Tuesday 19 July 2016


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.


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.


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


Bringing sexy back. Sing it JT.