Wednesday, 23 July 2014

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.

Tuesday, 22 July 2014

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

Wednesday, 16 July 2014

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.

Tuesday, 15 July 2014

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.


Thursday, 10 July 2014

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.

Monday, 7 July 2014

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.

Thursday, 3 July 2014

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 DiamondSheer 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 compressions 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.

Monday, 30 June 2014

Mid-Life/Illness Crisis

(Ooo forbidden wine tastes all the sweeter.)

*Warning: This post may have been written after a glass of forbidden wine and a shitty day. May be a tad ranty and hysterical. But hey, it's like that some days.

In my last post I mentioned that I was in Over It mode. And I really am. I am over seeing doctors. I am over getting needles stuck in my arms. I am over taking a bucket load of pills each day. I am over not being able to walk out to my mail box. I am over talking about illness. I am over being ill and everything that goes with it.

I hear the cry now.

But Michelle you can't give up. You must have hope.

And this post isn't about hope, or that I've lost hope, or that people continually telling me not to lose hope has transformed the word hope into a four letter word (actually that last one is true. People stop with the hope talk. It assumes that I have lost something when you haven't bothered to ask if I have. And I haven't. Saying it sucks doesn't instantly equal loss of hope. And frankly the more you shove that four letter word in my face the more my stubborn self will tell you where to stick it.) This blog is about the fact that I have reached my 7 (okay 8) Year Itch and am having a mid-illness crisis.

I have played the game. I have followed the rules and towed the company line. I have drunk the Kool-Aid and been a good sickie.

And I'm over it.

When Anastasia sang:

'Cause I'm sick and tired
Of always being sick and tired

I was shouting “I hear you sista! You tell 'em.”

I am sick of being sick.

I am over it and need to pretend for a while. For sanity's sake. I am going to buy my sports car and get a hot young thing called a life. I am going to party like it's 1999, because I was rather well in 1999 (well apart from the whole hysterectomy thing, but hey lets ignore that part and go with the theme I'm creating here, okay? Okay).

I am going to smell some roses. I'm going to ignore some of the appointments I'm supposed to be making. I'm going to push myself in my wheelchair with my arms of patheticness even though I will end up face-planting on this keyboard as a result. I'm going to sip a glass of wine (one may have been sipped whilst I was writing this). I'm going to eat what I'm not supposed to eat. I am going to wear high heels and stand up in the sun.

I am just beyond illness. I am beyond the foulness and the ickiness and the sadness and the life is fricken unfairness. I don't care if it's delusional. I don't care if it makes me a bad sickie. I don't care if my doctors will look at me and go,“well she's noncompliant. Bad patient, bad.”

I am going to get my hair plugs and put on some fake tan. And say a big “Fuck it!”

Everyone else gets a Rostered Day Off or some Long Service Leave. I think I've put in my hours. Done loads of overtime and a heap of pro bono.

I want to do my version of Eat, Pray, Love. Even if it's more stuff myself with chocolate to say suck it to my migraine and fibre rich foods to give gastroparesis the middle finger, worship at the altar of HBO and My Cat is a Dick, and love the softness of my arse-print on the chaise portion of our lounge.

I'm Over it, people. Over it, I say.

Intermission time. Just like back when movies had intermission. I'm going to head up to the snack bar and grab a Choc top and some Maltesers. Maybe some more popcorn with a tonne of butter and salt and a bag of Jaffas. I'm going to roll them down the isles and put my feet up on the back of the chairs.

Suck it, Dysautonomia. Suck it.

I'm taking back life. It's mine I tell you. Not yours. For once I'm sending you the rough end of the pineapple. Bend over and brace.

Because this time I'm living and ignoring and pretending.

And being a bad patient. Bad sickie. Bad advocate.

Screw inspiration. Screw fighting the good fight.

Now I am living, badly, stupidly and totally inappropriately.

Because I can. And because sometimes a dose of stupidly defiant, cut your nose off to spite your face, is just what the doctor ordered.

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.

Wednesday, 25 June 2014

Enjoying the moments when they come: Ella Hooper "The Red Shoes"


(My Dorothy's waiting for me as I went into my last brain and spine MRI.
Photo via Melt Images)


To say the last few months have sucked healthwise may be an understatement. I'm in Over It mode at the moment. I have a stack of referrals to organise and bloods to get done. But instead the paperwork is sitting under a pile of worn-once-but-not-so-pongy-that-they-can't-be-worn-again clothes, a heat pack, and brain-shaped squeezy ball. Get another needle stuck in my vein or binge watch Season 3 of The Walking Dead? It's not a hard decision. Add in that I am on day nine of a headache that has really only differed in intensity from clutching my head and sobbing and sitting on the couch breathing through the pain, and well it's been a funfest of epic proportions. So when friend and fellow patient, Belinda, sent me a tweet mentioning red shoes and Australian musician Ella Hooper I was a tad intrigued.

Regular readers know my love of red shoes. I made my own pair to say "Screw You!" to illness. They are on my header and business card. I indulge my fetish for red shoes at every opportunity, though sadly my quest for red boots continues. And I am wearing my Dorothy's to every medical appointment for a year to raise awareness and funds for Dysautonomia here in Australia. Friend and fellow patient, Kate, even made me a red superhero cape complete with a sparkly Dorothy shoe on the back. I may have a bit of a red shoe problem. But it's a good problem, as problems go. So no intervention required.

I have followed Ella Hooper since the mid 90's when I first sat in my car listening to her and her brother Jesse's band, Killing Heidi, on Triple J Unearthed. Hailing from the small Victorian town, Violet Town, it was easy to relate to Ella, as a fellow Victorian, rock loving, country girl. Killing Heidi's, Reflector took off, and both Weir and Mascara became regular features on Australian radio, and our loungeroom. Weir may have ended up as one of those songs where my boys were known to plead, "Really? Not again, Mum." But hey, as a Mum, you get to tell your kids to suck it up until they reach the age where they finally realise that your music choices are actually quite fabulous. (Many music battles have been fought over the years. The battle over Jeff Buckley's version of Hallelujah was particularly hard fought. Whether I crushed their child brains into submission by repeated exposure, or they simply became old enough to realise the magnificence of the song, I don't know. But I do feel it is a sign of parenting done right.) Having watched Ella more recently on Spicks and Specks, and various Rockwiz episodes (love this duet with Dan Sultan), I also suspect she'd be a great chick with which to have a glass of something fermented, or a coffee. And that my friends, is an important factor in music selection.

But I digress. 

Ella put out a call to her fans to send in pictures of their red shoes to be added to the lyric video for her new single aptly titled, *The Red Shoes. Being a top chick and fellow lover of the red shoe, Belinda kindly pointed this out, and I of course sent in a picture of my Dorothy's. And lo and behold, there they are in Ella's video!



The song is cracking and if I could dance without falling over and face-planting amongst my rapidly reproducing dust bunnies, I would. Red shoes aside, she had me at the first burst of guitars and I was sold after the first couple of lines.

I woke up with courage
What else is there to do?
My love don't worry.
I'll put on my red shoes

Perfection on so many levels.

After much in the way of shitty health and general ennui of late, it's one of those little moments in life that make you sit up and smile. It's kismet, baby.

Mr Grumpy had agreed that we could drive to Melbourne to see her perform for the single launch but unfortunately the venue is down a set of stairs in a basement. And as much as I am keen for adventure, zooming down a set of stairs in a wheelchair, whilst fodder for Funniest Home Videos, may not be the best option. After much lamenting of my bodgy weak legs and declaring a pox on both their houses, Mr Grumpy has mentioned that he'd be happy to piggy back me down the stairs so I can go. So there may be hope yet. Will keep you updated.

But in the meantime enjoy the explosion of red shoe magic and cracking tune. Turn it up, dance, and remember to embrace those moments when they come.

Michelle :)

*The Red Shoes is the third single from Ella's upcoming debut solo album Tongues.

Ooo look mine and my red shoe sista, Belinda's shoes. 
And a subliminal flash of Dysautonomia.Woo Hoo!
It really is the little things.

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.