12 February 2020

The Victorians knew what they were about

I wear Victorian style walking skirts all the time (I can't wear pants anymore, it triggers the "oh help I'm trapped" feeling, but long skirts are fine).

This, of course, means that I need petticoats to go under my skirts.

I have just completed a flannel and silk petticoat for colder weather: silk for the ruffle at the bottom, flannel for the skirt, cotton for the wider than usual waistband. As my body has evolved into a rather Rubenesque matronly shape, my short-waisted structure has more of an effect on my clothing choices: there never has been more than a few inches between the bottom of my rib cage and my waist, and as my waist has thickened it seems there's even less space now than there used to be. As a result, my skirts sit fairly high on my body and a wider waistband fits more comfortably into the curves.

I construct skirts by feel, for the most part: measure four lengths of fabric that are as long as my waist to floor (or more likely, waist to ruffle), full selvedge width, and cut two of those into triangles. Add a triangle to each of the selvedge edges of the two full rectangles, make your side seams, and voila, you have an A-line skirt.

Then, I find something to use as a waistband and measure it so it's about an inch wider than my waist. Pleat the back of the skirt (sometimes I stitch the pleats down a ways, like on a kilt, sometimes I just leave them as folds, it depends on how the fabric drapes) and fit it to the waistband, overlapping the ends and finagling them flat.

Final fitting consists of one of two methods: the fixed waist or the closure waist.

For a fixed waist, as I did on the flannel petticoat, I insert a couple of slanted darts into the back of the waistband to make it fit snugly and sit comfortably on whatever level of waist/hip it settles on and stitch them down. As my hips are not much bigger around than my waist, I can just step into the skirt and scoot it up over my anatomical padding and voila, done.

For a closure waist, I leave one pleat unsewn and stitch the waistband along the edges of the unsewn pleat, making a skirt that is an inch or two too wide to fit. Fold it over (which makes the unstitched pleat become a fold like all the rest), add a buttonhole and a button or hooks and eyes, and you're done. No placket, no gap, easy to adjust if your size should shift.

Then there's the ruffle. Ruffles serve a purpose: they help keep the fabric at the bottom of the skirt somewhat spread out, so you're not getting it tangled in your feet or having the fabric stick to your socks. I have some bolts of Japanese kimono silk which are fairly narrow (usually around 14") and I figured that would be an excellent ruffle material. I gathered it along one selvedge edge and stitched it to the right side of the bottom of the flannel skirt, then folded it over and stitched the other gathered selvedge to the wrong side, making a tube - kind of like the bubble skirts that were all the rage in the 80s. The join between the ruffle and the right side is then covered with a ribbon - this not only covers the stitching (which could just as easily have been done with a neat seam), it provides an extra level of stiffness to the bottom of the skirt, keeping it away from the ankles. The combination of a bubble ruffle and a heavy ribbon overlay seems to be just about perfect for holding the weight of my lighter skirts.

Were I a proper Victorian lady, of course I'd be wearing multiple petticoats with stiff cording or maybe even supportive wires, and caring about how far out my skirts were held so that they were shown off to best effect. I'm more of a merchant's daughter than a lady, so I'm just after practical comfort and ease (I actually *am* the granddaughter of a merchant, come to think of it). I currently wear ordinary t-shirts and sweaters over my Victorian skirts ... though I'm thinking about making some shifts and overdresses as I like having the weight of my clothing carried more by my shoulders than around my waist.

We shall see.

11 February 2020

The Apple Jack Creek Estate

We have a snowy day in the forecast, which means grey and overcast, but there’ll be sunshine again tomorrow.
As it is February (worst of the year for me, generally, mental health wise) I am just being super cautious and taking everything very easy. I have spent most of the last week buried in garden books: having spent 8 years in university, the habit of spreading out resource books and making notes by hand is deeply embedded, and I’ve been enjoying working on my “individualized gardening resources”. I have one notebook with different plants and their needs / uses / details, and another where I’m making general notes about permaculture principles, different design options, and sort of “big idea” stuff. I do a lot of throwaway note taking too - drawings of how I might lay out the yard or garden beds and “thinking out loud on paper” stuff, and I thought it would be kind of cool to have some notes that are specific to the gardens here - but I’m starting to make notes about when things bloom, when and where I’ve planted things, and why … notes that can be kept from year to year to see how things go over the longer term.
One of the permaculture books I was reading suggested that one consider the time scale of the project. I’ve decided to take a generational approach - treat my house and land like a great estate, which I am caretaker of and need to improve and pass on. I want to plant a big tree in the yard that can someday hold a swing. Shelterbelts to protect the house from wind and grow berries and veggies - even if the trees will take 20 years to get to any notable size. A potager garden to grow root vegetables and things that need care, in raised beds protected (somehow) from the quack grass. And maybe a miniature Iron Age Roundhouse in the yard, as an experiment, retreat, and play house for Small Persons. Because why not?
It’s good for me to push my brain into the future.
And, my son has the same attitude towards our land as I do - when DH and I married we were very careful to ensure that the property ownership arrangement and the will are set up so that when I die, my son inherits my share of everything, and as I own pretty much nothing except my share of the house and land, that’s what he’ll have. He intends to keep the place (he’d buy out his step siblings or DH, who would probably be just as happy to move to a smaller place were he on his own), so The Boy sees this kind of as a mini estate, too - he doesn’t mind doing work around here or even investing some of his own funds to make improvements as he feels a sense of ownership. DH finds this a bit discombobulating, as he sees it more like “the place we live at the moment” not “the place I and my descendants will live, insh’allah” but that’s okay. slightly_smiling_face
Now if only my mini great estate came with staff. :) Oh well, you can’t have everything!
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Unpopular Opinions, Service Dog Edition

Service dogs are not a first line treatment for anything, and they are contraindicated in some situations. 

Your doctor probably has no clue about whether or not you’d be a good candidate for a service dog. Your psychologist might, but it’s still kind of a niche knowledge set. Review the Aanderson service dog prescriber guidelines, particularly when considering a psychiatric service dog.

The handler’s condition needs to rise to the level of persistent disability and the dog must be actually, intentionally, and properly trained to assist with mitigating that disability: “I feel better when my dog is with me” doesn’t count (even if it’s true).

If technology can do the job just as well, then use technology instead. Asking a dog to dedicate their life to looking after us is a big ask.

Protection from discrimination on the grounds of disability is a right, but there are processes and legal protocols to follow when seeking accommodation: for public access, follow your province’s Service Dog Act (AB, BC, NS) or your Provincial Human Rights Act (everywhere else at the moment); for employer and school accommodations for workers and students, follow your province’s Human Rights Act. Contrary to popular belief, there is no blanket “I’m disabled so I can take my dog anywhere as long as I have a doctor’s letter” or equivalent in Canada.

Badly behaved dogs are not welcome anywhere, no matter what paperwork or identification they have. Also, online service dog registries are scams.

Owner training is a wonderful option but it is hard, time consuming, expensive, and potentially heartbreaking. Get guidance from a reliable source such as servicedogtraininginstitute.ca, your provincial Service Dog Team, and certified force-free trainers.

Service dogs should be trained with force-free methods. Shaping (clicker training) is ideal because it encourages active problem solving and it’s fun.

If you cannot put a dog’s needs before your own for a year and a bit, you are not in a position to owner train a puppy. Service dogs take a lot out of us before they start taking care of us.

For the entire first year, the handler meets the needs of the dog: not the reverse. Service Dogs cannot be asked to work until they have had a chance to grow up. This is hard, because our needs don’t go away just because the puppy isn’t ready to meet them, but it is absolutely essential that dogs not be rushed into work before they are ready – it’s a recipe for dog burnout.

Service Puppy Candidates can do all their early exposure work in pet-friendly environments: near a school or daycare, watching a construction site through the fence, walking on sidewalks and in parks, greeting people outside stores, visiting at businesses or offices where you know people and can pop in for five minutes of meet and greet. Service Puppies do NOT need to be following their person around everywhere nor should they be taken to places where they cannot safely make puppy level mistakes. Public access work comes LAST not FIRST.

A dog who trusts you and has solid obedience skills that have been practiced in a wide variety of situations will have no problem going into a mall for the first time as an adult. In fact, because they’ve had a chance to grow up and develop good self-control before being put into overwhelming situations, it’ll be easier for them. And you.

Service dogs are people too. They have bad days and make mistakes just like us. Deal.

2020: I'm back

I've decided to publish some of my thoughts here, again, as the transient nature of Facebook is ... well, transient. There are things I'd like to be able to easily link back to, and potentially useful things I hope will turn up in searches.

So, yeah. There'll be posts here again.

01 December 2018

Medical costs - yes, in Canada.

Just did the math.
A 30 day supply of my prescription drugs is $216.83. That's $7.23 every day. I cannot reduce them or skip doses... Discovered that recently. It's this or collapse. I need my meds like a diabetic needs insulin.
Oh and these costs are without the marijuana, which is about $8.60 a gram and I use 1.5-2 g a day. (Once I have plants here, that will hopefully go down.)
Twenty bucks a day buys the ability to sleep, reduced (but not eliminated) chest pain, and the strength to do one or two errands a week. It buys me the oomph to do what's necessary and to get through what needs doing. And no more.
That twenty bucks doesn't buy me enough functionality to work. Doesn't buy me enough strength to keep up with my housework or remember to pay the bills on time or pay for Ben's care. Doesn't pay the fuel and parking for monthly appointments with psychiatrist and psychologist, which are also necessary.
I will try again to get the Alberta Adult Health Benefit, but they turned me down last time.
It'd be one thing if this was the cost to deal with something that would, in time, get better. I am never going to be "better" and these costs are going to increase - tolerance happens, doses have to be upped, new meds added to address new troubles.
We need national pharmacare.
My husband should not have to work extra just to pay for the medication that keeps me alive. He earns "too much money" for us to qualify for government support, but that seems ... I dunno, off. I definitely think those who truly can't afford it should be first in line, but ... if we say everyone deserves health care, shouldn't chronic conditions be subsidized in some fashion? What is the point of my psychiatric care being covered if the medications that they prescribe are not included? It's like we get as far as diagnosis and critical care, but when the condition becomes chronic, people are expected to just figure it out. 
My brain doesn't work right. "Figuring it out" is hard.

29 November 2017

Living with a Psychiatric Service Dog

I have chronic complex PTSD. I was diagnosed in 2011, out of the blue. I took six months off work, rested, went to therapy, wrote, crafted, and was still staggeringly ill.

I never did go back to work.

I eventually came to get my head more or less wrapped around my diagnosis, but it's really hard: I don't have the typical PTSD triggers, but I certainly have the symptoms - I don't sleep unless sedated, I have an exaggerated startle response, I don't regulate my emotions very well (I can get extremely irritable for no reason, or overreact to simple things, or fall into the Pit of Despair, or be sort of neutral for days on end). I have developed rather noticeable memory and executive function issues: I don't make good decisions, I can't manage the finances and paperwork effectively, and holding focus on any one thing for very long isn't possible anymore, to say nothing of the way I regularly forget what I came into the room for, where I left my glasses, what I need at the grocery store, what we discussed yesterday, or last week, or last month. Yes, everyone is forgetful and distracted sometimes, but I am forgetful and distracted all the time. It's such a dramatic change from the person I used to be that if you knew me before you'd see it plain as day. The thing is, I am not so disabled that I can't pass as a regular, normal, functioning adult ... the troubles are sneaky, low level, and persistent in ways that they aren't in a healthy person.

And this makes me constantly question whether I'm sick or just not trying hard enough.

Surely, if I just put a bit more effort into it, I could concentrate and get the paperwork done.
Surely, if I just tried a little harder, I could keep up with the housework.
Surely, if I just paid a bit more attention, I would remember what people said.
Surely, if I just ate better / exercised more / followed a better routine, I could sleep at night.

Okay, I've given up on the last one. I did try weaning off my night time sedatives, and stayed awake two nights straight and was appallingly out of sorts. The anti nightmare and memory-blocked sleep are critical to my survival, and the meds are essential to my ability to function.

And I know I can't just try harder to make the reactions to some innocuous trigger stop happening: awareness makes a lot of them less powerful, but they are sneaky. I drove home from the doctor's via a different route one day, and was so out of sorts and unsettled the rest of the day ... I finally realized I'd driven past the cancer hospital, site of some seriously unpleasant events. Yeah, I don't take that route anymore. And I know that the mood stabilizer and antidepressant that I take help keep me from the need to self-injure, and put up a safety barrier at the edge of the Cliffs of Insanity so I'm less likely to fall. So yeah, I need those too.

And the meds to buy me a day of concentration (at the price of two days of recovery), and the meds that settle my unsettled nerves.
Plus monthly visits to the psychiatrist and psychologist.

Okay, even I can admit that anyone who needs that much help just to keep going is very sick.

But, it always feels like I'm just not trying hard enough. In reality, that's part of the picture of PTSD - we can't quite accept that what happened to us was a big enough deal to warrant this kind of injury ... we toughed it out, we survived, why shouldn't we just keep going the way we were?

Well. That's the long circular argument that happens in my head all the time, more or less. I know I'm sick, I know I'm disabled ... but I don't feel like I ought to be, because other people have had it worse than me, because what happened to me wasn't all that awful and I must just be a wimp for not being able to suck it up, because surely if I just tried a bit harder I could squeeze more productivity out of my scattered self.

But the truth of the matter is, I need help. I need practical help with managing the household (which I get from my family, bless them), I need lots of time by myself to meander through the kindergarten crafting stations that are my coping strategies. And I need company, at the same time. I need someone to recognize when I'm starting to get frayed around the edges and tell me it's time to go home. I need someone to ground me when my dissociative tendencies kick in. I need someone to tell me it's all okay when I wake screaming from nightmares.

That someone is Ben.

Ben is my service dog. He's five now, and has been working for me for two years. We'll be doing our certification test come the new year.

Ben came to live with us as a pet ... he wasn't meant to be a service dog. But my illness progressed and it became obvious that I was one of the people whose PTSD falls into the "chronic" category. I wasn't going to get better, and I needed to do whatever was necessary to get the most out of the life I've been given, limits and all. I considered acquiring a trained service dog, but I thought that before bringing another dog into the house, we should give Ben the opportunity to volunteer. We started boot camp in December, worked hard on his obedience and public access skills in pet-friendly places for the winter, and by spring, I knew that although I couldn't explain why, having Ben with me made things easier.

And so we began our heavy duty training: we went to West Edmonton Mall on a Saturday. And then I learned more about the standards and training of service dogs, and we worked to the BC public access test standards. And then Alberta got organized and sorted out a certification program, and now we'll be doing that.

And I know that I need Ben. He licks my hands and bunts at my arm if I am out of sorts, demands that I play Toss the Squeaky Monkey or Stuffed Sheep Battles Stuffed Bear at least once every day (which means at least once every day I laugh!), sits on my lap to provide deep pressure therapy (some alchemical magic whereby having a soothing weight on your lap makes your nervous system chill out), sleeps in the small of my back or on my legs and provides convincing proof that I'm awake (or that I'm not - when the Ben in my dreams isn't behaving normally, I often wake myself up, because it's a clue that I'm having a nightmare).

Somehow, having him with me all the time helps me hold my balance better.

Life with a service dog is different. There's a lot more planning and logistics to deal with, particularly if you travel: we are going to Ireland in December and the paperwork for flying with him out of the country is staggering. Hotels sometimes give you grief (we generally book at pet friendly places, or big chains that have 'service dogs are welcome' policies). People ask you for your ID - which our government hasn't even made available for people like me until this past fall (a printed business card with an explanation of psychiatric service dogs usually suffices). Restaurant managers and staff who aren't from around here frequently know the food service rules about 'no pets' but are often unaware of the exceptions for service animals (yet another place those business cards come in handy). People sometimes think you must be training dogs for an organization that places them with disabled people, because you don't look disabled (I have learned to smile and say "he works for me"). Small children shout "PUPPY!" when you walk by (I find this to be a bonus). You overhear conversations about "people with fake service dogs" (I have been known to say, "Some people want to take their dog with them everywhere. I have to take my dog with me everywhere."). You pre-emptively tell the hostess at the restaurant that he's a working dog. You learn to adopt an attitude of "well of course I belong here, he's invisible, we are just doing our thing" ... and have those business cards in easy reach for the inevitable questions about service dogs, and training, and PTSD. You get used to seeing most of the people who walk past you grinning at the cute dog.

You live with nose prints on the inside of the car windows, a dog bed in the passenger seat, paw prints on the console. You live with treats and wet wipes in your purse, business cards in all your pockets, and water bowls in your living room.

You try vest after vest and leash after leash to find the combination of gear that works for you both. You learn to hose off your dog's undercarriage in the shower after every summertime dip in the pond, or a winter run through the slush. You accept that there will be dog hair on everything, even your pillow.

Your family has to get used to the idea that you'll be looked at everywhere you go. It's kind of weird to have a family member who has always seemed to be okay deciding that now they need a dog with them in order to function ... but once they've seen the difference your dog makes, they'll never suggest leaving him at home again.

You have to accept that you are disabled, and that your dog mitigates that disability.
You don't have to explain the mystery of how, just accept that it is.

Ben makes my life better. I can't really tell you how or why, but he does.

Thanks for making us welcome.

11 October 2017

World Mental Health Day

It's #worldmentalhealthday.

As someone disabled by mental injury later in life, I know how important it is for people to have ready access to care. I was able to call my community mental health centre and speak with a counsellor that day. I had to do my own research to find a psychiatrist, but he answered my email enquiry and accepted a referral from my psychologist - who adjusted her fees to ensure I could continue to see her as often as I needed. 

What would I like to see change? 

- Disability benefits shouldn't be so hard to come by. I worked for 20+ years, but because my decline was gradual, CPP isn't available to me, though I've contributed all my adult life. Had I crashed hard and needed admission, they probably would have put me on disability. Because I tried hard for four years to find a way to continue working, even part time, I am considered not to have been *really disabled*. I strongly suspect that if I had say, a seizure disorder that gradually got out of control, it wouldn't be such a challenge. 

- Those of us who do everything we can to stay functional need support to do so. I would like to have access to say, a housekeeping visit once a month, or an accountant to help with the paperwork. I am fortunate to have excellent family and social support, but that's hardly true of everyone - and if my disability were more visible (say I needed physio or crutches or a wheelchair), there would be help available. My illness is just as real even though you can't see it. 

- National prescription coverage. I pay $2 *a day* for the one drug that lets me sleep... Never mind the antidepressant that keeps me alive, the mood stabilizer that counters the mixed states I regularly fall into, the anti nightmare drugs that keep me from waking up screaming, the stimulant that helps me focus, and the marijuana that helps take the edge off the jitters I feel every day. My prescription costs run in the thousands of dollars each year. 

I know I am unwell. My family knows it. My friends know it. I have a service dog who helps keep me balanced. I am disabled by complex chronic PTSD.

But because I'm a civilian who was injured by a messy life, not a first responder or a soldier, because I tried my damndest to do as much as I could, because I look okay and have no xrays or blood tests or brain scans... The programs available to people with disabilities are generally NOT available to me. 

I don't think that's right. 

I am trying my best. This is what coping looks like. Having Someone  Important say "yep you are disabled, here are the programs that could help you" would ease my journey and lighten the load on my family. 

But I'm just a civilian who had a messy life, and if I just took some more meds surely I could hold down a job. So say the powers that be. 

They should have to live a week in my head. 

They'd sign the papers just to end the experience.