Be quiet little disabled person. You are making me uncomfortable.

I wasn't going to post about this issue. I am still angry so not in the most diplomatic of moods. But sometimes it's write it out, or sit and stew. So writing it is. 

A funny thing happened yesterday. A local radio personality admitted on radio that she had parked illegally in a disabled parking bay at a shopping centre and to compound her indiscretion and cover her crime, she affected a limp so people would think she was disabled. Cue laughter. Well laughter on the radio program. Not in the wider community. Especially not amongst disabled people and their allies. Those who complained were referred to as a "lynch mob" by the offending radio presenter this morning. Apparently the disabled community was "incited" by a fellow radio presenter, who rightly took offence to not only her actions, but segment in which it was the subject of much mirth, and called her on her behaviour.

Because we need someone to tell us when to get angry. We'd never work it out ourselves.

Her response this morning: "Now I need to point out I wasn't imitating a disabled person I have far more respect for them."

Well apart from the affected limp so people would think she was disabled and not question her illegal use of a disabled parking space. Or that she thinks a visibly discernable, stereotypical disability is the only type of disability there is (but that's a whole other post).

And those who raised their objections are named a "lynch mob".

After putting it to air on her own show and having a good laugh about it all.

Apparently disabled people should sit back quietly and smile like good disabled people, and not call her out on her ableist and illegal behaviour. How dare we be offended? How dare we react?

By calling responses a "lynch mob" she misses the greater point(s) and relegates what are reasonable objections to her behaviour to irrational mob mentality. And frankly, just fuels the fire.

It places her in the role of victim.

It downplays the difficulties and discrimination faced by disabled people everyday.

It downplays our right to voice our disgust when someone not only takes a parking bay designated to make the community accessible for those with disabilities, but also mimics disability and then laughs about it all.

Is she really surprised that the disabled have a voice and can use it? That we have minds and can formulate our own opinions? That we know how to use social media? And that we are no longer content to sit back and accept the ableist behaviour of the wider community. No matter who the perpetrator or the level of their transgression?

Her reaction plays into the idea that disabled people should sit back impotently and wait for others to speak and do for us. It plays into the idea that we should sit there smiling and grateful for the crumbs and pats on the head doled upon us by much of the wider community. It plays into the idea that we are incapable of having our own voice.

Admittedly the disabled community was already a tinderbox waiting for a spark. The current political and community discourse surrounding disability in Australia has reached a low of late. The loss of the Disability Discrimination Commissioner. The ceasing of funding for the only mainstream media voice for disabled people ABC RampUp,  attacks on the Disability Support Pension and labeling of recipients as lazy and scroungers in the mass media, mixed messages about delays to the rollout of the National Disability Insurance Scheme, to name but a few, have all led to a feeling of deep disrespect and outright hostility towards the disabled community.

Admittedly this is not the most outrageous or serious offence against our community. The appalling figures on violence against the disabled receives little to no airtime despite the seriousness of the issue. But this presenter's actions represent the more subtle, casual disdain for the disabled community that many experience every day. And in many ways these so called lesser offences are the foundation stone that allow all the other serious transgressions to occur. We let this go and it makes the next offence easier to bear. We let this go and it reinforces that these casual events are okay.

We are "told it's a joke, it wasn't directed at you personally, I was laughing at me not you, I like disabled people, I have a cousin who's disabled, stop being so sensitive, get over it, PC gone crazy, people are starving in Africa, war in the Middle East," etc.

Shut up and smile for the photo op disabled person. We like our disabled inspirational or pity worthy. Not pissy and noisy. You make us uncomfortable when you point out our ableism. You make us uncomfortable when you show you have your own voice. Sit back and let us tell you how you should react.

Sit back down while we tell you, you've made us feel bad.

I, like many, live with disability everyday. I live with the limitations and difficulties of my disorder 24/7, day after day, year after year. My family lives it with me. I have jumped through hoops for a disability parking permit. I jump through hoops to get minimal help. I have to prove my disability. I have to make my way in a world not designed to accommodate those of us with disabilities. I deal with judgement and disdain every day. I am told how I should behave and what I should say and how I should deal with my disability by those not living my experience.

I am entitled to my outrage. I am not a lynch mob. I am a woman with a disability who is sick and tired with the pervasive attitude that I am lesser, that I am other, that I am incapable of seeing blatant ableism when it occurs, and that my life and your reaction to it is fodder for laughs.

You may not understand my outrage. You may not understand what you did wrong. But that is your limited comprehension and empathy. And it doesn't make your behaviour any more palatable, or my outrage any less valid.

Apologies after the fact only when you are called out on your behaviour are meaningless.

Apologies that seek to excuse or minimise your behaviour are equally meaningless.

Apologies that seek to place you as the victim are insulting.

We have heard it all too many times before.

It shows that at heart you still do not understand why your behaviour was inappropriate.

It shows at heart that you do not appreciate the offence you have given.

In this case it shows that neither the perpetrator, the bystanders on the day, or the radio station who did promos based on the event, understand the offensive nature of the behaviour.

I am tired of having to explain and educate.

I am tired of fighting for simple respect on top of my dealing with the challenges of my disability.

Every time these events occur we see and interpret them through our lived experience. We carry a life experience marked by the general feeling that we are seen as less and other.

If this presenter and others like her cannot understand that, I am sorry for them.

As someone appropriately shared on Twitter last night.

"The standard we walk past, is the standard we accept."

I will no longer walk on by.

Michelle

*I did just want to add I do not agree with comments that have brought her child into the discussion or the use of some of the derogatory names that have been thrown around today. This does not add to the important dialogue that needs to take place and only creates further discord rather than respectful and meaningful discussion.

The Art of Standing Still

(Mocked by Meerkats. What pesky human? You can't stand? Bwahahahahaha. source)

As I stood next to the television in our bedroom turning it on and off, the failsafe way to reset its permanent glitch, I felt my legs buckle. Enough time for a panicked "Shit!" to register in my mind before my knees met the wooden side of the tall boy with a thump. I hung perilously between the tall boy and the standing mirror beside. The standing mirror which tilts with the slightest pressure. Before my grip is compromised and I'm down on my knees on the carpet, head swimming. Two seconds of standing still and my personal glitch had been activated. And I am left panting, head pressed against the tallboy forcing back tears of frustration whilst wishing I had vacuumed my bedroom in the last century.

The three metres from bed to television had been traversed with care and the occasional list to the left. More complex than it should be, but doable. The initial stand, from bed to feet-on-carpet-and-upright, always the tricky part. The head rush. The moment of disorientation. The frustrating mid-step of sitting on the edge of the bed for it to pass before standing and repeating the same shifts in consciousness. But if I can get my legs moving I can keep upright long enough to reach the television, or on a good day, the kitchen. Those steps a cakewalk when compared to those few moments of standing still.

Before I was diagnosed, when my body was in those early days of glitching, I never stood still. I was a twitcher and a leaner. When I would pause in the corridor to speak to a fellow staff member I would move my weight from foot to foot. I would progressively pump my leg muscles, a trick learnt from lengthy military parades (fainting and sticking a bayonet in a fellow parade member tended to be discouraged). I would move my arms and at times, lean against a wall or any available table, trolley or bed. My body instinctively compensating for my failing system long before I knew there was a problem.

My work required a lot of standing. I would stand at bedsides, when providing inservices, or writing in medical files. I would stand in corridors. In tiny consulting offices when the limited chair space was taken. In line for coffee at the cafeteria. In elevators, at filing cabinets and photocopy machines. And if I had lucked out, in line to pay the exorbitant hospital parking fees. As time went by, my inability to undertake this one simple act impacted on all aspects of my work. 

I spent much of my time getting up close and personal with floors throughout the hospital and in gutters outside in the carpark. I would walk from a patient's room to my office leaning against walls and keeping going by strength of will alone. Ignoring questions from colleagues as I stumbled forward, focused on the desperate need to reach my office. I'd get into my office leaning and half sliding on the door frame. Slamming the door shut before making my descent down the wall to the floor. Hopefully keeping any food or fluids on the inside rather than the panicked reach for my bin or the sink on the side wall.

I spent time checking my shoes or dropping pens, just so I could stop standing and crouch down to a more palatable position. I was an expert at looking for things under desks or in the lowest drawer of the filing cabinet. In group photos I would sit in front or kneel at the side. No standing photos for me, especially in those last few months. Or the day I first collapsed at work. One hour before a photo taken for the hospital newsletter shows me leaning on a desk next to our head of dietetics, because standing was just too complex.

Apart from the duration of my feasible standing time, little has changed. As things progressed I would be the woman checking her bags on the floor, or that oh so interesting book on birds on the bottom shelf, whilst in the line at the post office. Then it was window sills. Amazing how much of your bum you can fit on those tiny ledges. Or more than one gutter outside a fish and chip shop or hairdresser.

And now. I sit in the kitchen, on the bathroom tiles, in the laundry, and under the hills hoist out back. I have a chair to cook with. A chair in the shower. A chair near the backdoor and the front. I can leapfrog my way from chair to chair throughout the house. And I have my furniture and wall walking down to a fine art. Keep those legs pumping, just don't stand still. 

In life we stand from the time we get up until the time we go to bed. Brushing our teeth, in the shower, at the coffee machine. Making dinner and folding laundry. At supermarkets and post offices. Concerts and sporting events. Standing, and in particular standing still, are part and parcel of daily existence. That something so fundamental and so easy should now be so hard, seems farcical. And yet that is where I am.

My body's glitch means that the most basic of activities is beyond me. If only I had a switch like my television to reboot my system. A quick fix to a problem both simple and complex. 

And now as I lie here with my television glitching yet again I shudder at the thought of repeating my earlier efforts. 

I have lost the art of standing still. 

May be time to just listen to some tunes on my laptop. Who needs to watch the abs of Christian Bale in Batman, when I can listen to some 80's glory. I'm Still Standing by Elton John is coming up on the play list.

Wry laughter seems appropriate right about now.

Michelle

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $2,000, keep donating and hopefully we can reach $10,000.

Collect your scars and wear them well.

We are all a product of our past. The things that happen to us.
The things we do. The way we interpret them.
The power we continue to give.
We are a product of wounds and scars held together by good times, many or few.

I've been thinking a lot about the past. Being stuck in bed will do that to you. Nothing but my thoughts are active. My limbs too weak to tap away on the phone or keyboard leave me to ruminate.
To pull apart and review with fresh eyes. A past of decades, years and months.

The past is continuous and fluid. Each second experienced becomes past in a heart beat. No neat lineal path. But a collection of events, some leapfrogging others to link then to now. Peeled away and re-stitched to other events in varying orders as more is understood. As we better understand others.
As we better understand ourselves.

My idea of good and bad unique to me. A matter of perspective.

A matter of choice and chances, made by myself and others.

Looking back I wish others had behaved better. Looking back I wish I'd behaved better.
It goes both ways if you're honest.

Wounds happen. Scars cover them. Some scars are better that others. Some never fully heal and others become part of the landscape.

Don't talk about it. It being, anything.
You don't talk about that. Don't share. Don't speak up. Be quiet.
That's embarrassing. No one wants to hear about that. 

The 1980s were a different land. You didn't talk about illness. You didn't talk about family. You didn't talk about things that happened to you or your friends. Secrets whispered in the dark to girlfriends, or more often hidden from those who unbeknownst to you lived the same life and had the same problems. Wounds were gathered with alarming regularity and varying severity, but always hidden from public view.

You didn't talk about anything that mattered, that shaped, that broke, or mended. You hid it all and stuffed it down. And the universe laughed at your efforts. And the more you stuffed that down the stronger it became. Shaping you in ways you were unaware, or at least you stuffed down any semblance of awareness that dared to try and break through. The way you thought about them was warped by the times. Warped by lessons internalised since the earliest days of memory.

And if you did think about it. If you did feel. You told yourself it was wrong. That no one else thought like you. That you were weak. That there was something wrong with you. Shame born of silence.
A burden born by all yet experienced alone.

Breaking through that has been a hard road. I would start to speak and then withdraw even further. I would sit back whilst others spoke and say nothing of my own experience. Fear of judgement still shaping my interactions. Even now there are things never discussed. Some forgotten until something in the day-to-day clicks and it comes into awareness. Some that just sit there waiting to be shared but being pushed back down. Not yet. Not the time. One experience at a time, thanks.

The scars of life.

They shape you.

They shape how you think about yourself.

They shape how you think about others.

Shame and weakness. Never being good enough. Never trusting others.
They are the burdens I carry. They are the burdens that many carry.

I'm not sure when that began to change. I'm not sure why. I do know that it's an ongoing process.
An emotional cha cha cha. 

But instead of letting that past define me. Instead of letting all the bad shape me. I chose to see it as a blueprint for what I don't want. I want to remember the past. I need to remember the past. Not to dwell on the times I felt less, or the times I felt scared, or sad, or lonely. I want to remember the past to shine a light on the now.

I can't change the past. I can't change the hurts. But I can begin to heal them. I can chose how I respond. I can choose to see them as part of my story but not all of it. Plot points in the overall theme. I will acknowledge them not hide from them. And I will try to check myself and the power I give them.

For every failure there is a little thread of healing. Because every time I let it out, it is a victory. A triumph not seen before. Some scars take more time than others.
Their eventual healing all the more meaningful for the struggles faced.

I am my past. A past I am slowly learning to own. Forgiven not forgotten.
A marker by which to fully see my achievements.

I am still here and I am still kicking. I made it through. I made it. And I continue to make me.

I will speak my mind and my heart.
Sometimes with fear, but always with conviction.
I will speak to share, to heal others as much as myself.

I will collect my scars and wear them well.

Michelle

Lesson 26 in Living with Dysautonomia: Sending an Email with Brain Fog.

Step 1. get phonecall from cardio's office learning that files you sent months ago never arrived and a referral not sent off.

Step 2. say you'll send the pdf ASAP so referral can be sent today.

Step 3. spend 1hr trying to find pdf file.

Step 4. realise you've been spelling doctors name incorrectly for past hour.

Step 5. send email without attachment.

Step 6. don't worry you get a fail to send notice.

Step 7. think it must be twitchy mail program close and re-open program.

Step 8. send again.

Step 9. failure notice again.

Step 10. try from other email account.

Step: 11 another failure notice.

Step 12. contact husband at work to send for you.

Step 13. forward email attachment to yourself instead.

Step 14. resend this time to husband with attachment at his address.

Step 15. moment of inspiration "I wonder if I misplaced a full stop, or misspelled a word?"

Step 16. ah yes that pesky full stop in the middle of the a and the u.

Step 17. retype and send without attachment again.

Step 18. send follow up full email with attachment and sorry note for being brain fogged.

Step 19. email husband to say don't worry all sorted.

Step 20: send email to self not husband. Twice.

Step 21: berate technology, myself and the universe for every bad thing that has ever happened.

Step 22. receive confirmation email from cardio's office. Cry with relief.

Step 23. fall into comatosed, drooling heap on lounge.

Michelle


Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $2,000, keep donating and hopefully we can reach $10,000.

Tiny steps in tiny tasks.

My health rollercoaster seems to be more of the driving rapidly over a heavily corrugated dirt track variety, than one of those gentle older versions like the one at Luna Park, here in Melbourne. Bah. I'm still over it. No matter how much I protest otherwise. Always look on the bright side of life, from Monty Python's The Life of Brian, keeps playing in my head. But I keep getting stuck on one line "life's a piece of shit, when you look at it," pithy, no? Still I keep plugging on. Little things. Broken down into even littler things. Broken into atomic level things. That's the only way forward at the moment. But technically it's forward. And I'll take that.

Yesterday I got out of bed and went out to the garden.

(Note Audrey II sitting on my table. 

A lovely and thoughtful gift from my ladies for when I presented at 

The Emerging Writers Festival back in May.)

I rocked my pj, bed socks and son's thongs combo look. I hear it's all the rage in Paris.

I grabbed my trusty Great Dane shaped walking stick.

And made my way over to the over to the bushes by the side fence. 

I trimmed off some of the berries from the tree. Flowers are in short supply mid-Winter so you take your colour wherever you find it.

Made my way inside. Put my bounty on the kitchen bench. And went back to bed, just a wee bit exhausted. 

This morning I got up and made my morning brew. I looked at the berries on the bench and decided that today I'd take the next step.

I grabbed some old bottles from my bottle/vase collection above the stove, and filled them with water.

I trimmed up the sprigs of berries.

And popped them in the bottles.

I grabbed my old green Depression glass sandwich dish. Part of a much loved collection.

And popped it all together on our dining table.

I sat back with my coffee and admired my work. Two days to get there. Tiny steps in a tiny task.

And I smiled.

Michelle :)

This is really a random track that makes me smile. It's off the somewhat obscure and rather obviously named The Acoustic Alternative Album (2007) compilation album, which has many gems.


Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $2,000, keep donating and hopefully we can reach $10,000.

The long and winding road to Acceptance.

(If only the road to acceptance was this straight. 
And the bumps in the road as small as those tiny corrugations.)

I've had a few people message me lately asking how I came to accept being ill and all it brings. I've written about it before, but long-term readers will know that acceptance and the way I react to being ill isn't really a steady path. It's not like a twelve step program. It's not clear and straight. It is punctuated with ups and downs. Sucker punches and dark valleys. And moments of shining light and joy. Living with chronic illness is living with constantly moving goal posts. Just when you think you've got it sorted, WHOOMPH, it pulls the rug out from under you and you have to claw your way back. Acceptance walks hand-in-hand with a special form of grief that only those with chronic illness understand. And if I had to say one thing about acceptance, it's that there are no easy answers or short cuts.

I am better at accepting that illness is part of my life 95% of the time. But every now and then something arises to smack me back down to the ground, often sticking the boot in for good measure. I can tell myself or others to just be positive, or whip out an inspirational quote or three, but sometimes that just won't cut it.

The last six months have been a rough. Healthwise I've had more setbacks/exacerbations than I can count and more frustration and disappointment than I really wish to acknowledge. In December when I realised I could no longer move my toes on one foot, it was the final straw. And I ended up in my bedroom sobbing into my pillow. With illness there are points you reach where it is just too much, and this was one of those. At those times the only thing left is a big black hole that feels like it will never be filled. And the only thing that stops the tears is when you are simply so exhausted from the crying you fall asleep. Since then the exacerbation has meant that physically I've gone backwards and the toll emotionally and mentally has been pretty big. I'm slowly digging myself out of it now, but I've cried and been angry and wanted to hide from the world. I have let important opportunities slip through my fingers because I simply couldn't face them, great as they were, and deal with everything else that was going on. I let everything good and bad go by the wayside whilst I used my non-existent reserves to keep a single finger in the real world. There are still tears. And anger. And cursing of the universe. Thankfully there are more good moments now. But it's still tough and requires a lot of my reserves to keep actively seeking and embracing the better times when they occur.

Does that mean I don't accept being sick?

No. Acceptance doesn't mean I face those times with pluck and perkiness. But I accept illness is part of my life nonetheless.

So how do I reconcile those moments of sadness or anger with acceptance?

With a little self-kindness and a worldview that embraces more than the black and white we are often sold.

It means that it gets tough at times. The bumps in the road are sometimes the size of mountains. Everest-sized mountains. I can accept that I am ill and curse the universe at the same time. Because life isn't a pithy inspirational meme. It isn't clear or clean or perfect. Acceptance doesn't means things are all rosy. It doesn't mean that you don't get sad, or frustrated, or angry. It also doesn't mean that you are giving up or giving in. I'm not zen 24/7 and if I was I would probably need to be studied, or medicated, or a little of both.

For me acceptance is many things. It was getting to a point where I recognised I was wasting every shred of energy fighting and searching. So much so that I wasn't living life any more. I was fighting and I kept getting worse. And I was miserable because everything revolved around a fight I was so clearly losing. There was no balance in my life. Just a bucket load of burden I'd created for myself. That realisation was my first step.

I did start to actively look for joy in my world. And sometimes that has meant forcing it. I would make myself sit out in the garden when I least wanted. I would turn off my woe-is-me music and put on some belting rock tune. I would make myself simply stop. Illness can be bleak and scary at times. Its easy to become overwhelmed. And to both feed that belief and see everything through that filter. I started making sure I found something good in every day. Warm toast in bed, pretty flowers on a weed, a pretty water glass. Little things. Because little is doable. Really seeing and embracing those moments doesn't directly lead to acceptance, but it helps you refocus so you're in a place where you can start the process.

Acceptance doesn't mean ignoring illness (although I may sometimes put my blinkers on and pretend because that's just what you need some days). It means that I do what I have to do to manage my illness. I take my pills and put on my compression stockings. I pace myself and use mobility aids. I get my pacemaker checked and do my exercises. And then I get on with life. Illness is integrated into my life rather than being the central and defining feature. I give it a place of my choosing, rather than trying to erase it completely.

Acceptance isn't an instant process. It also isn't a perfect process. So often we are made to feel that we should find acceptance, fight the good fight, be a perky positive emblem to which all can aspire. But those are burdens we place upon ourselves. We let ourselves believe that everyone else has it all together. When nothing could be further from the truth. We expect we should be the perfect patient. And perfection has no place in illness. How could we ever expect to reach acceptance if we are continuously using a lie as a measuring stick.

I don't necessarily accept that I am ill. But I do accept that illness is a part of my life. It's a fine distinction, but an important one. It's more about putting illness in it's place rather than letting it define me. I live with illness, not despite illness. And in doing so a lot of the power I imbued it with was removed. I made a decision to change my approach. I also decided to give myself some slack.

I accept that there will be times that it is harder than normal. I accept that I will get it wrong. That I will get disheartened and cry, but I won't beat myself up when it happens. Illness is hard. Accepting that it is part of life doesn't mean that I always manage it well. It doesn't mean that I wont cock it up completely some days, or weeks or months. I try and give myself some compassion. Because no one gets it right all the time. 

I am a big fan of getting support, especially in the form of a mental health practitioner. A psychologist or counsellor who specialises in medical issues and chronic illnesses can help you navigate the path, learning the tools to make life more bearable and the difficult times more manageable. We all need to create a personal arsenal to deal with whatever chronic illness we are dealing with. Just like we take meds to help with blood pressure or heart rate, we can use the skills of a psychologist to help with the complex emotions that arrive with illness.

The world of illness is punctuated with words like should and myths of the perfect patient. We are made to feel like there is an ideal to which we should all aspire and if we don't get there we have failed. But life isn't like that. No one has it together all the time. And no one always gets it right. And that's okay. Becoming chronically ill can be incredibly challenging. And learning to accept that illness may be a part of your life for a long time, or in some cases forever, is a continuing process. 

Acceptance doesn't mean perfection. 

Acceptance doesn't mean that you are always peaceful and happy. 

Acceptance isn't static. 

But.... 

Acceptance is about being kind to yourself.

Take away all the shoulds and myths of perfection 

Be kind to yourself.

And acceptance becomes far more achievable.  

Michelle

I break tradition, sometimes my tries, are outside the lines
We've been conditioned to not make mistakes, but I can't live that way

Staring at the blank page before you
Open up the dirty window
Let the sun illuminate the words that you could not find

Unwritten, Natasha Bedingfield

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $2,000, keep donating and hopefully we can reach $10,000.

Truth

(The Two Fridas, Frida Kahlo, 1939)

Illness is hard

It is messy

It beats you down

It makes you want to tear out your hair

and cry into your cornflakes.

It pulls you apart

and discards the parts without care.

Illness doesn't always get better

and it sometimes gets worse.

It isn't clear

or clean

 or cute.

Illness is pain

and vomit and crapping yourself until nothing is left.

Illness is lying on the floor of the toilet

confused and crying, and sore.

It's bodily fluids, selected and tested

and escaping at will.

It's tubes and infections.
It's being stripped bear and examined.

It's catheters and cannulas.

Pacemakers and pumps.

The blinking and beeping of machines

and the tortuously slow drip of the IV into the reservoir.

It's pills and potions and poisons.
It's silence and looks, and the hedging of bets.

Illness isn't a neat package of symptoms

diagnosis,

treatment,

and cure.

It's acknowledging a lack of knowledge

a lack of options

a lack of prognoses.

A hidden path

which may never get clearer.

Illness challenges who you are

It destroys and remakes, over

and over and over again.

Illness lets you believe you've found your even keel

Only to throw a cyclone in your path once more.

It's belief

and disbelief.

Both our own and of others.

Hope and disappointment

a tangle of knots and frayed parts.

Systems, people, bodies 

betrayed and saved in a mire of ambiguity.

Illness isn't heroic or brave or epiphanies and illumination

Illness isn't good or bad

it just is.

But people

people are different.

People are scared and lost and defeated

and strong and resilient and hopeful

all at the same time.

Contradictory and confusing.

They cry and they weep.

They rage and they bellow

They laugh and they mock
They are fallible and imperfect

And people keep going time after time

after time

Sometimes they are brave

Sometimes there is no other choice

And sometimes it is the face they show when inside they are crumbling.

People hold it together

barely

and fully

and somewhere in between.

There is no one way.

No right way.

Illness is unique and personal

and messy and complicated

Just like the people it inhabits

Illness simply is

But people are dynamic, contradictory and splendiferous.

Flawed, imperfect, and resilient

We rise again and again.

We remould our broken pieces.

We deal with shadows and murky depths

And keep paddling

Long after our strength fails.

Because the protagonist in our story isn't illness.

It's us.

Michelle

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $2,000, keep donating and hopefully we can reach $10,000.

RejuvaHealth, Sheer Floral and Opaque Diamond compression stocking review.

Freyja, the photo-bombing dog.

Stockings: RejuvaHealth, Sheer Floral 20-30mmHg Thigh High
Boots: Rivers

Skirt: Rivers
T-Shirt: Threadless

Black undershirt: Metalicus

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

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

I love my Juzo Soft compression stockings and have been wearing them for a number of years now. I have a range of colours and a fabulous tie-dyed pair which I wear on a daily basis (I may need a Juzo Soft intervention). But at the higher end of the price range I know they are out of reach for many (I often look longingly at the current Maize and Midnight versions, before sighing and closing the tab once more). So I have been looking at some of the mid- price range versions of  compression stockings, with two criteria in mind:
A) they must be 20mmHg+.
B) they must be fashionable.

I chose thigh high simply because that is what I wear.

RejuvaHealth: Opaque Diamond & Sheer Floral 20-30mmHg Thigh High.

I have loved the fashion options from US company RejuvaHealth for quite some time. They first caught my eye with funky pink paisley and blue animal print stockings (sadly no longer available) in 20-30mmHg compression. Unfortunately the postage at the time was prohibitive (damn living in Australia) and I simply couldn't justify the purchase.

I have kept my eye on their options over the years to see whether they kept up with the more fashionable options and luckily they have, although the pink paisley is disappointedly yet to make a comeback (I may have to start some sort of paisley inspired campaign).

I have been looking at their Opaque Diamond, Sheer Floral, and Sheer Dot (a similar version of the latter is also available from Svigardis, Allure in a couple of different colours, $92US) options for a while. These options are available up to 20-30mmHg compression. After stumbling across a stockist with reasonable postage (Brightlife Direct: $20 for 3 pairs (I'll review the 3rd, Allegro brand in another post) in less than 10 days) I decided that I would purchase a pair of the Opaque Diamond and Sheer Floral.

Sheer Floral 

These are a very pretty pair of stockings. Much lighter and delicate than what I am used to with either Juzo Soft or Jobst. The pattern wasn't quite as defined as I would have liked given that outside the floral pattern it is quite sheer. Stitching is continuous between flowers so there are definite heavier black lines in between each piece of pattern. Though at a distance this is less apparent.

You can see the lines on this close up. 

No bulky toe seam is also nice. Not all brands get that right.
*They aren't this dark in real life. 
I was halfway through taking them off when I remembered to take a toe shot.

They are shorter in the leg than what I am used to, so I was conscious about my skirt length and they did feel a little precarious. They did however stay up after a full day of use, walking around, doing laundry and cooking dinner. Admittedly, I have rather long legs for my height, and thin legs thanks to muscle wasting, so it does make it harder to find a pair of stockings that fits well. If you have regular or shorter length legs they would be fine.

The pattern comes up quite nice in the Winter sun.

They were comfortable, though I was very aware that I was wearing compression stockings. (That is perhaps one of the best features of the Juzo Soft, which I forget I am even wearing after about 10-20mins.)

They were hardier than I expected given their delicate nature. With a very touchy feely Great Dane and my general cack-handedness I had expected that I'd have runs or pulls in them by the end of the day, but I was pleasantly surprised by how sturdy they were.

They also washed up well with no loss of compression

Really you wouldn't know they are compression stockings.

Opaque Diamond

Photobombed again

These are a much heavier and firmer stocking, similar to the Juzo Soft in texture. The pattern was well defined though not as clear as the picture on the RejuvaHealth website. Even in full sun, unless I caught the sun just right, the pattern was more a hint than distinct lines. Though I will say they did cover my Winter hairy legs very well. 

This time the shorter leg was more apparent, although that may be a partially a feature of the firmer knit of the stocking. They felt far more precarious than the Sheer Floral and the stocking on my right, more wasted, leg did slowly fall down as the day went on. This isn't a problem I've had with other brands. It's disappointing as I was looking forward to wearing them.

Down to just over my knee by the end of the day.
Took them off and put them on 3 different times and still it fell down.
May have to buy a garter if I want to wear them. 

Hmm pasty-thigh shot probably not the best.

With less give in the knit, even after a full day's wear, they were not as comfortable as the Sheer Floral.

As with the Sheer Floral they were quite hardy and neither Great Dane, nor falling into the garden (an unexpected aspect of the review, brought to you by my inability to coordinate my cane, my feet and breathing) ended in runs or pulls.

Again they washed up well, with no loss of compression.

Boots: Rivers

Skirt: Lazybones

Shirt: Lazybones

Cardigan: Just Jeans

Verdict

The Sheer Floral are a very nice option to have when you have to wear compression stockings. And as a special occasion stocking a great option. Not so much for day-to-day wear. They definitely don't look like medical grade compression stockings.

My main issue would be that as a long, thin-legged woman neither pair felt long enough, and the firmer Opaque Diamond, were definitely not long enough for me. Having rechecked the sizing guidelines going up a size would not have solved this problem and would have ended with less compression and only slightly greater length. And a wider thigh measurement would mean they would both be round my ankles by the end of the day.

You will feel that you are wearing compression stockings.

They only go up to a moderate compression of 20-30mmHg. Though in fairness this is not uncommon. Only a few brands offer higher strength compression with any sense of fashion. And over 40mmHg I have been unable to find any brands that offer options outside stock standard colours.

Overall, for their price point $59US, they are a very reasonable mid-range option, especially if you have regular or shorter legs. And I would recommend the Sheer Floral option as a really pretty moderate compression stocking.

Update: I have now had multiple messages from fellow patients who also found these too short, in both the thigh high and full pantyhose version. So it would seem they really are only for the average height or shorter fashionista. Pity as they are quite pretty and we longer-limbed lasses deserve the same fashion options too!

Further reading:

My tips for buying compression stockings can be found here.


Now to rest up and then start my hunt for a decent garter belt.

Michelle

Next week I'll review a pair from the Allegro brand.

A little ditty from the Pulp Fiction soundtrack in honour of my flowery compression stockings.


Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $2,000, keep donating and hopefully we can reach $10,000.

Wordless Wednesday: Reflections.