Break

[Image: a photo of a white dinner plate with a pile of orange pumpkin penne pasta bake and piece of sourdough. The top of a silver fork can also be seen. A poorly handwritten url is written at the bottom of the photo. It reads "www.livingwithbob.com"]



Christmas is past and New Year's on it's way. The cacophony of constant advertisements on every medium scream CELEBRATE BUY CONSUME. I've done all three. But in a subdued, more balanced manner, mostly involving food. Two Christmas celebrations down and a last belated one to go. All the trimmings here. In the heat of an Australian Christmas there is still turkey, ham, and duck. Brussel sprouts and duck fat potatoes. Trifle and Christmas pudding with lashings of brandy custard. The little I can eat is of equally little concern. It's about giving to my family, to those I love. I cannot do much of what I want to express that love these days, thanks to my body and lives spent in different cities, but in this once a year monumental period of indulgence and hard work I can provide a tangible demonstration of what they mean to me.

A new lap top, my last had been living more in the realm of blank screens, it's only roll that of recipient to my frustrated expletives, has meant an enforced absence from emails and messages. I have no inclination to check anything. I have no need to feel the pressure, mostly self-imposed, to be on tap to all and sundry. My ability to say no, even if it's just to a computer program rather than human requests, is improving. It's only taken 44 years.

The world is there on my phone if I want it, but in truth any scrolling is more the product of habit than want. It has been used to document our daily lives and Christmas festivities, or to run Netflix or Plex, but mostly it has sat on my bedside table, on top of the ever increasing pile of detritis that chronic illness and chronic pain invariably creates. Silver foil and plastic in various shapes and sizes. Coloured cardboard boxes with pharmacy labels are stacked and toppled over. Saved from the inevitable plunge to the carpet below by a drinking glass, or three, and a half-empty tube of Mor's Mashmellow hand cream.

My desire to plug in is minimal. A small part of my brain twitches with FOMO but it is quickly silenced. I'm tried. From the past year and a three day post-Christmas migraine that makes it even harder to plug in. Even now the low rumble persists in the left side of my head. My left eye ball still recoils from light and feels both swollen and the lingering burn from the invisible red hot poker that has been using my left orbit as an Air B&B for the past few days. But it's dwindling. Slowly. But I'll take it as progress.

As I type I'm cooking pumpkin in the oven to make a pasta bake for dinner. The effort with the knife stresses the already burdened tendons and muscles in hand and wrist. But the need to create, to prepare, to eat something other than left over Christmas ham sandwiches propels me stubbornly forward.

There is a quiet bliss that slowly reveals itself when I cook. I rarely use a recipe, although my large collection of recipe books would suggest otherwise. Mostly I cook by touch and smell and sound. If it looks right then it is right, a timer only a prompt for a sluggish and forgetful brain not a slavish deliniator of cooked and uncooked My measurements are those of pinches and dribbles. Even if a measuring cup ends up in my hand there's always a smidgen more or a smidgen less. My refusal to be constrained to set millilitres or grams part obstinance and part an instinctive knowing that a bit more or a bit less is needed.

If you asked me to write you a recipe I'd be stumped and stressed.  The password and userID to my free recall, my organisation and judgement, are long forgotten and the sentence prompt no longer makes sense. But in the sounds of the kitchen, amidst the hiss and the whirr, the familiarity of the roll can lead me in unexpected and delightful places. The ingredients come to me in the moment. The meditation begins as the chopping board clunks onto the bench. The ingredients reveal themselves slowly at first then with increasing speed, and a dish is prepared. Ask me what I am cooking or the names of ingredients and I draw a blank. But suddenly the spell is complete and a finished dish appears.

I don't know if I'm a good cook, but I enjoy it. My family tell me I bring the flavour to the food and I'll take that. My bloated shelves of bottles and spice containers are testament to my desire to bring that flavour, as is my extensive herb shelf in the garden (or is it table? At three pallets long and one pallet wide it's probably is more the later). All I need a starting spot. A cut of meat or a jar of spice and suddenly the path appears and the cooking begins.

I cook when I can. When my everything aligns and my body says yes. I push myself and cook when I feel the need to create.  When the need for a break from the monotony of managing my body reaches tipping point. My lap top may play music in the background, but most of the music flows in my head, singing of cinnamon and cardamom, lemongrass and basil. I break from the laptop. From electronic connection. To just exist in the moment of domestic bliss that is preparing a meal or baking a treat.

I have a seat on wheels to help out. And husband and son to lift and test. I am told I use ALL the dishes. But that's what they're for. Why bother in hauling them from house to house only to sit in drawer or cupboard? Might as well get them out for a run and, well, thankfully the cook doesn't clean.

The leftovers go into the freezer for the times I am too unwell to cook. Into the next day's work lunch or re-purposed into yet another meal. It feeds my youngest when he comes off a long late night of waiting tables. It is a snack to pick at during the day when I can stomach only small mouthfuls at a time. The scraps go to the compost, to the very fertile worm farm, and our perpetually ravenous chickens. The cycle continues. The compost and worm wee give nourishment to my vegetables and herbs, and the chickens share a daily bounty of body warm eggs. The Ouroboruos at work in our small suburban backyard. Collect, create, devour, lost in the joy of preparing food for those I love.

My break is happening. Without decision. Without lists or resolutions. I'm sure there was a lead up, a process, maybe I was too tired to notice, but it's here now, seemingly birthed fully-formed and I'm embracing the moments.

I have wound down so I can wind my way back up again. A Summer hibernation. Curled up under airconditioner vents and surrounded by crumbs of tasty Christmas goodness.

The pumpkin has come out of the oven and sits cooling on the stove top. Deep orange with golden brown corners. The olive oil bubbles and glistens speckled with salt and black pepper. Soon it will join basil and garlic, ricotta and sage. The penne will tumble in boiling water which my husband will lift and drain. Followed by slow satisfying movements as weak hands swirl it through thick orange sauce. It will be topped with mozzarella and parmesan and roasted until a golden golden crust forms.  The smell will drift throughout the house and out onto the evening winds. Carried to neighbours human and animal. And on to cow-filled paddocks and passing galahs.

My break is quiet and perfect.

And much needed.

My brain rambles and my body starts to send the first signs of needed rest. I mark the time until I can find my way back to pillows and sheets, content, edible alchemy completed and stowed away.

I'll live my break while I gather strings of cheese and pasta on silver tines. I'll plan some time outside tomorrow to cuddle a chook or run my hand through the chocolate mint. Or not. Breaks don't need a lot of planning. They don't need the strain of timelines and events. They just need to be embraced in whatever form they take.

Today's that's pumpkin and a shower. Netflix and sleep.

And listening to the rain as the last of the light fades from the sky.

Tomorrow?

Well, that's a world of possibilities I am yet to discover. I'll just go with the flow.

Michelle

Paul Kelly's "How to Make Gravy" seems an appropriate musical accompaniment. For those OS, this is considered an Australian classic, one of many by Paul Kelly and one that always makes me a little teary every time I hear it.

Heat

[Image: I'm slumped over resting against the roller door and bracing against the white wall. My hand is extended holding my walking stick. I am wearing a long tan skirt, white t-shirt and green jewellery. I am half in shade, half hot sun. You can't see my face for my red hair which has fallen forward.]



I can hear more than feel the breeze coming through the open door. Beyond the dusty fly wire the leaves of the trees rustle, disturbed by the ebb and flow of small invisible waves. The security door is doing it's job keeping out not just burglars and miscreants, but the breeze that sends the white roses bobbing outside the loungeroom window.

The dull whirr of the air conditioner is all noise no substance. Evaporative cooling, cheap to install and useless when there's even a touch of humidity in the air. A loose print bangs softly against the book shelf and the waist high fronds of the Bangalow palm in the entryway shudder. Freyja lies listless on the floor. Her discontent clear in growled mutterings and halfhearted attempts at movement. The heat stubbornly maintains its hold on the house.

Not to say outside is that much of an improvement. Clear blue skies look straight out of a travel advertisement. Photogenic grey-green gums screaming Australia to an overseas audience. You can feel the breeze, but a moment in the sun is to feel an oppressive weight upon my whole body.

The heat is here and my world shrinks.

A body that cannot cope with heat is a body not designed for the Australian climate. I hear the politicians argue about climate change in terms of economies, in terms of fossil fuels, in pontific terms that only they seem to truly believe. But never the human cost. Never what it will mean to those of us whose bodies are already struggling in the heat of today, let alone the heat predicted in 50 years time. Whose worlds collapse in upon themselves each time the mercury rises.

Heat intolerance is isolation. 

It is claustrophobic. 

Yesterday I dressed to go up the street only to realise that the time required to do all my and my son's errands would far exceed my ability to function in the heat. Not that he wouldn't push me in my old wheelchair. Not that some of the shops aren't airconditioned. But the drain of the heat. From the shuffle from the house to the car. The heat in the mobile greenhouse that serves as transport. The move from car to shop. In and out. Over and over. Each minute in the heat sapping strength. Not just from that day but the subsequent day and the day after that. The heat takes out credit for all the days after. And it never repays.

Heat

It holds me down. It suffocates. It seeps into all my pores and weaves it's way through bone and flesh. Stealing the strength and the functioning. I move through slow setting concrete. Dragging my limbs, my lungs, my mind. It's harder to think. It's harder to interact. My focus sharpens and wavers. I end up stretched too far from the smallest effort. I react like an injured animal when spoken to. Teeth bared, sharp words spit as the remnants of my reserves slip from flaccid fingers. The tendrils of heat reach deep until an amorphous agitation is all I can feel. Brain and body no longer able to find a path out.

From my lowered vantage point on the lounge, a small side window perfectly frames a patch of blue sky and swaying gums. More appealing than the prosaic view I have upon standing where the same window affords a view of red bricks that form the back of our garage and a grey paling fence, but none the less isolating. Spring and Summer days may be beautiful but they mean chest pain and weakness, greying vision and shaking hands. They mean existing under ineffectual ceiling vents, devouring Hydralyte icypoles and the mind numbing, only slightly cooler, four walls that allow for some semblance of functioning. It means peaking out windows for a hint of the world. Short forays into the backyard to check on the chickens and back to the darkened house to listen to the dull rattle of loose prints and breeze through tree leaves. It means a ruthless dissection of time and reserves. Logistical analyses and bitter disappointment.

I can go here. But not there. Not two the same day. Not two consecutive days. Is it evening or day? How far? How long? How much? It always comes back to the cost.

18 to 22C the magic span of time where I function these days. Above or below I am a mess. And now we are set for months of above. Months of missed events and missed opportunities. Regrets and apologies.

I feel the weight in my bones and my heart. My sluggish mind plods along unable to find solutions.

It's 3pm and I am still in my pjs. Showering and dressing no where in sight. The temperature hovers the high 20s and I melt further into the brown leather. I'm supposed to be at an event at 5:30. It's a beautiful Spring day. Not a cloud in sight. A perfect beach day. An in the garden day. And a punishing day if your body is no longer capable of compensating for even a small rise in the ambient temperature.

I hardly sweat now. Even on the 40C+ days. A new medication I started earlier in the year means I now have at least a handful of odd patches where the nerves put in a half-hearted effort, but not nearly enough to cool me down. I feel like my chickens on the back door step, puffed out and puffing. Beaks agape. I chomp though electrolyte icepoles as they chomp their way through the fish gut iceblocks I just put out for them. Only to slump down again to await the evening drop.

The heat is here to stay and I will get through it. Just like the last 11 years. I'll step out into the world in short deliberate bursts and hopefully ED avoiding outings. I'll gaze out the open windows and listen to bird song through dusty flywire, while icepacks slowly melt on my neck. My world will be smaller and heavier. The burden for stepping outside greater. But I'll sip a G&T under my red umbrella in my back yard. I'll listen to the clink of the ice cubes on glass and feel the condensations drip down my wrist. I'll smell the mandarin peel as the oil slowly infuses the clear liquid. Chickens will be coerced into long cuddles and I'll pick cherry tomatoes off the vines in the garden beds. I'll lie on pillows and watch fairy floss clouds disappear as they pass over the edge of the red material above my head.

For a while my world will be small and my connections tenuous. I'll exist until the leaves start to brown and Autumn announces it's arrival in cooling temperatures and fire-coloured leaves collecting on my doorstep. And the reawakening will be celebrated.

Michelle

It's not just a step

[Image: Handwritten sign sticky tapped to the glass in a yellow door. The sign reads, WHEELCHAIR RAMP AVAILABLE. PLEASE ASK AT COUNTER, with a cartoon of a ramp over two steps. (source)]



I enjoy going out to eat, even if it's one chip and a couple of Ondans. I like going for a glass of wine, sitting and chatting, mostly at Mr Grumpy as he sits and nods and uh huhs, in all the right places.

Lucille is loaded on the back of the car, her cherry red cover a bright spot in the rear view mirror. I head out of the four walls that make up 90% of my week. Legs, bp, energy particularly unobliging but I have Lucille who allows me to leave the house with independence, to participate in the world. I head out on a Friday night like half the town. People enter pubs, restaurants and music venues. There's laughter, orders are placed, tonight's live music duo start to set up. I head out only to find a step.

It's just a step.

I should have rung ahead. I should have checked. Again. Again. Again.

There's a portable ramp.

Just ask.

Not that there are any signs to let you know it exists.

But I can't go through the front door. It's around the side in the tiny alley where you can't really manoeuvre. They'll move the bins, and the chairs, and the mop and bucket stored down the side.

Everyone is overly solicitous and the crowd of onlookers gawk as the spectacle unfolds.

Do you need a hand? No. I'll just...the hand reaches across ignoring my response. They pull and push. Complexity increases. I'm right. Let me just...I now negotiate the armpit and the body. How to fit between door frame and arm and body now towering over me, and also miss the toes that are now in the only path I can take?

There's applause. Or "a good on you" "well done."

I feel the tightening in my stomach, the fake thank you leaves my lips. The evening starts as it always does as public spectacle and it'll end in the same way. I can neither arrive or leave on my own. I must ask and wait. I must be grateful. The energy expenditure is huge I am tired before I even see the wine list. The shine is taken from the night. Again. Again. Again.

It's not just a step.



I'm sitting eating my meal, talking to Mr Grumpy and enjoying the scenery and I hear "that thing could take you to the moon!" I grimace then smile, suck down the visceral reaction. I am expected to interact with the older men at the adjoining table. They mean well. I turn away and they keep talking at me, asking questions, making inane comments. They look well pleased with themselves for deigning to interact with the woman in the wheelchair.

It's not just a step.



The step nearly trips me, but my other half and walking stick get me up there. I sit and have a glass of wine. I prepare to leave and an old guy thinks it's hilarious to ask about my "war wound" chuffed with his sparkling wit. He waits, expecting an explanation. I mutter a surly "it's not a war wound" and steady myself to descend the steps tension now in my previously relaxed shoulders.

It's not just a step.




The clothing store has a ramp, but a door I can't open. Someone comes frantically running. Overly solicitous. Sing song voice.

I'm in but can't manoeuvre through the racks or tables thanks to displays that spill over at ground level.

They have a friend, neighbour, second cousin twice removed who is disabled. Do I know them?

It's so good I get out.

So what's wrong with you?

As I head to the back of the store, dress in my lap, it becomes clear that there is no accessible change room. I head back out the door. No purchase made.

It's not just a step.




I go gift shopping. But the first store has a step. The second store? A step and a doorway too small to enter. The third a nice wide opening but a saleswoman who continues to talk to me like she's auditioning for Play School and pats me as I try to just look at the products.

It's not just a step.



I'm at the medical clinic and need to use the loo. But the door's too heavy. The short wall to conceal the room makes the turning circle near impossible, well if I want to keep the skin on my fingers. I need assistance to open the door to the accessible loo. I need it once more to get out. The Clayton's accessible loo seems favoured where ever I go.

I roll into the GP's room clipping the too small doorway. I can't get up onto the table. The pity looks start. The pat.

I roll out once more to pay at the desk I can't see over.

It's not just a step.




My husband goes to park in the accessible bay. Only someone is there. We drive on by because we can't see if there is or isn't a permit. Drive on by until we can find a spot somewhere, far away from our destination, where he can get my wheelchair off and around to my side of the car.

We pass the bay next to our destination only to see the car has no permit. But they're only going to be a minute. They'll move if someone needs it. Screw you and your special privileges. They're missing out because they don't get special bays. Nobody uses it anyway. Disabled people don't go the gym, the nightclub, the bar, the cafe, the.... Disabled people don't go out after dark. Or on weekends. Screw you, there are more important things in the world.

It's not just a step.




Where's your companion? I don't have one. I'm here alone. I'll keep this seat for your carer. I'm here alone. Have you got someone with you, dear? No I'm alone. Oh good on you getting out and about.

It's not just a step.




It's not just a step, or a side entrance, or an infantilising voice, or an entitled attitude to parking bays, or the norm of steps, small doorways, heavy doors, small aisles, or no change rooms.

It's not just the inability to see me as a singular independent woman.

Or the rude and invasive questions.

But that it fits into a narrative comprised of a long list of anothers, that are carried by the disabled community day after day after day.




Another accessible parking fiasco reigns across Facebook.
Another advocate receiving death threats.
Another person is unable to access public transport.
Another forced to prove their disability.
Another can't access their place of employment.
Another misses out on tickets due to a cumbersome accessible ticketing procedures.
Another writing residency that's not accessible.
Another meme about lists marginalised groups that forgets disability exists.
Another advocacy event that is inaccessible.
Another dies because doctors couldn't see beyond their disability.
Another dies at the hands of police.
Another is murdered in a mercy killing.
Another refusal to conduct a Royal Commission into institutional abuse.
Another appalling statistic about violence and abuse gets two lines before being buried under a mound of celebrity articles, or forgotten when citing statistics of violence and abuse in other intersecting groups.
Another story where segregation and subjugation are marketed as inclusive.
Another where people are employed for a pittance while the able-bodied organisers collect their regular pay checks and sit around and pat themselves on the back.
Another stat on homelessness and the ridiculous lack of accessible accommodation both in public and private housing.
Another story indicating we are better off dead than disabled.
Another inspirational school quarterback takes disabled girl to prom, story.
Another demand that disabled people put in the emotional labour to explain.
Another able-bodied journalist, commentator, troll, deciding how we should feel, act, live, or die.
Another saying overtly and more subtly that we could not possibly be the experts on our lives or our needs and wants.
Another.

Another in the long lists of anothers.




Another built on top of all the others before it. Weighing us down. Exhausting us. Until we either lash out or give in.

Because it's not just a step.




It is all the steps that have been before and will be again in the future. It's how they weave together to frame us. How they make their way to the very core of our being. How even when we pride ourselves on our strength and self-assurance, it gets in through the cracks. A putrid water leaching up through our foundations to hit us in the hidden parts of self. And how we grin and bear so much of it because you have to really pick your battles.

A long never ending list. A list that says we aren't welcome. We aren't important. We aren't even an afterthought. We are less than. We are forgettable.

I am tired of asking. Of making phone calls or scenes. I'm tired that I roll past business after business after business that remains inaccessible.

It's that when I speak out I am chastised. Be quiet little disabled person. You are making me uncomfortable. Be grateful. Stop being a victim. God, you're bitter. Smile. Just ignore it. Get over it. You're making me feel bad so screw you and all disabled people. There's people dying in Africa, don't you know. Let me play devils advocate for a moment.




It's that I list off all the reasons we have to be upset and angry, (Disability erasure at it's finest), I get lots of head nodding and agreement. Outrage that bursts forth, then dwindles, is forgotten, and nothing changes.

It's not just a step.

It is that this world remains largely inaccessible to disabled people. Societal and institutional discrimination continues to weigh heavily on our access to not just a shop front, or our ability to go out on a Friday night, but to the societal interactions that most take for granted. A burden that we unequally must bear along with whatever our body may have thrown at us.

It's not just a step and I am tired.



Michelle

Rambles

[Image: a woman with pink hair and wearing floral pjs is sitting on the floor of her bathroom with her head in her hands. Behind her are a grey towel and cream tiles. To her right is the top of a small concrete dog doorstopper she was given many many years ago for her 18th birthday.]

I haven't been writing much but I need to get back into practice so I thought I might as well just empty my head on the page for a bit. Might clear out the cobwebs and help me to get back in the swing. The haze of exhaustion and pain meds is great for rambles.



It always amazes me that I can manoeuvre my body into positions that don't break my sleep. That in the depths of exhaustion I can roll and twist. Flop back and forth until that sweet spot is found. A precision that is broken when my breath loses its rhythm and my lungs sharply overcompensate. Or a slight change in the outside temperature draws the internal warmth across my body thanks to poorly insulated brick and steel. The barest caress of air molecules on skin and I am awoken, gasping and trying not to vomit from the pain. The micro-millimetre of difference between agony and sleep is breached and I am I am frozen.

Move or be moved and agony results. I don't speak for fear of tensing already hyperaroused nerves. I don't speak to further delay the pain that I already know must come. Caught in limbo, knowing that movement will both relieve and crush. The spot in my back and hip that only ever hints at healing takes every opportunity to let me know it is still there. Plotting. Biding its time. I brace, at least mentally, and commit to what must be. Tears and bile rise as I am once more impaled by pain. I mutffle the cry in my pillow as Mr Grumpy sleeps on oblivious.

Four days in bed a necessary evil for a body pushed beyond its limits. The exhaustion, nausea, pain, weakness must be managed. There's no choice in the matter. Fighting through isn't an option at this point. The lead up I played bad patient doing all I should not. Stopping when I know I should is not always practical just as it is not always what I need to maintain a sense of self. But there are draw backs.

Cantankerous. My body is cantankerous. It punishes me for pushing it beyond it's limits. When I acquiesce and rest, it punishes me further. And so my sleep is broken by pain now only relived by standing upright. Standing upright that leads to passing out and all the precursor symptoms that make my daily life a challenge and lead to rest days in bed.

The pain in my lower back and hip are always there though immobility bought about by an overstretched Autonomic Nervous System increases the intensity. I am stuck again where my normal Dysautonomia symptoms are slowly settling but not enough to make being up and about in the house a real option. Just enough for the restless agitation to start up. The unscratchable itch that make me irritable and terse. Offer me a drink or ask me about my day and I may rip your head off. Don't ask and I will poke the irritation like a sore tooth and run through expletives in my head. And the pain spikes as I shift my weight, or pick up my glass of water, or stay still and lose myself in reruns on the screen.

Pain is suffocation. Pain is dropping to your knees as your vision darkens. Pain is waves of nausea, a shot of bile to the back of your throat to make you gag and spasm, shooting off yet more pain. More more more.

Heatpacks. Gentle moves. Pain medication. Meditation. Layers of aid. Layers of nothingness.

I try to read and find myself at the end of the page not remembering a word. I try to write and the words struggle through the concrete thick sludge in my head. I can feel the ramble.

Its icy outside. Spring has begun with icy winds, rain, hail and in some parts snow. Our fledgling vegetables are throwing up flowers. Small purple pea pods begin to emerge. The chickens are all laying. Their egg song fills the air echoing up the sterile dark corridor created by the twin brick walls of our and our neighbour's homes. The sun peaks under the blinds in random five minute blocks. Sharp and blinding. I scroll through photos of surrounding snow fields. Tree ferns bowing as the tiny flakes force them into genuflection. Caramel coloured cows stand in stark relief against their pure white background.

My bedside table is piled with the detritus of illness. Small mismatched cardboard boxes their silver and plastic contents half spill across dark wood. Ear plugs, tissues and empty water glasses. A half-filled dosette box balances precariously over the table edge. The accoutrements of this life scattered across the table and off, reflect the irritation and weakness that have swamped the last few days. In between, the pink and gold hand cream, the small round metal container of lip balm gold embossed on green. A pile of to read books, small ceramics and decorative boxes that remind me of kindness and friendship. Small pieces of calmer waters.

I can see the edge of my shower through the ensuite door and strike a bargain. If I can shower. Just shower. I'll be happy. If I can slough off the film and feel the water on my skin I'll be alright for the next few hours. I'll roll myself up in soft pajamas and pop the top on my handcream so I can smell its warm fragrance. Tomorrow I might work up to slathering it on my fingers. I'll rub the blood back through resistant blood vessels and the mottle that is livido reticularus will retreat for a few seconds. The purple bruise that radiates up from my nail beds will subside and I will breathe in marshmallow and peach.

But for now. I want to feel the heat beat on protesting skin and muscle. I need to stretch as the heat finally infuses my icy body. To loose myself in the sensation and sound. Slump on my plastic chair, head resting on the glass. Submitting to the

The day continues to flow.

My son brings me the freshly lain eggs so I can feel their warmth in my hands.
My skin now smells like oatmeal and honey.
Warmth and softness filters through my being thanks to floral flannelette.

And the sharp edges are worn a little smoother.

Michelle

Where to Buy Fashionable Medical Grade Compression Stockings in Australia.

[Image: a woman's legs lie on some colourful velvet cushions. She wear yellow compression stockings (Kings Cross Yellow, last season's German Juzo colour range and deep red shoes with bow ties. In the distance a white chair and wall can be seen along with a plug, fairy lights and the edge of a couch.]


Here is the fair old land of Oz purchasing medical grade compression stockings, particularly fashionable compression stockings, can be a frustrating and difficult endeavour for a number of reasons.

1. It can be incredibly expensive. Even the most basic of compression styles, particularly if you also want quality and a medium to high medical grade compression level, are going to put a large dent in your purse. 
2. There are few places in Australia selling anything more than the basic beige, black and navy version. Fashionable options can take a lot of time and determination to find. 
3. Compression socks in a range of styles can often be sourced but stockings either thigh high or waist high are not so easy to find.
4. We often have purchase our compression stockings from overseas companies. 
5. With exchange rates at present this can be incredibly expensive.
6. Some companies postage rates are also prohibitive. 
7. There are a number of companies selling compression stockings that are not medical grade compression eg Scholl. They are cheap and more easily accessible but in the end if you are purchasing on the advice of your Dysautonomia specialist you need a medical grade level of compression. (It is suggested that waist high 30-40mmHg are the preferred strength and length for Dysautonomia. However given that many patients also experience abdominal pain a lot of patients still find adequate relief from the use of maternity stockings which have less stomach compression and thigh high options. Additionally 30-40mmHg can be incredibly hard to put on if you have any hand weakness or joint instability and many, myself included, use 20-30mmHg with success.)

So what to do and where do you start?

Australian Companies:

(Please note that this is not an exhaustive list, just a starting point.)

Appliance and Limb Company (now part of Oapl): One of the few local companies selling Juzo compression wear (socks, thigh and waist high, maternity and also arm sleeves and gauntlets) in both the US and German colour series are Sydney rehabilitation company Appliance and Limb Company (now part of the Oapl group). Currently there isn't an option for online sales and you must either ring or email the company. There is also a requirement for a doctors prescription for compression stockings (including the grade of compression). I have used this company a couple of times and while the ordering process is somewhat cumbersome and frustrating at times, it does provide the one of the cheaper access routes to the German range of Juzo colours (see video below).
Update: Oapl will be putting the Juzo in their online shop, with a PayPal option in coming months so the process to buy them should be far more streamlined than it has been.




Sigvaris Australia: Sigvaris have an Melbourne-based shop front where you can both purchase and be fitted for compression stockings. Sigvaris have a selection of four colours currently available (see below) as well as the Allure range (see my review of the Allure here). They also have a listing of local distributors where you can also purchase these versions. Sigvaris also has a FB page and are reasonably responsive.

Compression Socks Shop: as the name suggests Compression Socks Shop stock a large range of compression socks in some amazing colours and patterns. If you are one of the lucky Dysautonomia patients who can get away with socks instead of stockings this company has a large and ever changing range from a number of different brands. They also have a limited range of lower grade (Class 1 or 18-22mmHg) colours (eg Bordeaux is a mulberry colour) and basic colours in a medium grade (Class 2 or 23-32mmHg) in compression stockings in waist high and maternity.

2XU: Australian athletic company 2XU has a limited range of products which range up into the medium range of medical compression (around the 22-30mmHg range and some lower ranges). For those who prefer a more athletic look as opposed to the traditional medical compression stockings these can provide a nice alternative. Additional bonuses with 2XU are that they are easy to purchase both online and in multiple sporting outlets, and even better, they often have sales where you can pick up both socks and leggings at great prices.

Below are some 2XU options that fall in a Class/Grade II or Moderate compression range.
(NB: all of these are footless tights. Depending on how poor your peripheral perfusion is these may not be an option. Speaking as someone who ends up with purple sausage toes or feet from toeless compression stockings and compression tights it is important to consider this aspect of presentation when selecting compression options.)

Power Recovery Compression Tights (20-30mmHg - Firm)
Refresh Recovery Tights (20-25mmHg - Firm)
MCS Run Compression Tight (23-26mmHg - Firm)
Mid-rise Compression Tight (22-25mmHg - Moderate/Firm)
MCS Cross Training Compression Tights (23-26mmHg - Moderate/Firm)

Chemists: most local chemists will offer at least one brand of compression stockings (Jobst seems most popular and was what I was offered first up at my local chemist). Lower grade or non-medical compression can usually be bought off the shelf. However higher grade ones need to be ordered in. Some chemists will offer a fitting service and some will require a doctor's prescription. It's a case of going into your local chemist or giving them a ring to see what they offer. This can be a reasonable starting spot if you are new to compression stockings.

Private and Custom Fitting: there are a variety of companies that offer custom fitting. This can be a good option if your body proportions don't fit well with the structure of mass produced stockings or if you have a specific medical need. It is worth ringing your local OT or Physiotherapist to see what companies are available in your area. Some orthotics clinics can also offer this service. Just a heads up that custom fitting is usually quite expensive. (Oapl and Vennosan are two companies that come to mind for custom compression)



Other Australian-based companies that offer basic brand specific stocking options are:

Bauerfeind Australia:  Bauerfeind Australia offer free postage for the VenoTrain range of compression stockings. I did also find a Melbourne-based orthotics centre Melbourne Orthotics who are able to get Bauerfeind products in if you already know what you want/need.

Venosann

Jinni

BSN Medical stock Jobst products.

International Companies:

The options to purchase compression stockings from overseas are too extensive to list completely here. Instead I'll list a couple of the main companies that are used by local patients. Currently US companies are a little cheaper than European companies due to the exchange rate.

Brightlife Direct: US based company Brightlife Direct offer a wide range of compressionwear including fashionable options from brands including Juzo, Rejuvahealth and Sigvaris. Brightlife Direct have a great social media presence and have been very supportive of the Dysautonomia community. Their blog is also a great source of information on topics such as the best sheers, to how to get the wrinkles out of your compression stockings. They have also been very receptive to Australian consumers concerns about issues such as the exchange rate and postage costs often offering up special codes to help with costs. I have purchased stockings through Brightlife Direct with no problems to date.

Compressionstockings.com: US based Compressionstockings.com also offers a wide range of compressionwear including similar fashionable options from brands including Juzo, Jobst and Sigvaris. I have purchased stockings through Compressionstockings.com with no issues however I have heard others in Australian patient groups who have experienced issues with the company. The main complaint has been in relation to communication. Given that we are in a different time zone getting in touch with the company if there are problems with delivery or product is generally through email and this has proven problematic according to some of the messages I have been sent.

Compressionsale: Similar to Brightlife Direct and Compressionstockings.com, US based Compressionsale also offers a wide range of stocking options. I haven't purchased from Compressionsale but have had favourable reports from other Australian patients who have.

Rejuvahealth: US based Rejuvahealth was one of the first companies next to Juzo that I discovered in my hunt for fashionable compression. Sadly their range of thigh high and waist high fashionable compression has shrunk in favour of an extensive compression sock range (in the photo below is their lovely floral pattern they used to stock. I reviewed them here). You can still sometimes pick up their lovely Black Sheer Dot pattern stockings on the site and on other end of line sites. The main prohibitive aspect of Rejuvahealth is that there postage is quite expensive compared to other similar companies.

A close up of my #compressionstockings from @rejuvahealth (sadly I don't think they make these particuar ones anymore) Who says compressionwear has to be dull or nannaish (sorry nannas of the world I think you should have groovy compression stockings too). These are 20-30mmHg so reasonable compression. You do have to search but there are fashionable options avaliable. And if you have to wear them everyday a bit of fashion helps. Even Freyja can't take her eyes off them. #dysautonomia #chronicillness #disability #compressionstockings #ootd #wiwt #40plusstyle #everydaystyle #disabledfashion #cripstyle #disabledstyle #365dayswithdisability #red #fashion #Rejuvahealth

A post shared by Michelle Roger (@michelle_roger) on Aug 17, 2016 at 12:45am PDT

Tramps Fashion Compression Hoisery: Tramps is a relative newby on the fashionable compression scene. I first wrote about them back in 2016 when they popped up in my searches with what often feels elusive, patterned compression stockings. While patterns and compression can be found in upperlimb brands like Lymphedivas or in compression socks, the compression stocking market has been very slow to adopt any printed options (Juzo do a tie-dyed(US) and batik (German) print, as well as some lover level compression leggings in their Signature range, Sigvaris offer the Allure and Jobst the Ultra Sheer Patterned, Rejuvahealth did for a time offer some great prints.).  Tramps offers the Bryanna Cheetah Jacquard in the 25-30mmHg range and Bryanna High Waist and Jocelynne Hip Hugger is some vibrant colours.

Zulily: US based retailer Zulily can be another source for end of line compression stockings. It's a bit of pot luck what turns up, but if you already have an account then it's easy to check out their compression stocking and compression sock sections.

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.

Private Health Insurance: If you have Private Health Insurance get your doctor to write you a prescription for your stockings. Depending on your insurance provider and how you have structured your scheme, you can sometimes get all or at least part of the cost of the stockings back through your insurance company.

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.

Fashionable Compression stockings: 2016 Update Options and New Tips.

Metamorphosis: marketing Medical Compression as Fashionable and Transforming the Narrative around Disability.

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.

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

Rejuvahealth Review.

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

LympheDiva Gauntlet Review

Fashion blogging is not for the faint of heart

Go forth and good luck with your purchasing.

Michelle

I've been listening to the Waifs while writing so it only seems fair to have one of their songs as my musical accompaniment today. I love these lines every time I hear this particular song.

You say that I shouldn't be so

Vague, inattentive, a law to myself

I guess that I live in a world of my own

And all that I know now is all that I've known

We're getting there.

[Update: a merle Great Dane sits on frost burnt grass. She is wear a green t-shirt and has only one front leg. Behind her is a red garden chair and garden pots and plants. She looks alert but over it. Out of everything my old green t-shirt has been the best thing to cover her wounds and stop bandages from moving.]

This post is the follow up to my last (Filaments) which was the lead up to her surgery.


"Freyja's temperature is always low, so this represents a fever for her."

What is it about vets that they instinctively trust the animal and the readings before them? Try to explain something similar to a medical practitioner and you can see the internal eye roll before they hustle you out the door ignored and untreated. So many Dysautonomia patients often have internal thermostats set outside normal parameters. After years stuck at 38C my body now frequently inhabits the region of 35.2- 35.5C. A couple of my regular doctors believe me, but even as I described back when I was getting regular saline IV's, a nurse despite multiple forms of assessment refused to believe her instruments, or me. Mind you even when I told my pacemaker surgeon that I don't process sedation or local anaesthetics properly, it wasn't until I continually woke up mid procedure and in pain, that I was believed. And yet for Fryeja's vet it's not a stress. She simply believes and believes in, her patients.

It does give me confidence. Not all vets do well with giant breeds. I've seen towering men baulk at touching both Freyja and when he was still with us, Thor. Giant breeds always attract comments about their size ("You should put a saddle on that!"), and it can be off-putting, belying a gentle nature and a breed that still considers itself a lap dog. But practicalities of treating a large animal aside the vet is at ease and just gets on with the job. She walks in comforting and confident and Freyja just goes with the flow. And in turn I feel confident and comforted. I am grateful for that. We go back in today. Maybe I can convince her to give me a litre of fluids and a cortisone shot in my bursitis inflamed hip, when she's done with Freyja's stitches. There definitely seems to be a lot more practicality and in many ways compassion, in veterinary medicine that has been lost in human medicine where all too often the patient is seen as less than, an inconvenience, or even at times the enemy.



It's been two weeks since her surgery, nearly three from the time we walked in ignorant and free from the worry and stress that has permeated so much of days since. And I am tired.

So so tired. But we're getting there.

It's been a rough few weeks and chronically ill bodies don't tend to react well to stress. Life hasn't stopped so we could focus on the one stressful issue. Instead it kept throwing things our way including the sudden loss of my uncle. He was a tough guy. Three bouts of cancer, a heart attack, broken bones and a 70s rock and roll lifestyle that he never really shook. He was a guy who always lived life by his own rules and never mellowed with age. And sitting in front of his casket and listening to his singing and bass playing, quintessential Oz Rock, it felt and continues to feel unreal. And I am still processing. But we're getting there.

We're getting there
We're getting there
We're getting there

I keep reminding myself.
Slow and steady wins the race, right?



Standing in the vet's consulting room going through the procedure for the surgery I was simultaneously trying not to throw up from worry and fighting back tears at the prospect of what lay ahead for her. She didn't know. We were leaving her with strangers to have a life changing operation. We couldn't explain to her. Sucking up the responsibilities of pet ownership is tough when it comes to decisions like these. Realising how much you love the trusting, furry, stink ball in front of you at the same time as you have to watch her go out through the door after signing the paperwork, is even tougher.

Perceptions of time vary depending on the circumstances in which we are living and the stress of waiting for the phone call felt like an eternity. When the vet finally called it was late. It went longer than expected. She did really well. The scans were clear and the procedure straight forward except for the complications of her size.Would we mind if she went home and had dinner before we came in to see her? Of course. Well not really. Emotional brain wanted to scream no and run straight to the clinic and break down the door. While logical brain knew it was already 7pm, that the vet was also on call and working hideously long hours over an incredibly long working week. We could wait, Freyja could wait, and perhaps more importantly, the vet could go home, see her family and have a breather before the emergency after hours consults started to roll in.

Thankfully calm and rational Mr Grumpy was in charge of phone calls on the day.

8:30 pm Freyja was tucked up under a blanket surrounded by hot water bottles and blissfully unaware thanks to the slow steady drip of morphine into her veins. The relief of seeing her was overwhelming. To touch her paw and stroke her muzzle. To have that tangible connection. Then and only then did the vets words seem to take on form. It went well. She was okay. She was in good hands. I went home exhausted but slightly less anxious. Slightly.

Great Danes aren't supposed to be in tiny country vet clinics. Her 58kgs and long limbs meant only just fitting on the fully extended operating table and a room all to herself for recovery. Similarly the next day she was perched on blankets in the middle of the main surgery room. Allowing her company and after a quick look around at the other inhabitants, clear acknowledgement that her bulk would not fit into even the largest of their cages. A small excited whine, thumping tail and waves of relief. Who knew you could be so excited to hear your dog had peed? Who knew as I write nearly two weeks since the surgery, seeing her pee and poo would continue to excite me. This is much of what the last to weeks have involved.



Bringing her home has been both nerve wracking and a relief. I have slept on the couch next to her and also jumped out of bed when I've heard her cry out or stumbling around in the lounge. I watch her and clean up after her. We've wrapped meter upon meter of bandages around her torso. And my bum and legs have gone numb from sitting on the floor next to her bed. I am continuously covered in her hair and slobber. And changing her blankets sometimes multiple times a day due to incontinence. I am tired. She is tired.

But we're getting there.

I find myself speaking in high pitched excited tones. And soft low comforting notes.

Every unsteady pee and poo is celebrated. Ever hop/step applauded.
Every moment of discomfort soothed. Ever stress comforted.

She lays before me in the loungeroom in one of my green t-shirts trying to keep a dressing on her infected drain. We continue to ply her with antibiotics and cuddles and take calls from our vet checking on her progress. She is quieter than normal. In our multiple trips to the vet since the surgery her nervous energy, especially in the presence of other dogs, is gone. I don't know if she's more settled or more over it. Only time will tell. Today we go in again to check the infection and hopefully remove the stitches from the two large wounds that occupy the space left from her now amputated shoulder and leg.

"All I want is to do is go inside and rest and this annoying woman keeps trying to make me walk." * * Freyja is still not feeling great and pretty meh about the world but we have to keep her up and moving if only in short bursts with much rest in between. It's all a bit slowly slowly but we're getting there. Hopefully the antibiotics are kicking the infection in the wound and she'll pick up again soon. We're both tired but hopeful. She's been my companion for 8 1/2 of the last 11 years I've been ill so I just want my energetic, slobbery pup back. * * [Image: a short video of Freyja a merle great dane wearing a green t-shirt walking a little in the back yard on our Winter frost burnt grass. More a hop walk as she continues to learn how to get around on three legs. At the end she flops tired to ground to look longingly at the back door where her warm bed resides.] * * #greatdane #merle #ilovemygreatdane #tshirt #amputeedog #recovery #tired #exhausted

A post shared by Michelle Roger (@michelle_roger) on Aug 8, 2017 at 12:23am PDT

 We're all tired.

But

We're getting there.

Michelle

Thank you to everyone who has sent me and Freyja lovely messages. I keep thinking I'll catch up with them but I realise now it's unlikely. I have read them all but the fatigue and stress has meant all my spare energy has been focused on taking care of her. If you want to keep up to date with how she goes I'll be updating over on Instagram.

Filaments

[Image: A large merle Great Dane, sits on the lap, or perhaps squishes the legs of a woman with dark hair. The woman in a cream cardigan and sitting on a blue and white patterned throw, is cuddling the displeased Great Dane. They are at a beach with big scary waves. They are sitting on sand near a peace of drift wood and a small creek winds it's way out to see in the top right corner.  This is one of my favourite photos of Freyja. She's always been a lap dog and very protective. Though in this case I'm not sure if she was protecting me from others on the beach or seeking protection from the big evil waves.]



I want guarantees. No, scratch that. I need guarantees. I need to know Option A will lead to Outcome B. One hundred percent. No deviations. No messy odds that allow for Outcome C, D and Z to come into play. I am a tantruming two-year-old demanding my due. I want it and I want it now. Rational thought sweeps in and out to be replaced by panic and screams that it's not fair. And it's not. Even when rational me says it's part of life, emotional me is still in the foetal position. The decision's too big. It's all too quick. But still it must be made.

She doesn't care. She sleeps on her brown and tan couch as warm Winter sun streams in through the angled blinds. Blinds that hold a layer of slobber. A layer of oil from nose presses and fur. Light comes through the window whose pane is patterned with overlapping nose prints. The top line of which mark her height as clearly as any notch or biro line on a door frame. No matter how often I clean, her presence is announced from front door to back, in oils, slobber and fur.

Half wrapped in her blanket, legs tucked under pillows she twists awkwardly to look as I emerge from my bedroom. A morning tail wag thumping heavily on the cushion gives rhythm to her excitement. The tangle of limbs uncurl. She flops to the end of the couch in her usual half-stretch half-stand that seems more attributable to an initial emerging from three months hibernation instead of 12 hours over night.

A warm head moves expertly into position. My hand encloses the top and side of her warm head. Eight years of mornings have made the movement automatic. The coffee machine splutters into life and the crack of the container that holds her breakfast leads to the first signs of excitement. Food, her family coming home after an eternity (otherwise known as any period spent outside the front door) and the occasional pounce at the chicken run to watch them squawk and flutter, her main sources of excitement. A rattle of her lead or her desire to let people, other dogs, birds, the crow that likes to sit on the front gutter, or the occasional unidentifiable sound, know that they have entered her domain, the others.

She stops at the door quivering. Bowing, before a stretch elongates her body and she yawn-yelps to calm herself. She waits for me to head through, before a burst of excitement zooms around my right hip and heads to her silver bowl. She's looking great the vet said. Could even lose a kilo or two. Yet the lump of meat is inhaled as if we have starved her for weeks. Suck down the food, quick ablutions and a check that the boundaries are secure, before waiting on the door step to return inside. That's where her family is. Or, more importantly, that's where her couch resides.

Cocooned in the corner of the loungeroom. Soft circular couch. Warm Winter sun. A throne to gaze at both family and the world. Content and unaware.

I want to know we are making the right decision. We had three. One, do nothing, was discarded immediately. The other two are filled with uncertainty that leaves me sleepless and nauseous. The stress of such big, irreversible decisions do not meld well with a chronically ill body. It's all been too quick. Monday just a double check with the vet. Tuesday the bad news. The big bad. The one that left me crying on the phone to the vet, and Mr Grumpy, on the couch, in my bedroom. Wednesday rapid decisions. Friday, tomorrow, surgery.

On Monday when the vet, with her keen eye and calm voice mentioned possibilities, I never entertained it'd be the worst one. It was supposed to be nothing. Benign I was prepared for.  This. This had been locked away in a place where I'd never find it. This was the sucker punch delivered with a calm, sympathetic voice on the other end of the phone. Bad news evident from the first syllable. From the too early phone call. Monday's "it often comes back unclear" replaced by the removal of any doubt and the clarity of the expert eye. "Aggressive," "high grade," "no clear margins," the hole in my stomach growing deeper and wider with each word.

I knew I loved her. I knew but I didn't know how deep it ran. I didn't know how deeply she'd wound her way into my being. I sit watching her sleep and try to catch a glimpse of  the invisible filaments that bind my heart to the smelly, snoring body opposite. They remain elusive to my eye but are crystal clear in the pain that potential loss creates. So big decisions are made.

She's in great health for her age. Well apart from the tumour protruding from her leg. Her heart is strong. She looks great. Apart for the collection of feral cells reproducing at an alarming rate and already threading their way through muscle and tendon. She's in great health, apart from the tumour, though we won't know if it's spread until they scan her abdomen and chest while she's under. She's in great health, if you ignore the tumour that you can't ignore.

It'll give her the best chance. Best chance. Such a pathetic pairing of words. I don't want chance, not even the best one. I want certainty. I want a promise. I want it written in stone. I want to know that when it's all done she'll be back sneaking her head into my hand. That I'll feel the weight of her body pressed against me as I try to hang the washing. That she'll worm her way back into my lap when I sit outside. That she'll still annoy the chickens and and bark at the delivery woman before poking her head between my leg and door frame for a pat and a scratch. That she'll continue to ruin my good clothes with fur and slobber. That she will announce her displeasure at my being out or not getting up early enough, by disembowelling a tissue, or placing items from my handbag outside my bedroom door.

I want to know she'll be okay. I want her to tell me that it's the right decision.

I'm not ready to let those filaments go.

Tomorrow she goes in for surgery and they'll take her right front leg. The leg she holds up to shake hands. The leg she whacks me with when she wants my attention. The leg she touches me with just to make sure I'm still there. Her best chance they tell me. Best maybe. But shit chance, shit option, shitty best chance of all the options. I look at the still growing lump protruding above her ankle, the one that is growing rapidly and now so tender she's not happy even for me to touch. I look at it and know it must be done, even with potential complications, even with the shitty nature that is her best chance. Even if we don't have time to breath between news and decision.

But for today, there'll be cuddles and belly rubs. She'll be my other walking stick as I move around the backyard. She'll give me side-eye when I cuddle one of the chooks, and bark at the workmen across the road. She'll be excited when Mr Grumpy gets home and when the youngest returns after his long trip to the mail box at the end of the driveway. Today I'll pretend and she'll remain oblivious.

Tomorrow we'll trust to the experts. Keep positive thoughts even if at present they are tinged with fear and worry. I'll start breathing again after.

I love my snotty, furry, leaning shadow.
I love the feel of her warm head in my hand
Her weight on my hip
Her continuing belief that she is a lap dog

Even the snot and fur that have been deposited on and in the laptop on which I type.

It's going to be okay.

It's going to be okay.

It's going to be okay.

It's going to be okay.

Michelle

The words - 8th Blog Birthday

[Image: a selection of colourful compression stockings create a figure eight. They sit on a dark brown wooden table top desperately in need of some oil.]



I've been blogging for eight years today.

I have shared 100s of 1,000s of words on this screen. I have 100s of 1,000s more in drafts. Half-formed thoughts, anger and sadness spewed onto the draft screen just to get them out. Disconnected words, floating on the screen trying to find a mate, or a 'the' or an 'and', but none are in sight. Happy words are there too, but they often seem harder. Harder to feel real and less treacle. So those posts tend to sit like a poorly written Hallmark card, waiting to share their joy with others. All the words waiting to be rounded up and directed. All the words that are no longer relevant. All the words that served a purpose. That are no longer needed, though I thank them for their service.

I go back and read earlier posts and wonder who wrote them. Who was that woman? The one that was both bursting with words and emotions. Who felt alone and scared until she found others in the same spot. Who used language that she would never now use. She knows better, she tries to do better. I read those posts and see a reflection of the newly diagnosed patients of today, and tomorrow. A desperation and relief. When you're drowning not waving, and you want one person somewhere to throw you a life preserver and bring you into the safety of your tribe.

I see a development in words and beliefs. The fickle nature of illness, of my reaction to it. Healthy reaction. Definitely unhealthy reaction. My reactions are better now. Or at least most of the time. There are times where I cock up. Again and again. Where all I want is to construct a pillow fort and hide away until the world passes. Where I hide from myself and the aspects I want to rip off and toss away. The parts that are tethered by bungee cord, bouncing back no matter how far I throw them.

I see the change in words. The flow that changed a couple of years ago when cognitive issues passed the brain fog stage to something more. Something that plagues me now as I write, or try to write. Or swear at the screen, my fingers, and my brain. What's that word? That word? You know the word? How do you describe the thing that's naught but a projection caught momentarily on billowing smoke. Hardly tangible to start with just a hint where you hope that that pieces will eventually reveal the gestalt. That hope has a poor hit rate. Maybe 2 out of 7. I walk away, come back, swear, and swear some more. At least that never fails. Swear words are carved in stone and fire from my finger tips and my tongue.

I move away from illness though in truth it never moves away from me. I've been carving out other parts of me and my world. It's slow work but I'm determined. I have written my experience with illness, with disability, with life for 8 years. It served and continues to serve it's purpose. But the frequent posting that was necessary at the beginning dwindles. I continue to write the words. About different things, thingies, thingamabobs. I write, but the pauses, the breaths are lengthened. The need isn't as strong now, although it may ramp up again. Never say never.

But the need to document my ups and downs change as I have changed. I look back and want to change words, I would write my experience differently if I was starting now. But my writing now is built on those old words. On those old thinking processes. On the therapy they provided. I want to rewrite the past, but the past is part of me, those words are part of me.

It's not only my needs and life that have changed. There are names that pop up in the comments again and again. So familiar. And then they are gone. Some who became well and moved on with life. Others who sadly are nolonger here. Regulars who disappeared but still pop in on occasion. Others who disappeared without a trace. I hope they are well and happy. I hope their disappearance meant joy and life. New batches of regulars arise and the community reshapes itself. Friends are made and laughs and commiseration are shared. People pop in and out of lives. Friends who serve a purpose, a need that sometimes we are unaware of at the time. Then they leave or we leave. You drift apart or have a big blow up. Words on a screen can be those friends as can those who read them. And just like a friend they can serve a purpose for reader and writer until they don't.

I sit here today in my pjs. The water I couldn't keep in my mouth as I tried to swallow a fist full of morning meds dampens my dressing gown. The old brain will start to kick in around 3pm if I'm lucky. That's it's usual time. The Winter sun is coming through the blinds leaving strips of sunshine on the brown carpet. Revealing the need for a long overdue vacuum. Freyja snuffles on her couch and a layer of dog hair and slobber covers my keys. Looking at the screen through one eye I pause and wait for the thought that was interrupted by a loud car outside to continue. Maybe it will or maybe it wont. Maybe it'll pop in again at 3pm or not. Maybe I'll scurry around looking for a pen in my bedroom as the thought finally finds it's way back at 11pm just as I think my brain has shut down and I can finally sleep. Maybe. Words are harder these days. But I'll keep trying.



The words have changed and so have I.

Though my tendency to ramble is definitely intact.

Eight years of good, bad, outright crap and the odd shining moment.

Happy 8th birthday little blog.

Michelle


The line I wrote above about drowning and waving always makes me think of this old 80s song. I loved Boom Crash Opera back in the day. I still do.

When you know better, do better.

[Image: black typeface on pink background. Words say Do the best you can until you know better. When you know better, do better. Maya Angelou]



Saturday morning I quickly finished off a new post. The culmination of years of frustration sparked by one of those "straw that broke the camels back" moments. I pushed Publish, hopped in the car and drove to Melbourne to be on a panel as part of The Emerging Writers Festival. I caught a couple of the responses on Facebook, but didn't really look at any of my social media platforms, and no email, until today a week and a half later. My post-travel body is still drifting through the many stages of payback that accompany such trips. And my brain is still thick with exhaustion and looming migraine but I decided I could manage a short time of screen glare. Well if I closed one eye and tilted my head to the side. And could keep down coffee. Much much coffee.

Putting up a post that is a bit more confrontational does come with some predictable risks. You know that it will polarise readers. You hope that it may change some minds. Or at least sow the seeds to begin questioning the status quo. My use of YOU was designed to hit hard. It's difficult to put up the usual cognitive distance that allows a reader to deflect uncomfortable messages when each line addresses you specifically.

Some rose to the challenge. Some did not.

• The largest number of responses gave me an internet high five. There are a lot of tired disabled people and allies for whom my words resonated. 

• There were the predictable number of people who's responses ranged from "you hurt my feelings" to "I'm never going to help a single disabled person ever again" to "Fuck you, you ungrateful bitch." 

Then there were the group that give me the greatest warm and fuzzies, and leave me with hope for change.

• Those who were left feeling really uncomfortable after reading my words, but wanted to know more, who wanted to do better. Who at first sat back shocked. Then processed their feelings and responded with openness. Who approached an emotional and intellectual challenge as a moment to learn. 

In many ways I feel this last group are my people. I am learning. Or perhaps I should say unlearning and learning. About disability, about ableism, about inter-sectional perspectives, about my place in the community and the world at large. I certainly don't get it right all the time. It can be uncomfortable to have that pointed out. But if you are truly open to learning, and positive change, you have to become comfortable with feeling uncomfortable. And if you consider yourself an ally to the disabled community, you have to listen to our voices even when those voices makes you feel sadness, anger or guilt.



I grew up in a very conservative household. One with little in the way of self-reflection. I pushed against it thanks to two extraordinary teachers I encountered in high school, but as kids often do, I mostly toed the party line. After moving out of home at 17 and finding a new world both complex and beautiful, I began a process of growth. One that continues to this day and will continue for the rest of my life.

A lot of that growth was painful. But challenging the safety of a very certain and concrete world view is always going to be tough.

There have been some big changes over the years. World views that are now polar opposites to those with which I was raised. In a way they were obvious and easy.

It is when you believe you are already enlightened about a certain issue, only to realise you have but scratched the surface or may, despite your best efforts, have gotten it wrong, that the real work begins. And it is work. You have to engage. To read. And read. And read. And listen to the words of those with lived experience. And uplift and promote those voices over your own. It takes time and effort. It is frustrating. And will make you recoil at points. Though the recoil is more often at the safe self-image or beliefs you have held, than the new information with which you are confronted. It's tough work. But work that must be done if you want to be a half-way decent member of what is now a global community.

Through the process you need to keep a few things at front of mind:

No one is going to give you a pat on the back for your work. 

Nor should you expect them to. 

It is not up to marginalised groups to educate you. 

It is not up to them to suppress their anger.

To be grateful

To reframe their lives to make you feel comfortable.
or 

Give you a gold star for being 

a decent human being.

This goes for all of us, including myself. For 44 years I have worked and continue to work. That's part of the human experience. The more I engaged with other people, people with life experiences outside my previous frame of reference, I had to reprocess my views. I had to listen.

In reality I did have a choice. A choice to withdraw to a safe bubble that reinforced my existing beliefs. I could choose to be selective in what I read and with who I associated. That's the easy and comfortable path. A path many take. But a path I chose to reject.

It was uncomfortable at times. There was a level of guilt that threatened to overwhelm. How could I have thought that way? Why did no one tell me there was another way? It is challenging to think you know how the world works, and then find there are a billion other worlds you had no idea even existed. And, that your view is kind of shit.

I type here realising how far removed I am from my childhood and how thankful I am for the often painful change it has taken to get to this moment in time. I know my education is far from complete and many more uncomfortable times remain in front of me. I know I need to centralise and prioritise the voices of those with lived experience from a wide range of communities, many of whom I am yet to meet. I need to listen. Really listen. To sit aside my beliefs, examine my privilege, and take on board new information when it arises. If I find there's another way to move through the world, a better, kinder and fairer way I have to incorporate that into my world.

As the saying goes,

"When you know better, do better."

And the next time you know better, do better once again.

And the next time, and the next....




And so we come back to disability. The way society reacts to disability and when disabled people speak, continues to be quite shit. And that needs to change. I am a product of that societal discourse. And trying to reconcile myself, illness and disability has been incredibly tough because of the pity/tragedy/overcoming/bad vs good, disabled person narrative and the way we internalise those negative messages as truth.

The Social Model of Disability: The social model sees  ‘disability’ is the result of the interaction between people living with impairments and an environment filled with physical, attitudinal, communication and social barriers. It therefore carries the implication that the physical, attitudinal, communication and social environment must change to enable people living with impairments to participate in society on an equal basis with others. A social model perspective does not deny the reality of impairment nor its impact on the individual.  However, it does challenge the physical, attitudinal, communication and social environment to accommodate impairment as an expected incident of human diversity.

(Source)

I worked in health prior to becoming ill, yet I had never heard of The Social Model of Disability or terms like Ableism and Internalised Ableism or Intersectionality. Instead The Medical Model which concentrates on impairments and paternalistic views, dominated discussions. And whilst I prided myself on patient-centred practice, I realise now as a patient and disabled person, that my professional and personal ideas on the topic are very different. There are elements of life with chronic illness and disability that I would never have even considered as I did not know they existed. My good intentions fell short. Not that I knew. If I could go back now I would change my practice but it shouldn't take personal experience to create that change. I wish the push for patient and personal narratives had been as powerful at the time as it is now. Because lived experience brings a truly unique perspective that should be guiding both medical and disability narratives. That should be guiding the discussion in the media and society at large.

It was not just my work environment and tertiary education that was lacking. I also had a lifetime of messages around disability and illness threaded through my being, many of them were on speed dial in my head. Every new moment of illness, every new need for help was influenced by those lessons. And I have spent much of the last 10 years untangling them and the harm they have caused.

Ableism is the discrimination or prejudice against people who have disabilities. Ableism can take the form of ideas and assumptions, stereotypes, attitudes and practices, physical barriers in the environment, or larger scale oppression. (Source) 

As a child I was sick. Pain and fatigue, amongst other unsavoury symptoms, were a constant companion from the first day I woke up aged 12 unable to bend my inflamed and swollen hands. I internalised the messages from family, teachers, school friends and doctors that I was weak, morally and physically. I knew I didn't have a real illness, and should shut up and suck it up. Real illness and disability were easy to spot and should be treated with equal parts pity and tragedy. I didn't make the grade with my weakness. Not even worthy of negative illness and disabilities narratives, just derision and constant reference to my pathetic inability to just 'Harden up, Princess". Blame and illness went hand in hand. Even in the classroom when I was unable to take notes or participate in PE, there were no accommodations. I was informed, subtly and often overtly, that I was a pathetic inconvenience.

Internalized Abelism: A practice where disabled people internalize the ideas and prejudices of society that see disability as ‘other’, as something undesirable, as tragic and as something to be shunned if not pitied. This in turn results in the disabled person loathing themselves and their bodies. They inherently see themselves as lesser human beings....(Source)

I held onto those lessons each time illness came my way. I now have the name to describe my experience, Internalised Ableism. And there's nothing like whipping up those negative disability and illness narratives into overdrive, and spending my days and long sleepless nights, in self-flagellation. When in my early 30's my genes really kicked in, I relentlessly beat myself up with those lessons. I thrust the cruel words of my youth at myself and as much as I'm loathe to admit it, at others. Thank goodness for therapy. I'm grateful every day that I took the leap and embraced the process. But I still struggled with seeing my experience clearly. I had finally started to work through a lot of my baggage related to illness but disability was something that I couldn't connect to. Something I didn't feel I had a right to connect to. Even as my level of functioning continued to decrease and I was disabled by both my body and the world around me, I was unable to connect the dots.

Internalised Ableism is a cruel beast. One I am still taming.

And it's a burden that none of us should have to bear.

It took meeting some incredible disability advocates to point me towards a different way of looking at both disability and illness. And in turn myself.

I read their words. I availed myself of the wealth of information available on the internet. I read and I listen. Again and again and again. I did, and continue to do the work. I still don't get it all right and I still struggle with certain concepts, but I don't turn away. We are a diverse group, with diverse experiences and beliefs. And it's a lot to process. Ideas around Intersectionality have also come to the fore in recent years. It's a lot to unpack and learn, but again I read and I listen. Because I want to be my own ally, and an ally to others in the community.

Intersectionality is a concept often used in critical theories to describe the ways in which oppressive institutions (racism, sexism, homophobia, transphobia, ableism, xenophobia, classism, etc.) are interconnected and cannot be examined separately from one another. The concept first came from legal scholar Kimberlé Crenshaw in 1989 and is largely used in critical theories....(Source)

There are amazing disabled people whose voices I needed to hear. They challenged me (continue to challenge me). So often there'd be an element of what they said that in challenging, also articulated my experience in ways that I had never been able to express before. In ways that made my experience make sense. And that has been a gift. A gift I want for others. For those who want to be allies and for those who are part of, or will be part of, the disability community.

I am a proud disabled woman today thanks to those who have shared their words and their experience. 

Disability advocates are writing about their experience, attending conferences, and providing education services. Online communities abound as do personal blogs. If you consider yourself an ally you need to engage. The information is there waiting for you to access. Don't wait for or expect us to educate you. You are but one in a relentless wave of questioners and the emotional labour demanded is exhausting.




I choose to challenge and learn for myself, for my children, for all those who still struggling. I choose to challenge and learn for myself that all our efforts combined can one day change the narrative around disability. That others will one day not experience the same harm. I choose to share my voice, my angry and frustrated words, that others may also feel confident to raise their voice and also share their experience.

And I don't apologise for sharing those words. For sharing my truth.

I understand what it's like to have your views challenged. To have to acknowledge your privilege. To feel the first uncomfortable creep. It feels very personal and challenging. I've been there. We all have.

But that is the point where you can choose to listen and learn, or choose to turn away.

That's on you, not me.



Michelle