Saturday, 27 August 2016

Disability erasure at it's finest. Thanks Brazilian Vogue.

[Image: a screen shot of a Vogue Brazil promotional photo of able-bodied models Cleo Pires and Paulo Vilhena cripping it up thanks to the miracle of photoshop. Who knew your paralympic dreams are simply a mouse click away?]

How do you celebrate paralympians without actually celebrating paralympians? By photoshopping Brazilian soap opera actors to look like they are missing limbs. Actual paralympians were there on set. To provide inspiration. Because that's what disabled athletes and disabled people in general do best. We provide inspiration. Not enough to actually be in the photos. Oh no. We couldn't have that. Not us icky confronting disabled people. Ew. Who'd want them in Vogue. It might make people uncomfortable. But we can make the disabled totally relateable and palatable by using able-bodied actors. It's not like paralympians could be worthy in their own right. They are only worthy when seen in reference to the able-bodied. Look, they're just like us. Brazilian Vogue has come out to say it wasn't their concept and that the actors involved were responsible. That they chose to run with the advertisement and can see nothing wrong with the concept. Well lets just all shift the blame and sweep that part under the carpet.

The caption runs that "We're All Paralympians", Except we're not. I'm disabled, I've got the progressive neurological condition, even a set of wheels to get around, and a disabled parking permit, and still, I'm not a paralympian. Neither are the Brazilian soap stars in question, or any other able-bodied folk. Or 99% of disabled folk. You know who are paralympians? The actual paralympians. The disabled athletes at the height of their professional sporting careers, they are the paralympians. And they are the ones who aren't good enough to be in an advertisement promoting the Rio Paralympics.

What hope do us mere mortal, boring, average, run of the mill disabled folk have, if even paralympians can't make the cut for an ad for an event in which they are the stars.

In an advertisement promoting the Paralympics. I'm probably going to keep mentioning that part as despite having first seen this advertisement a day or two ago I am still gobsmacked that they came up with this concept and it made it's way through all sorts of levels where someone could have spoken up with a gentle "Hey mate, you might just want to rethink this", or a more direct "You're being an ableist dick, dude" and simply vetoed the whole idea.

It's just the latest instalment in the very public farce that has also meant that there is a shortfall in funding for the Paralympics. That money set aside to enable disabled athletes from poorer nations to attend was instead used to clean the green pools at the Olympics. That venues are being dismantled and many sites where the paralympians will be housed are not accessible. But hey, you know, they're for disabled folks, so it doesn't matter quite as much.

Whilst this is a very public example of ableism, it is symptomatic of a wider community attitude not just in Brazil but around the world, that disabled bodies are unpalatable and that as a group we matter less. And most of us don't have the currency of being awesome athletes to offset our unpalatable disability. Though in truth while so many are all happy to claim the achievements of our paralympians, the same people are often the ones that bemoan our drain on public coffers for the National Disability Insurance Scheme (NDIS) or are indignant at the humble parking permit.

Time and again we see discussions of disability not involving the disabled people who live the consequences of those discussions. We are continually talked about or around. Others know better. Hell, an able-bodied actor can play disabled better than an actual disabled actor. It's all very "Don't back-chat me fella. I know boats!"

Time and again we see discussions of diversity that don't include those with disability. We are either not included, or the issue is not even raised. Even in discussions of feminism disability has often been seen as an after thought or inconvenience, or disabled women have been told how to express their views and even shut out by groups purporting to support all women.

Time and again we see token representation. Oh you have one person in a wheelchair on one panel in a fortnight long festival. Well you've met the quota. It's not like we could have two disabled people present. Or that there could be more than one type of disability represented. Oh no. We are a homogenous group obviously. We must all think and live the same way. Or as in the glaring case of the Perth Writers Festival earlier this year accessibility was such an after thought that a disabled person couldn't even get around to see events. Nothing like an inaccessible festival to tell you in no uncertain terms that you're not welcome.

Time and again we see claims of diversity (I'm looking at you Myer) that don't include disability (or various ages, body types etc). Whilst organisations such as Starting with Julius are making great strides when it comes to including disabled children in advertising, adult representation is still far from common. The same companies that are using disabled children in advertising aren't transferring that same diversity to their adult range. And diversity in general rarely includes disabled models. Or if it does that representation is so rare as to be heralded as suddenly representing a more accepting and inclusive fashion industry. The same fashion industry that still fails, with some exceptions, to even acknowledge that disabled people can and do enjoy fashion.

Media in general still falls into three camps when reporting disability. We are either inspirational , worthy of pity, or as is now more often politically expedient, "bludgers" or "leaners". The media continually reinforce a negative portrayal of disability though their language (eg they continue to fall back to the use of terms such as "wheelchair-bound" or "sufferer" despite clear guidelines on disability reporting being readily accessible). Not only do the wider community come to believe these categories, but as this piece by Carrie Wade examines, disabled people as members of that same community, end up internalising ideas of Good Disabled and Bad Disabled. Or really it is Good Enough. We get a pass at a certain level. Not enough to be worthy of a Vogue shoot mind you. Don't start thinking you're good enough for that little disabled person. Good Enough that we approve of your existence, but know that you can easily become Bad Disabled at any time if you don't toe the party line.

It is the combination of these beliefs and actions that lead to increased levels of violence against the disabled.

We are less than.

Not even worthy of being in a photo shoot when at the pinnacle of sporting prowess, in an advertisement promoting and celebrating the pinnacle disabled sporting event. (The sarcastic part of me wants to know if Kylie Jenner was a consultant on the concept.)

Is it any surprise that more and more disabled people are turning to social media to share their lives in writing and through selfies on platforms such as Instagram and Tumblr. We are continuously erased from the current social zeitgeist by active exclusion or pity/inspiration tripe reporting. While the Brazilian Vogue issue is a glaring example it is both a product and extra fodder for the exclusion and othering or disabled people. Be it the recent massacre in Japan where the victims remain nameless numbers with the thin veneer of cultural norms used as an excuse for this erasure, or the disturbingly high rate of violence against disabled people, in particular disabled women, around the world including here in Australia, all derive from the same base level of negative beliefs surrounding disability and the people who are part of that community.

"Other statistics indicate that 90% of women with intellectual disabilities have been sexually abused. 68% of women with an intellectual disability will be subjected to sexual abuse before they reach 18 (Frohmader, 2002)".  (‘Double the Odds’ – Domestic Violence and Women with DisabilitiesWritten by Sue Salthouse and Carolyn Frohmader. This paper was presented to the ‘Home Truths’ Conference, Sheraton Towers, Southgate, Melbourne 15 -17 September 2004. Copyright 2004.)

It is estimated that 1 in 5 people are disabled. Yet we continue on the fringe, an unpalatable reminder of the fallibility of the human body and life in general. Disability is seen as a horror to be avoided and those who live it are seen as living horrible worthless lives. How on earth could someone be disabled AND happy? We are seem as villains in movies, welfare bludgers by the politicians, poor things (stop patting me, people!) or inspirational heroes for getting out of bed or buying milk. And when we raise our voice to call out ableism we are whingy. The people we hold to account for poor behaviour or attitude assume the role of victim. We are told to be quiet. People have good intentions. They know better. And they are shocked and angry that we have the audacity to say we might actually be able to articulate the nuances of life as a disabled person better than them.

"Pires [an abassador for the Rio Paralympics and one of the models] defended the photos on Instagram saying, ‘As ambassador, we lend our images to give visibility [to a cause], and that’s what we are doing, my God.’" 

AKA Damn you ungrateful disabled people how dare you tell me I'm wrong!

Brazilian Vogue and the actors/models involved can side step all they like. For the rest of us we can see it for the BS it is. And we're over being quiet.

Michelle



Monday, 8 August 2016

Wheelchairs, Walking sticks, and Wall-walking.

[Image: 8 photos of a green-haired woman varying between sitting, standing, using a walking stick or a wheelchair. Photos also include her awesome merle Great Dane and constant furry companion, Freyja. The woman is smiling and happy and frocked up in each picture.]




My mobility varies.

Day-to-day.

Sometimes hour-to-hour.

Some days I can stand unaided.

I can walk around my house, furniture and wall-walking. Using my strategically placed chairs. Or Freyja makes a handy Great Dane sized stabiliser by my side.

Some days I need my walking stick. It allows me to cover short distances. To get in and out of the car. Out in the backyard or out to the mail box. I like to use my legs when I can but some days even the best Can Do attitude wont make the muscles work.

So

Some days I need my wheelchair, especially if there's distance to be covered, my legs are particularly weak, the pain is too much, my blood pressure is playing up or the exhaustion overwhelming.

Some days I'll use my wheelchair to go out, say to a cafe, AND will then use my walking stick to traverse a short distance to a non accessible loo. Often further exhausting myself in the process.

Some days I'll use my wheelchair but manage to take an unaided step in and out of the car.

Some days I'll mix it up as my body decides to be finicky or I push my piddly boundaries.

Hell, some days I can't get out of bed or crawl to the loo.

And while I'm at it, 99% of the time I'll frock up because I enjoy it. Because disabled people can enjoy can enjoy fashion. And we can dress however we like and don't have to conform to a narrow and false idea of how we should look or act.

It seems to not only confuse but anger many people when they see people standing from a wheelchair or alternating the mobility devices they use. But it's really not that hard. Not everyone in a wheelchair is paralysed or uses it 100% of the time. They are a mobility aid for a whole host of disorders.

Mobility can vary for many people. We use the best tool for the task on the day.

My wheelchair allows me to leave my house and gives me independence and freedom that I would otherwise be denied.

My walking stick allows me to make my way to my car in the driveway or pick grab the eggs from my chook house.

My legs let me do, well not a lot these days, but when they decide to get their shit together for a little while I make the most of it.

Disability is diverse.

Open your eyes and your mind.


Michelle

Today's musical accompaniment is dedicated to a now blocked individual on Instagram. If you see someone using multiple aides, or standing from their wheelchair, don't show yourself to be an uneducated, small-minded, judgemental arsehole. It's not really flattering for you and has to be an exhausting way to go through life.

Sing it Babs! 

Tuesday, 19 July 2016

Seven


The coffee machine squeals. Like Pavlov’s dog a strong desire for another cup of black liquid ripples through my body and I weigh up the hour and the likelihood I’ll be up all night. Not to mention the likely need to pee in the communal loo out the back of the shop. Always a pot luck adventure. Will it be bearable? Or more likely, will it resemble a scene out of a Tarantino film. Not to mention that accessible loos are rare as hens teeth. I can see the rising cloud of steam in my mind’s eye and caffeine sings it’s siren song. I throw caution to the wind and suck up my petulant bladder issues, embrace my doom and order another. To my right the sweet smell of citrus tart rises. All is well with the world. 

I’m the only customer seated at long line of otherwise empty, square, faux-marble tables. We’ve lived in this town for two and half years now and only really discovered this local bakery a few months ago. Drawn by a sudden inexplicable need for a classic meat pie which sent us in search of a proper country bakery. And here I am all these months later hoping that a change of scenery, a long black and a baked treat can prompt some coherent words out of my sluggish brain. My blog is seven years old today and I refuse to not at least attempt a post to commemorate its birth.

It’s been a rocky road this year and words haven’t come easily. But I’m on the upswing (I type before frantically reaching for the closest piece of wood). An upswing that is becoming more apparent as the days creep by. I’m getting better at pacing. At self care. At time. All things that were never my strong points long before illness and disability came calling. I still beat myself up about my failures and inefficiencies. I still lie awake trying to recall the important things that I know I have forgotten. I am still my worst enemy in many ways. But seven years since I first began tapping away on a keyboard, transferring the circumlocutions and tangential thoughts that raced thorough my mind into glyphs on a screen, most of which resembled those things called sentences and paragraphs, I am still here taping away. Hoping that the process of transference will somehow clarify my sense of self and work through the emotions that come along with a life of illness.

Next month is ten years since I first ended up in the Emergency Department at work. A decade working through not only the physical, but the emotional, social and psychological aspects of health are not really one I want to commemorate. But three years from that day I managed to pump out my first post. It wasn’t much just a basic, This is Dysautonomia, post. Pretty bland and not one that warms the cockles of my heart with sentimental pride. My next post was in truth my first. One that I had worked on encouraged by my counselor in the months proceeding my decision to blog. It was a great purging. Not my best writing but it was raw and honest and my heart burst all over the page desperate to remove the burden of those proceeding three years. To be able to breath again. Even for a moment. It was a sweet release. Until I shared those words on the public domain, they’d remained my secret. They remained my silence and my shame. Then I set them free. I stood naked in the middle of a crowded room and waited for the ridicule I told myself was a certainty. Instead I found a community of people who understood. The silence and shame so many felt was theirs alone, was shared. Baring my truth was empowering and addictive.

I can look back at my words and track the ups and downs of the last seven years. Life is catalogued.  All seeming more vital given how poor my memory these days. I look back and see the times I found the laughter and the times when it was all too much. I see all the stages of grief played out time and again. Acceptance raises it’s head more frequently these days than in the beginning. Though even it is beaten into submission by anger and fear, denial and much pouting with annoying regularity. It’s all there warts and all. The truth of my experience. I look back and see where I emerged from hospital under 50kgs and looking more wraith than human being. I see the sunken eyes and read my own words talking about fear for the future. Fear for the unknown that was taking over my body. Trying to balance living with uncertainty and an unbearable shadow dominating each and every day. Life became complex and I like to think I negotiated it well for the most part, but at times it’s been a complete balls up. I have failed in being the perfect patient, through self-sabotage (denial is a wonderful thing) and through the regular frailties of simply being human.

I want to say I know the secrets. That I can lay out the seven secrets to living well with illness, one spiffy item for each year of blogging. But the truth is I don’t think there is a set list. There are some big overarching ideas, but for the most part we all wing it. We aren’t a homogenous group to which you can apply a nice neat list. I listened to a podcast on Frame of Reference today and it reminded me of that individuality. We all come from different backgrounds and carry the baggage of our unique pasts. Even growing up with two siblings I know my recollections of our youth are very different. We interpreted and processed the events of our lives with an eight year gap in brain development and unique personalities and interactions with friends and family. All three of us have fiery tempers and are independent to fault, but beyond that our lives are incredibly different and the sum of our life experiences over the past 43 and 51 years respectively, have made us who we are today.

And so it is with illness. I see it even in the forums where two patients will see the same doctor, receive the same information but walk out feeling that they have had very different interactions. We walk into every encounter in the medical system with a set frame of reference that helps to determine our path from that time. We walk in carrying ideas about illness and disabiltiy, self-identity, and religion. We walk in with differing social and familial support, balanced against the social and familial responsibilities we all bare. Introvert or extrovert. In light of that it can be hard to say what the tricks are to making it through the world of chronic illness and living a full and happy life.

I do know that we can do it. I see the resilience in the friends I have made over the last seven years. I see it in my own words on this blog. I need to read them more often. To remind myself of where I’ve been and where I’m going. This life of mine hasn’t turned out as I once expected, but it is a good life none the less. I read a great piece somewhere, at some point in time, my befuddled memory wont tell me where, that life is flux. It is change. And that is what the last seven years of blogging and ten years of illness have taught me. (Well held me down and screamed in my face with relentless regularity may be more accurate.) The flux and change are natural even if they haven’t always felt that way. My life isn’t like other lives, but then again neither is anyone else’s. We all tread our own paths, even all those other 43-year-old, Australian women with green hair living with Dysautonomia. We share snippets of each others lives, but our unique parts are what determine our life experience and outlook. And equally what make us fabulous.

I can say there have been bonuses along the way. Friends I’ve made and strength I’ve found. There is a whole community of amazing people out there in the ether that I would never have been lucky enough to meet if I’d never become ill. My outlook on life that was really in it’s infancy back in 2006 has been honed and refined. Blogging has become an act of defiance. Breaking free of the lessons of my youth that said that illness was shameful and weak and that you should never speak up and share. The importance, and more than that, the power of one’s voice is one thing I have come to embrace. There are still those who don’t understand why I choose to share. There are those who mock social media. But for myself and others like me, embracing social media has become empowering. We don’t have to wait on the gatekeepers to allow us to speak. We don’t have to ask permission or sanitize our lives to be palatable to the powers that be. The power of our voices can lead to conflict as existing power structures are challenged. Not just in direct means through activism and advocacy, but by means of their growing irrelevance in an age where we side-step them entirely. We create our own communities. We share our stories and no longer wait for someone else to tell us about our experience. In the time it takes a monolithic media outlet to write an op ed on the passing fad of social media, our voices have been heard all over the world a thousand times over and we grow in strength.

Illness has been freeing. I have learnt more about myself over the last 10 years than I have in any other period of life. I care less for the opinions of others, be it what a woman over a certain age should wear, or how I should react to illness. If I listened to the words of those who talk about approaching illness in a dignified manner, I’d never have written a word. And I’d be the poorer for it. Such opinions seek to silence us least we make them uncomfortable. Because having to hear the reality of our experience is so challenging. Illness is messy. But in hiding the truth we do a disservice to all those who find themselves thrown into the new world of broken and decaying bodies. Illness is hard. I have cried myself to sleep more times than I can count. I’ve had to give myself enemas and puked and passed out in foul public toilets. But I have also had a life of joy and love. I am disabled and I’m happy. I live my life and embrace my weirdness. These are the stories that need to be shared. Not the dichotomized sanitized inspirational meme version of illness and disability, nor the pity worthy, “I’d rather be dead than live like that”, alternative. Life is a roller coaster of good, bad, and mind numbingly boring ordinary. It’s pretty damn beautiful when you look at it.

So I sit here seven years on, 43, bright emerald hair, haphazard clothing choices in my wheelchair tapping away at a keyboard in front of a fuscia wall in a small bakery in country Australia, realizing that life isn’t that bad and no matter what I’ll be okay. And so will you, dear reader. No matter what life or illness throws at you, you’ll be okay.

“Those first days and months are hard and scary and lonely. But you'll make it through. You think you wont. You'll want to throw in the towel and scream "No more!", but you'll make it out the otherside. And you'll do it again and again. I can't predict how your symptoms will pan out overtime. We are all very individual. Some will get better, some will have symptoms that wax and wane, some will have a chronic but stable process and some, like myself, will progress. Your body may still be broken, but your ability to deal with it, will get better.  You will find your stride. You will find the things and people in your life that matter and make you happy.  You'll be able to breathe,even when it's bad. It wont be easy but you'll find that your ability to cope and your acceptance will grow. Your spirit will heal and you'll find direction you never imagined. You are filled with possibilities and, if you give yourself permission, you'll find them.Being ill can give you a freedom to explore yourself in ways you never thought possible. Life with Dysautonomia or any chronic illness, is a life changed, but sometimes that change is a wonderful thing....

.... Just know, it gets better. Not in the Disneyesque sense of shooting stars and rainbow-farting unicorns. But in the real world sense  where you're battered and bruised but you're stronger than you thought and more at ease with your life. It takes time, and there will be tears and disappointment and setbacks.But one day you'll turn around and realise that somehow you made it through, and no matter what your body is or isn't doing, you're okay.”
                 
(I realised all this back in 2012, but sometimes I need to remind myself of own words)

That is what seven years of processing my life, my thoughts and emotions, though this blog have given me. So I’ll keep tapping away. Purging my brain. Quality and quantity waxing and waning, breathing in time to the pulse of my body and life. 

Thank you to all who keep reading. You are the rockstars. And your support, encouragement and friendship are what make every hard wraught letter worth it.

Michelle






We float

Take life as it comes
We float
Take life as it comes
(We Float, PJ Harvey)

 

Tuesday, 5 July 2016

Fashionable Compression Stockings 2016 Update: Options and New Tips.

[Image: I stand in my chicken run wearing a short black dress, red cardigan and fabulous hot pink tie-dye compression stockings from the Juzo Soft range. Freyja, my Great Dane, peaks through the fence longingly while she holds her Rhode Island Red chook, Jolene. It's a beautiful sunny day.]

This is not a sponsored post  just my personal research after hours spent procrastinating looking for pretty compression stockings.

My Instagram is full of fashionable compression stockings and ways I style them.

In this post I'll only be discussing compression stockings (full pantyhose and thigh high). Compression stockings, in particular waist high 30mmHg+ are the most commonly recommended lower limb compression garment recommended for Dysautonomia patients. Some patients do find below knee compression socks provide them with therapeutic compression. However, for many patients such as myself there is a need for higher length graduated compression, especially if venous return is particularly poor (I end up with a painful compressed calf and large all round verandah of fluid-filled flesh hanging over the top like a bizarre pasty leg-shaped mushroom. Bringing sexy back, yeah!) Additionally, medical grade compression socks come in a plethora of awesome patterns and colours (check out brands such as Rejuvahealth, or even just search on Amazon or Zulily for options, or a quality sportswear company such as 2XU) so fashion options are more readily available. For those of us needing thigh high or full-length pantyhose fashion can be far harder to come by.



As I've written previously I tend to wear thigh high compression as I can no longer stand stomach compression. The fashionable options available in thigh high and waist high medical grade compression have remained limited compared to compression socks and even arm sleeves and gauntlets (check out Juzo and LympheDiva). Although there have been in improvements over the years.

When I first began looking at compression stockings back in 2007/2008 I was confronted with a catalogue at my local pharmacy which gave me the options of beige/nude, white, navy blue and black. As I was to find 'Opaque' and 'Sheer' were terms thrown on the page with wild abandon and didn't match my experience with regular fashion hosiery. Equally 'fashionable' was used to represent that the band on a pair of thigh highs had some dodgy scratchy 'lace' rather than plain black. Thankfully times have changed and fashion and compression stockings can actually coexist and thrive.

Brands such as Rejuvahealth, Juzo, Jobst, Sigvaris, Mediven, Therafirm and Bauerfeind (VenoTrain) offer a range of fashion colours and in some cases patterns, both coloured and sheer. Colours and patterns vary by season and it is worth signing up to brand newsletters, or social media accounts from some of the major compression stocking distributors such as BrightLife Direct and CompressionStockings.com to make sure you don't miss out.

Brands such as Juzo offer their colours in both an opaque and sheer option. It's important to note that Juzo colours can differ between country eg German and US colours are different and it can be worth checking out the different options to find a shade that suits your fashion needs. Therafirm even offers a Preggers line with a variety of colour options specifically for pregnancy.

Two options I hadn't come across until this year are the Bauerfeind VenoTrain Stylist (German) and the Tramps Hoisery.

Bauerfeind offer a customised option in VenoTrain Stylist, though I am yet to work out how to access that from Australia (still waiting on a reply to my email). The picture below gives you an idea of the options available, and a picture of what the end product will look like. I love the idea that we can customise compressionwear beyond height or colour. Given that for many of us compression stockings are an everyday item and will be for the foreseeable future, the idea of being able to personalise is very appealing. I'll keep you posted.


There are other brands offering fashionable compression eg Tramps (picture below) offer a 25-30mmHg waist high in Bryanna Cheetah Jacquard with thong toe in Grey and Natural (which are a similar pattern to ones offered by Rejuvahealth a few years back), but you do have to search. 


Mediven also offer a Swarovski embellished version of their stockings in the Mediven Designs range, though they can be hard to source (the UK arm of the company offer 3 designs whilst the French arm offers 6) and I suggest contacting the company directly to see if they are sold in your particular country. Crystal embellished compression stockings have come up over the years but sourcing them has always been problematic, plus they are fairly pricey. But for a special event they'd be fantastic.

 (So cute, source)
 (UK designs)


That pesky thing called 'cost'.

Quality compressionwear is a significant financial investment. The more unique the item the more the cost. Items manufactured to specific individual measurements can be incredibly expensive. The financial burden of compressionwear continues to be a major factor for patients as not all insurance companies or government suppliers will pay for compression wear, or will only provide the most basic of styles. But there are a number of ways to cut costs.

Sign up and First purchase discounts: A number of sites will offer buyers a discount on their first purchase. These discounts can range from 15-20% which can be a considerable benefit on a tight budget.

Coupons: There are a wide range of coupon sites offering discounts for various compressionwear websites and specific brands. Simply Google coupons and the brand or company you prefer and see what comes up. Most coupons are time limited so if you find a good one get on it pronto!

Sales: Most websites will have a sale section These can provide you with considerable savings (50-70% in some cases). For example at the time of writing, Rejuvahealth have some lower strength, 15-20mmHg, patterned pantyhose down to $30US score! Get on that people. End of season colours often come up in the sales a month or two after the change over. You sometimes have to put in the hard yards and search but if you have a colour or style you like for the last season pop it in Google and see who has any left. It can be pot luck as to sizes, styles and lengths available but I've scored some bargains over the years. If you're after a pair of stockings to wear under jeans or long skirts the world's your oyster with well known sites like Zulily having reputable brands at bargain basement prices.

Shop around for postage: Postage is the nemesis of anyone living in the Southern Hemisphere. Current rates can be highly prohibitive even if the stockings themselves are a bargain. Sometimes it is worth contacting a company to see if they will take pity on us poor folk down under and be willing to wave their postage or at the least provide a discount.

Shop local: Related to the postage issue is the currency exchange rate. Our piddly little AU$ is doing it tough when ordering from OS. However, sometimes local distributors can provide a cheaper option. For example here in Australia The Appliance and Limb Centre can source Juzo Softs from both Germany and the US at a much cheaper rate than using OS suppliers at present. Always keep an eye on exchange rates. Given the uncertainty of world events such as the recent Brexit, exchange rates can change rapidly. 

You get what you pay for: There are many companies selling compression stockings for next to nothing. I saw some fabulous Beetlejuice-style black and white ones out of China for $10US be still my heart! But alas, when I contacted the company it became clear that we differed on the definition of 'compression'. With cheaper versions it is often hard to find out the exact compression rate and if the compression is graduated. Many companies wont respond or respond with automated emails with little to no detail.

Whilst compression stockings can be fashionable they are first and foremost a medical device and like any medical device you shouldn't scrimp on quality. If the compression is poorly designed it may not perform properly and can lead to problems in how fluids are returned. Remember we are buying these stockings to help with a medical problem. It is better to save up and buy one good quality pair of stockings from a reputable brand, than to have five cheap, but dodgy, pairs.

Sizing.

Brightlife Direct now have a size/brand calculator the Brightlife Direct Size Calculator which I tried out the other day. It's a great option if you are just starting out looking at compression stockings and are feeling overwhelmed at what to buy. You simply put in your measurements and style you're after and it pumps out a list of brands that may suit. To give you an idea of how it works I popped in my measurements and usual length and compression. As you can see below it suggested a number of products that may work for me. I would always recommend double checking a brands individual sizing to be sure, simply because it can be such an expensive outlay, but this is a great starting point.




For more on compression wear 
check out:


Compressions Stockings from Beige to Brilliant Guide. My basic guide to selecting and buying compressionwear. I wrote this way back in 2012 and it's still one of my most popular posts.


Below are a few reviews for different brands I have purchased over the years and a bit of a tongue in cheek post about how I style my compression stockings.

Rejuvahealth Review.

Allegro, Microfibre 20-30mmHg Black Thigh High Compression Stocking Review

LympheDiva Gauntlet Review.


Fashion blogging is not for the faint of heart

Michelle

Bringing sexy back. Sing it JT.

Thursday, 23 June 2016

Windows


[Image: A woman, me, sits before a mirror with her merle Great Dane, and constant companion, Freyja. She's wearing grey and blue pjs and the picture is muted and dark. Her pale and tired reflection looks back, The mirror, like most of the house has Great Dane slobber all over.]


I can hear the television from the other room. The rhythm of the speech declares it sport in some form, though the content of the comments is lost in a melange of muffled sound. The world continues on oblivious to my presence on this side of the white MDF door. That this cheap and poorly fitted paper thin block could cut me off, rubs. Not that I can remedy the situation.

I lie supine, bound with invisible straps. Words fail as mind and mouth refuse to communicate. What simple ideas and words coalesce in my brain, unable to reach their destination. I am reduced to the most basic of function.

I don’t know where I am now. I try and pull myself together but the exhaustion foils my attempts. There are points where the unrelenting nature of illness catches up. Knocks you down and cages.

I’m coming out the otherside but the pull of the cage is strong. I worry that I’ll lose my footing and slip back. My windows of semi-functioning are small. Some days so small that simply trying to work out how to access the series I want to watch while lying on the couch is beyond me. Some days I get there. The programs indexed but I can’t recall what it was I wanted to watch. I end up overwhelmed by choice, too much data for my mind to process. So I close it down and watch the midday trash TV on whatever channel happens to be on.

The last three months are vague. Someone snuck into my brain and ran their thumb pad over the ink before it dried. A large smeared mess left in its place. I can’t recall what I’ve forgotten but I know I’ve forgotten things. Important things and small things. That knowledge I have, but the specifics. What was it I was supposed to do? Who was I supposed to call or email? Did I make promises to do things. Most certainly. I do that all the time. But what was it I promised to do? And for who? My brain is a mess. My cognition slowed and frequently disorganised. Trying to carry through a thought to completion beyond me more days than not. I feel like I should apologize, but to who? About what? I’m not sure but the feeling is there, pressing hard as I lie in bed at night. Reminding me that I’m messing up. But how do you remedy a situation that you no longer recall?

I have ideas. But they are gone as soon as they start to become clear. I can see them for a split second. And then…nothing. Just a vague impression that lets me know I did indeed have a thought, a plan, a something. Just enough to tantalize and frustrate. I was sharp once. I know that. But my confidence has taken a battering of late. The chunks of time, of events, of conversations that are missing add to my anxiety. I am an unsure about things that would never bother me before. Simple things and big. Am I saying the right thing? Doing the right thing? I feel stalled by a brain that has gone on strike.

So I have avoided my lap top. My emails continue to pile. I still find it hard to read and hard to respond. I’ve lost track between one paragraph and the next. But a paragraph is better than it was. It’s getting better but it’s excruciatingly slow. Nails on a chalkboard seemingly drawn out for an eternity.

It’s getting better.
It’s getting better.
It’s getting better.
If I say it enough it’ll become truth.

I’m trying to be kind to myself. I’m trying to embrace the tiny windows. To live larger by living smaller. Simple, short and sharp. Focus on the joy part and embrace every second of it.

I sit with my chickens and play with my dog. I get dressed and I take silly photos. I’ve started back on Facebook, but I’m limiting my time. I bug my husband to go to the local lake and roll around through the park lands. I have the odd coffee out and just try and breathe.

I’ve started back with small exercises. I made pizza and sweet scrolls. I potted a plant. I rolled to the cow paddocks on an icy day and watched the pelicans and water foul swim on the dam. I stood at a council meeting and spoke my mind. A small glimpse of the old me. Exhausting and exhilarating. I wrote this blog post over weeks. A snippet here and a snippet there. But I wrote it.

Life is smaller, but the parts are more healing. I am resigned to patience. I will wait. My brain will come back. I will step back into my life.

I’m on extended sick leave.

For now. But not forever.

Michelle

[Image: A woman sits cuddling a large orange chicken on a cold and dull Winter's day. She's pretending to give the chicken a kiss. The chicken, Sharona, is plotting the woman's death.]

*Thanks to Stefani, from Kind of broken: Lifestyles of the Young, Sick and Fabulous, whose own efforts prompted me to try and get this post into something resembling coherence. We're both going to get there. Of that I am sure.



Not sure why this didn't come up on the post. But hey. Matters little in the big scheme of things. But I've been listening to a lot of The Jezebels in my down time. I love this song, but there's something about the film clip in particular that I really love and feels invigorating.

Wednesday, 4 May 2016

MIA


[Image: a woman kneels on brown carpet, forehead touching the ground in the yoga pose known as Child's Pose or Balasana which helps her gastric pain. Light shines from the window behind her, reaching a chair covered in a bright red throw rug.]



Eight minutes and six seconds. That's when my exhausted body said hell no. I lay on my yoga mat listening to Adriene, from Yoga with Adriene instructing me to massage my feet. A panting blob lying on green rubber matting not even capable of a proper savasana. Autumn sun was a lovely idea. The birds were chirping, the chooks scratching away in their yard. Even the workmen that have been at my neighbours for weeks were silent. Freyja came over and nuzzled my pasty face before deciding to take a poo less than a metre from my head.

And in that moment, the last couple of months were summed up neatly. Short lived joy followed by a large foetid mustard-coloured dog nard from which your slow and exhausted body struggles to escape.

I'm not quite sure what happened. The usual illness malarky was muddling along, when suddenly it all went pear-shaped eventually ending in a long overdue ED visit and a protracted recovery phase that still feels in its infancy.

I've tried repeatedly to take a deep breath and step out into the world only to be hit hard with payback. I've dressed up and gone to a cafe only to be forced to watch Mr Grumpy eat while I swallowed down vomit and ate antiemetics. Sit out with my chooks and recovery sleep is measured in hours. Yesterday I went out for 20 minutes, saw some cows in the paddocks next to our housing estate and today I woke up struggling to breathe or lift my head from the pillow.

Dip my toe in the world. Tell myself I can push through. And my saggy, stretch-marked, arse is where I keep on landing. Payback comes in metric fuck tonnes these days. And it can no longer be ignored. My droll husband tells me at least I look sick now, but even he finding little in that line amusing.

I have a collection of vintage cutlery. In amongst it all I have several tiny silver, salt and mustard spoons. Smaller than my little finger. My spoons have been in short supply of late and those I do have are reminiscent of those tiny salt and mustard spoons. So I've hermited. Built myself a pillow fort and tried to simply ride it out. When existing is hard the rest of the world has to be put aside to focus on trying to heal. And of late it's been pretty bloody hard.

I've tried to put pen to paper or fingers to keyboard and realised there was nothing. My brain too flummoxed to conjure up a coherent thought let alone hold that thought, coordinate fingers and get it onto a screen or piece of A4. Reading has equally been beyond me. And I have been bereft. Two of my greatest pleasures gone and my world far more claustrophobic.

I have known that I have cognitive issues for some time, more than just regular old brainfog. I had a brainSPECT scan last year that confirmed moderate impairment in the blood flow to my left temporal lobe, and mild to my right. I haven't fully processed what it all means, but it's effects are clear at present. My reserves are piss poor and now documented in a series of rainbow coloured scans. Add in worsening health and it would seem those reserves have been wiped out.

To respond to emails or messages is difficult in the extreme. Primarily because even reading them is exhausting. It's a weird place to be. That which was once my strength is muted. I have to believe it'll come back when this patch has passed. Losing my words isn't an option I want to contemplate.

This is the most I have written in over two months. It's been a struggle. But it's better than the usual staring at the screen, perplexed and frustrated, impotent hands poised over the keyboard, that has marked the last couple of months. So I'm taking it as a cautious sign.

The pain in my arms and wrists and the exhaustion that have come from these few words are worth it just to see them sitting there before me. They aren't perfect. But they exist. A small piece of me out there in the world again.

Michelle

I wanted to say thank you to everyone who has sent emails and messages of support and concern. I haven't been able to respond and sometimes even read bar the first line or two, but those messages are much appreciated. I'm not really on social media at the moment except for a bit of Instagram where deep cogitations are not really required. I'm not sure when I'll get back on properly. I need to be ruthless in my energy usage to try and get on top of this again.

"Come on my friend
Drink to good times
Golden wishes
To your health and mine."
(PJ Harvey, You Come Through. 2004)

Tuesday, 16 February 2016

Chronic crafting: Walking stick holder.

[Image: A black wheelchair sits on green grass. It has a red patterned seat cushion and a bright red walking stick holder on the side.]

I spend a lot of time swearing at my walking stick. When I blame it for my lack of coordination and it's tendency to throw itself on the floor should I dare to lean it against a wall or desk. But most frequently my potty mouth is reserved for when I am in my wheelchair, think I have it hooked on the foot rest, only to have it dive sideways, under the foot rest, or it's classic drop and get stuck in a tram track. The slightest bump or if I try to think and breathe, and it's gone.

Times I may have sworn at my walking stick include, but aren't limited to:

At a medical appointment where first meeting a doctor.
In the poorly insulated disabled loo where I'd just managed to make my unsteady way to the loo only to hear a loud THWACK as it hits the sticky tiles.
In the local clothes store when it became hooked on a long sleeved top and was wrenched from my side before my muscles can work out how to react.
In front of my inlaws and, small children.

Such swearing is apparently unseemly, and I fear I may be adding to the angry-disabled-with-a-huge-chip-on-her-shoulder-shouldn't-she-be-all-smiley-and-inspirational, narrative.

So in an endeavour to not let the disabled side down with my surly sweary attitude and because I am completely over it falling off my wheelchair I got my craft on to find a solution. Though in my own defence swearing a lot is apparently a sign of intelligence and trustworthiness, so here's my:

Michelle's Easy Stop My F**kin' Walking Stick Falling Off My Damn Wheelchair Tutorial 

You'll need:
  • 1 PVC pipe straight join
  • 1 PVC pipe cap
  • 2 metal hose clamps
  • Paint whatever you have lying around. I used Haymes Low Sheen Exterior in Carnation. But if you don't have any, a can of spray paint would make life easier. Just make sure it's a hardy exterior paint if you want it to last.
  • Paintbrush
  • Flat head screw driver


Step 1.

Head to your local Bunnings or other hardware store. Get lost in the million isles. Become overwhelmed with project ideas. Make a detour to the plant nursery and buy some more coriander that will proceed to go to seed and never grow properly despite your pleas and tears. Finally head to the right isle after Mr Grumpy starts to develop his FFS face.

Step 2. 

Have your walking stick with you so that you can make sure you are getting the right size parts. Look up at the amazing array of plumbing accessories. Start to feel slightly nauseous and grey because you forgot that looking up is not your friend, and hand it over to Mr Grumpy to grab pieces. Make way out of Bunnings with necessary craft items, doomed coriander, an impulse buy of five pots of instant garden colour and, yet another bucket.

Step 3. 

If you can, buy a can of exterior spray paint. This would make life so much easier. If like me you think, "Hmm I have some left over paint. That'll do." still get the spray paint. Otherwise you will end up swearing at the paint that wont go as smooth as you imagined as you went with the cheapo brush as it was "only a small project". Apply a few layers over the PVC pipe end and PVC pipe straight join leaving time to dry in between each layer. Don't get impatient and cock it up with finger prints or drop the piece that's all dry except for that one edge which just happens to be the edge that you knock against your good dress. Additional tip: Don't be lulled into a false sense of security because it's just a small quick job so you can't be bothered with the effort of changing into old clothes. Change. You/I will always drop something.


Step 4:
Attach each piece to the side of the foot rest on your preferred side. The PVC pipe end piece goes lowest to stop your walking stick falling through. The metal hose clamps come completely apart so you can wrap them around the pipe piece and wheelchair tubing easily. A second pair of hands or much swearing will help to hold the piece in place as you tighten the hose clamps to secure the PVC pipe parts in place.


A tail may extend from the rings. This is sure to catch on everything so remove if possible. My arms of patheticness are not up to the task so I am waiting on Mr Grumpy to fix.


Leave both hose rings a little loose. Place your walking stick in the holes to help line up both parts and to find an angle that works best for you. When you're happy with the angle and line, tighten up the hose rings to stop movement.


And there you have it. No more innocent ears being sullied by my swearing. At least not for this reason. Oh and obligatory Freyja photo as she's awesome, puts up with my swearing and loves the camera.

Michelle

Walk/Roll this way depending on the day.

Wednesday, 10 February 2016

Compression Stocking Review: Sigvaris 712N Allure 20-30 mmHg Patterned Thigh High Compression Stockings with Lace Silicone Border in Black.

[Image: a woman from the waist down wearing a floral skirt, compression stockings and black boots, in front of her messy bedroom with clothes and shoes strewn on the floor.]

I should add this is not a sponsored post (mind you I wouldn't knock one of those back. It would be nice to be able to pay for my own coffee just once). Nor is it an exhaustive list of brands and options. Instead, it is based on my personal experience, and for those considering compression stockings either for the first time, or those tired of the regular range of stockings and looking for a bit of spice in their compression wear. Your treating doctor should be able to advise you as to whether compression stockings may be helpful for the management of your form of Dysautonomia and the strength and type of stockings you may require.


Regular readers will know of my passion for finding fashionable compressions stockings. Frankly if I have to be sick I'll be damned if I can't be fashionable. I spend way too much time online looking at compression stockings. I search for anything that is remotely patterned or coloured outside of the traditional white, beige, black or navy blue. In the mid to high range compression (20mmHg +), it can be hard to find many options. Add in that cost of more fashionable versions can be prohibitive to many, and it can be hard to find practical and fashionable options.

I love my Juzo Soft compression stockings and have been wearing them for a number of years now. I have a range of colours and a fabulous tie-dyed pair which I wear on a daily basis (I may need a Juzo Soft intervention). But while they are one of the few brands to offer a broader colour range and tie-dye options, and sheer options, they do not offer any sheer pattern options. I have tried (see review here) and quite like the options offered by Rejuvahealth's fashion range but found that my legs were too long for the brand. After some searching I discovered that Swiss company Sigvaris, offer a small range of sheer patterned stockings. last year, with a function coming up and running out of time I decided to bite the bullet and try the

Sigvaris 712N Allure Sheer Patterned Compression Stockings
.

(Source: Sigvaris Allure Sheer Patterned in Graphite)

They come in two colour options: Black and Graphite.
Two Strengths: 15-20 mmHg and 20-30 mmHg
Two Heights: Thigh High and Full Pantyhose.

I chose the 20-30mmHg Closed Toe Sheer Patterned Thigh High Compression Stockings with Lace Silicone Border in Black.

They sit around the $92US mark at most online retail outlets (eg Brightlife Direct and Compressionstockings.com).


(The reinforced heel is darker but does not extend to a point where it becomes unsightly. As you can see in my ruby bow shoes above they aren't visible.)

I have now worn these stockings on a number of occasions and they have become my default pair for going out of an evening. As such they are well and truly road tested. I used to love my fishnets back before I developed Dysautonomia and these are a nice medical grade compromise.

(Obligatory Freyja shot)

They are a delicate pair of stockings. Even more so than the Rejuvahealth versions I reviewed last year. I was conscious of every rough patch of skin on my hands and spiky edge of fingernail when putting them on. Having said that I am yet to snag them yet (stumbles around touching wood).

(The band is pretty and there is a relatively smooth transition to the stocking itself.)

Each brand differs slightly in the band at the top of a thigh high stocking. The Sigvaris Allure had a reasonably smooth transition and is lighter than the Juzo Soft and Allegro products I've tried. It helps to keep the overall delicate feel of the stocking itself.

(A comparison of the silicone border of the Sigvaris (left) which is fine lines and Rejuvahealth (Right) which are dots similar to the Juzo Soft. You can also see the length difference in the pairs. Sigvaris are great length for long legs.)

(The toe is darker but transitions well. My feet are small for my height so they didn't stretch out the foot a lot so it was noticeably darker in the lower portion of the foot. 
It's a problem I've found with every brand I've tried.)

(Obligatory Freyja shot:
Dress is from Lazybones,
Shoes are Rivers,
Necklace and bracelet I've had for years.)

The Verdict:

I like them and continue to wear them though they do have some issues:

They have not maintained their original compression and are reasonably easy to get on now. They still provide more compression than say a 15-20mmHg pair but are noticeably laxer. Given their price point and that I have only worn them on special occasions, probably 8-10times at the most and only a few hours each time, I would have expected that they would have maintained their compression level.

The silicon top feels more precarious than initially, although they are yet to fall down. I haven't had a skin reaction to the silicone lines so far (stumbles around touching wood once more). I mention this as off and on I have had a reaction to the Juzo Soft silicone dots. 

After going over both stockings with a fine tooth comb I only found two tiny pulls. As such their delicate feel belies their durability. I live with a very touchy feely Great Dane and am unsteady and bump into things and fall on a regular basis when I'm not using my wheelchair, so they have been through a few trials.

The black dots are starting to fray a little but not worryingly so.

They have been washed multiple times in a lingerie bag on a cold setting in my washing machine using a sensitive washing powder.

They are a decent length if you have long legs. They are of a length comparable with Juzo Softs, and much longer than both Rejuvahealth and Allegro brands,

As you can see from the chart below they do have a short and long option.


Overall, I would buy them again, but only for use as a special occasion compression stocking.

Jobst do a similar version, the Jobst UltraSheer Pattern 20-30mmHg Thigh High Compression Stockings with Silicone Dot Boarder which comes in two colour options Black and Espresso. They fall in roughly the same price bracket as the Sigvaris. I haven't tried these so can't comment on how well they work or stand up over time.

(Source: Jobst UltraSheer Pattern in black.)


Michelle

For more on compression wear you can check out:

Compressions Stockings from Beige to Brilliant Guide.

Rejuvahealth Review.

Allegro, Microfibre 20-30mmHg Black Thigh High Compression Stocking Review

LympheDiva Gauntlet Review.


Fashion blogging is not for the faint of heart


These reviews are always exhausting with the putting on and off of compression stockings and the up and down, getting dressed fighting off clingy Great Danes and warm Summer weather. But it's done! Now to collapse on the couch.

I've been listening to Sarah Blasko all day and I always have a wry laugh when I hear the lyrics "we wont run" as I haven't run in a looooong time.

We won't run, we can fight

All that keeps us up at night

There is far to go now
Let's not waste a minute more



Wednesday, 3 February 2016

Come Away With Me: Beach musings.


[Image: A woman walks barefoot along the beach with her walking stick. Her head is down and she is wearing a large blue hat, pink floral dress and green cardigan.]

The parade of children on new bikes begins. Pink is a favourite. Closely followed by silver. A line of training wheels clack
ing along the slightly melted bitumen. The more experienced zoom past their brothers and sisters to do an effortless 180 where Beachcomber meets Meridian. Zooming back again to see if their younger kin had worked out the wobbling combination of trepidation and exhilaration. The populace, both holiday fly-ins and locals, walk by trailing towels and dogs. Brown and black, big and small, hairy and sleek. The more exuberant leading their walk-enablers. The rest walking contentedly next to their owners. I look for the rotund charcoal staffy we met on Christmas day. His body wriggling with excitement as he tried to squeeze under the gate to meet our very confused Great Dane. His gyrations made the Christmas bell on his collar jingle and gold tinsel glitter in the sun. And brought a smile to our faces. Boxing day has arrived and so has the procession past the window.

I watch them file past slowly, backed by azure skies and the green-grey tea tree and bottle brush. Their languid pace courtesy of the magic that is holiday time and the weight of Christmas overindulgence. My feet hang over the arm of the soft blue recliner. To tired to bother with the mechanism to raise the footrest. The blinds clatter in the breeze but I hardly notice. Closed eyes and muscles turned to putty over proceeding days my main focus. The sea breeze blows through the open door and flows through the house carrying salty notes and the sound of the waves.

We’re back at the beach. A friend has loaned us his house again. We were here for Christmas last year. For much needed respite and healing after a really rough year. And now we're back for a booster shot. The beach less than a 100m from the front gate means even a quick trip to watch the waves or drink a glass of wine as the full moon rises and the sun sets, is easy. We've transitioned smoothly from suburbia to beach life as if this has always been our norm.

Vera has traversed the path from beach house to dunes numerous times. Both packhorse and mode of transport. The crunch as she rolls testament to her time on the foreshore. She and I have bounced down steps and up to sink in deep soft sand. Husband and offspring content to drag and push at need. Or when it was all to hard I was carried or supported with a now oxidised and unfoldable Francesca. She too carries a new tone in her black tubing as we walk slowly down the driveway. A rush of sand and the tinkle of small bits of shell and larger granules with every movement. Lift, crunch and rustle. The sands of time falling in step with my dragging feet. Slowed and liquid the time of the sand and sea. Wild salt on southern winds preserving time for later need.

There's an ease in my heart that I haven't felt in a long while. Something about the salty sea air draws the ache from my soul. Pulls it like salt does the bitter water from cut eggplant. Draws the pain and fear, the exhaustion and melancholy. The, enough. Pulls it slow and sure as I am hypnotised into quiescence. The call of the gull overhead, or twitter of the blue headed wrens flitting on the grass just outside the window, whisper soothing words. The wind carries the bitterness from my skin. And I am refreshed once more.

Beach time is thinking time. It's easy to process the world while I'm there. Clarity is mine in a way it hasn't been for a lot of the proceeding year.

And now we are home.

Three articles have appeared in my timeline since I returned. And each seem to have arrived at the right time. They talk of ease, a move from well to powerful and authenticity. 

Ease is something I rediscovered on the sands. It’s something that I have on and off though I've never really named it before. Yet name aside I have been striving for it everyday. My body continues to be obstreperous. I sit here today sporting a hand brace after a fall. Everything I eat hurts and makes me want to vomit. The bone pain in my legs is back. And my bowels have closed for business. The list continues. And yet I'm at ease. Mentally, emotionally, and spiritually I am at ease. For the first time in a long time.

“…when I repeat the phrase, ‘may I live with ease’ during meditation, to me it also has another meaning – may I be at ease with my life, regardless of the circumstances. May I be at ease with the inevitable ups and downs of my existence, instead of constantly struggling against ‘what is’. This is not passive, or resigned – in fact, being at ease with our lives involves a very active engagement with reality, as opposed to clinging onto some idealised fantasy of how life should be…” (Anja Tanhane, Holiday Favourites - Living with Ease)

This is how I've been trying to live. My trek to the beach involved being wheeled from the house, down the road to the top of the dunes. My legs too weak to make the distance and my body unable to tolerate the expenditure of energy or time upright. I was unceremoniously carried up and down dunes and over soft sand. The only person on the beach with walking stick and wheelchair. Held in waves by my husband so I could feel the pull of the water and taste the spray on my lips. I could do nothing alone. Independence long gone. Such forays were curtailed by my recalcitrant body. I was nauseous and exhausted. In pain and unsteady. But the ease persisted. The weight of the last few months on it’s way out to the cold reaches of Bass Straight. Drawn as my body tumbled in the waves and taken by the undertow, to menace me no more.

O'Dwyer talks about ageing powerfully rather than well or gracefully. Her points regard choice and control, and much can be transferred to a life with chronic illness. 

"....there are no guarantees in life. Ageing is a crapshoot...But you can load the dice in your favour." (Dr Siobhan O'Dwyer, How to age powerfully - and what that means?)

[Image: A woman in red and white bathers and a large blue hat lies on a blue and white floral throw on a beach. Her trusty wheelchair sits behind her a clear blue sky overhead.]

I may be ill. But I can control many aspects of my life through the choices I make. We can have health and life in the context of illness. I can choose to be powerful by looking at all aspects of my life. I have gone back to Pilates. I can do very minimal exercises and only when lying down. My muscles refuse to coordinate and I have trouble initiating movements. Much of my energy expenditure is in trying to rope them in to complete a movement. But I'm there and I'm
doing it all the same. I'm trying to be better with my diet. Following the guidelines from my dietician to manage my defunct digestive system. I am making sure I do the little things that bring me joy, like chatting to my chickens or preparing my succulent pups for planting. I am back to scheduling mindfulness and simple yoga. There is a powerfulness in that. I will never have health as most know it, but I can maximise what I do have. 

I found my power again at the beach. I managed the basics of my yoga routine on a towel in the front room of the house. I watched the families walking buy and the yukkas rattling in the wind while I melted down into my savasana. My gaze soft and my breaths long and deep. The clean smell of salt on the wind through the flyscreens. Swirling overhead dispensing calm and clarity. I sat on the front porch and completed my mindfulness exercises. And I allowed myself to breath in my surrounds, while sipping on a forbidden wine or two, free of self-recriminations.

“…Knowing what those fears are, being vulnerable and facing them head on with your authenticity, will enable you to stand up and go in the direction that you desire…” (Helen Edwards, Why Authenticity is Vital to Your Happiness)

Being authentic doesn't please everyone and it shouldn't. I know some see me as a little eccentric. But there is something freeing in simply being yourself. There were stares at the beach. Our daily familial procession of wheelchairs and lifting, and unenthused Great Dane. As I walked on the soft sand at the waters edge cane at hand I received the double takes and whispers. Good or bad I don’t know. I was too busy having fun. When I wore bright red bathers with my pasty white body I didn't care. When I received a comment on Instagram “You look so stunning with a cane” I did a double take. What does that mean? That I shouldn't? That it's a surprise that someone may look okay and be disabled. That I don’t look disabled and ill? That in being myself I don’t fit in the established ‘look of disability/illness’ criteria? It was strange to think that my authentic self was somehow a surprise. Being ill has stripped away a lot of the shoulds. I don’t have time for that malarky. I do have time for me. And in making that time I have more to give. I’ll wear a mini in my wheelchair, I’ll sport blue hair and wear red high heels. I’ll watch scifi and horror movies and run far from rom coms. I’ll belt out Nina Simone's I want a little Sugar in my Bowl, and sing Prodigy’s Firestarter at the top of my lungs. I’ll put a disco ball in my bright red chook house and have a FUBAR sign on my desk. I’ll be “one of those lefty feminists” as I was called last year. I’ll simply be me.

[Image: A wheelchair with an eldest son's legs sits on the beach at sunset. The sand is golden and a blue and white floral throw sits in front of the chair.]

I’ll embrace me and my ease. I’ll be powerful and authentic. I’ll sit on an empty beach at sunset and watch the light fade and the moon rise with a glass of cheap sav blanc in a squat glass tumbler from a Belgian airline. I’ll collect more shells and pale drift wood. I’ll watch the sand swirl in the bottom of the glass and breathe it all in. I’ll breathe in me for the first time in a long time. And I’ll feel the lightness of being that comes from time away and the magic of sand, sea and wind.

Michelle

Not exactly a beach song, but Norah's languid style feels perfect. My family call her Boring Jones and always paid me out for listening to her. When the boys were little I if they saw me running a bath and putting my candles up, clear indicator I was about to shut the door and relax for an hour, I'd get the chorus of "Are you going to listen to Boring Jones, Mum?" followed by great guffaws of laughter because they thought they were so so funny.