevitably lose count when I’m casting on for a cardi body or hat brim, and only realise my mistake when the ribbing ends with the wrong stitch!

This is a quick tip for making sure you cast on exactly the number of stitches you intend to. There’s not much to it: just cast on 20 sts (or your multiple of choice), add a stitch marker, and start casting on your lot of 20 again. It is so much easier to keep track of 7 lots of 20 than 140 sts, and doing a quick check is easier too when you’re working in small sections at a time.

Additional tip: if you’re working with lace or a pattern repeat, you can keep the stitch markers on your needles to keep track of each repeat. That way, if you miss a stitch or mess up the pattern, you only find out after one pattern repeat, rather than your whole row.

I prefer to use locking stitch markers like these ones I found on eBay (100 for $1.75AUD). That way, you can move them around as desired without having to make your way to that particular point in your work by slipping endless stitches. They are also handy for marking places in your knitted fabric.

These methods also work really well when you are cognitively fatigued and can’t make numbers work for you. The other day I was casting on a hat brim and found the required numbers swam around in my head. I couldn’t even count up to 20, but two lots of 10 was achievable, and hooray! I eventually had 116 stitches cast on.

I can’t take credit for either of these methods, but decided to share them with you as they help me so much. What tricks do you employ to make knitting easier?

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