Compassion starts with the self. #1000Speak

(source)

This post is part of the #1000Speak. 1000 voices from around the world speaking up for compassion, 2oth February 2015. The world most definitely needs more compassion at the moment.
You can find all the posts here.

Self-compassion isn't an indulgence. It is a necessary part of life and without it we can't truly engage with the wider word in a compassionate manner. It's been a hard lesson to wrap my mind around and I am still working on it, but I'm getting there little by little each day. 


I am always amazed by is how a single negative comment can outweigh a dozen positive. Doesn't matter if it's about me personally, the blog, my shoes, how I do my hair, cook a a meal or even my taste in TV shows. If I'm not careful, every single good comment can be swept away with one little ,"you suck". Doesn't even matter who it comes from. Stranger, friend, family, that negative is like a tsunami sweeping away all before it. For some inexplicable reason many of us tend to hold onto those negatives. We imbue them with a power that is hard to dislodge. And ruminate upon them until we adopt them as our own. Self-flagellation at it's finest. All because that one comment tapped into an emotional raw spot in our psyche. 

I still recall every nasty nickname or put down, from primary and high school. I remember every time I was told I was not good enough. Not pretty enough. Not smart enough. Not something enough. Most of the time I can put it in it's place, but every now and then a crack opens up in my defences and someone will make a comment and all those old feelings will flare up as raw as they were back the day when they were first laid into my being. 

Being chronically ill my emotional resources are often stretched and on the days when I am really tired and really unwell those negative comments can end up gaining an importance they simply don't deserve. And being chronically ill you will be told all the ways you are doing it wrong, or how your response, or even you, are essentially a failure.

It's bad enough at a personal level, but for me one of the most heartbreaking aspects of living with a chronic illness is hearing how poorly others in the same position, are treated by those in their life. It's one of those times where I wish others didn't "get it". Where you would expect compassion there is, for many, naught but derision and criticism. Somehow our society has moved to a place where people are blamed for illness. Not just strangers, but family members and so-called friends. All competing to tell us how we are doing things wrong. As if illness, or an inability to recover, is somehow a personal failing.

So often I hear tales from fellow patients where they are told that the way they live their lives, deal with their illness, generally choose to live, are wrong. 

They are too engrossed in their illness. 

They are not trying hard enough. 

They want to be ill. 

Or the old chestnut, "it's all in your head".  

Despite logically knowing that we are doing our best under extremely challenging and often painful circumstances, we are often left feeling guilty or bereft because that little voice in the back of our minds, whispers "maybe they are right?" Somehow we give a monumental amount of importance to the perceptions of others. Others who are not living our lives and have only the briefest and most superficial glimpse of our day-to-day existence. We imbue others with an expert status on a topic they really know nothing about.

A long time ago, I realised that the question I needed to ask myself is, "how do the perceptions of others add to my life?" Do they bring positivity and joy, or do they make me feel worse? And if their ledger came up in the negative I put up boundaries or in some cases, cut people out of my life altogether. 

I cannot prevent others from being critical and negative about me and the way I choose to live my life or deal with my illness. But I can choose the importance I place upon their opinions. 

I can choose me. 

And I am worth it.

I choose to surround myself with those who bring me happiness and joy and who help me see that it's okay to simply be me, warts and all. Those who add to my life, not crush it at every opportunity or when I am most vulnerable. There are some I can't avoid, but I now choose how much weight I give their opinions and put a soul-preserving distance between us. 

None of us can control the actions of others, but we can choose whether we allow them the honour of writing on the slates of our lives. And it is an honour. Our sense of self is precious. Too often we are taught to undervalue ourselves and our needs. We carve the negative in stone, and hold it near and dear. We cherish it and repeat it to ourselves until it is all we can see. And in the end no one is ever satisfied. Not those who criticise. And especially not ourselves. 

In life we have choices, and one is to decide who we allow to define who we are. Have those we allow to direct how we feel about ourselves, really earned that power? Do they add to our lives or do they subtract from that which defines our perceptions of self worth? It's a hard lesson and one that takes work. Sometimes criticism is constructive and sometimes it is not. But by learning to value those who add to our lives and equally put the negative in their place, it can make what is already a difficult time a little easier.

Becoming ill you undertake a crash course in sorting out the wheat from the chaff. You are forced to re-evaluate what helps and what doesn't. You are forced to re-evaluate how you see yourself and how you want to see yourself. There will always be someone who puts you down or tells you that you aren't enough, but those people don't deserve the honour of defining how you see yourself. 

It can be challenging and heartbreaking, but you are worth the effort. Never forget that. 

Cheers
Michelle :) 

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

This photo is from last year when I originally started trialling the Allegro's for a review. After which I promptly forgot I was doing a review. A year later I recalled that I had a half-started review sitting in drafts. So 2nd times the charm and it may be time for some memory testing. 

Stockings: Allegro

Skirt: an op shop find a I shortened

Jumper: Jeanswest early 90's 

Slippers: Peter Alexander Dorothy series, gift
Dog: cheeky photoloving Great Dane, Freyja

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.


Trying to find a good affordable pair of compression stockings can be difficult. I love my Juzo Softs but they are at the pricier end of the spectrum and I have a pang of guilt each time I order them. I have been experimented with a few brands over the years. Juzo, Jobst and Rejuvahealth which I reviewed here. But they are mid range to high cost options. On a whim and because there was a magical Sale sign next to the product as I was browsing, I purchased a pair of Allegro, Microfibre Black 20-30mmHg thigh highs to try out. On sale at just under $35 at the time, but they normally fall just under the $50 mark.

Like previous reviews I wore these for a full day doing my usual activities. Before purchasing I followed the manufacturer's instructions on sizing measuring three times to ensure correct fit.

Allegro, Microfibre, 20-30mmHg Black Thigh High.

The first thing I noticed upon opening the pack was that they feel very synthetic. They also carried a distinct plastic/chemical smell to them which may be problematic for those with sensitivities to various smells. This smell increased as they warmed up from wear. It did reduce somewhat after washing.

Unlike the description on the website and accompanying advertising they were not what I would call opaque. This was particularly evident above the knee where were quite sheer.

The reinforced toe of the stockings was very obvious and high. This impacts what shoes you can wear with them. I tried on numerous pairs of shoes and short of putting on my boots I could still see the thick black line of the toe guard.

Similarly there was a distinct line at the top of the stockings and the silicon band at the top of the stocking was heavy with a clear demarcation between stocking and band. This is unlike other brands I have tried which have a smoother transition from stocking to band.

With a pair of my Juzo Soft for comparison. Note you can actually flick up the hard band.
And I now realise I need to redo my chipped nail polish.

As I found with the Rejuvahealth stockings, they are not for those with longer legs. I am not overly tall at 5'7" but do have long legs for my height. Combined with a fondness for minis I found myself hiking them up all day and being very conscious of how I sat. They did slowly drop over the day but unlike the Rejuvahealth Opaque Diamond I reviewed last year they didn't fall down completely.

The main drawback was that they are particularly hot and for the first time in years of wearing compression stockings, they felt quite claustrophobic. I wore them on a 27C somewhat humid Summer day and felt really overwhelmed. The best thing I could compare it to, is when I had a mud wrap in Singapore many years ago and they wrapped me in plastic and hot towels to encourage the mud to do its magic. The only magic with these was that I managed to keep them on despite coming close to taking them off multiple times throughout the day.

After a full day of wear, sitting on grass, and wooden spools in the yard, falling onto my knees in the wood chips in the garden next to the wooden spool, being sat on by a great dane and doing some basic chores around the house there were no runs or pulls evident. 

This is what is known as the 'Trying to swallow down the vomit sitting in the back of your mouth because you were stupidly stubborn and took photos in the sun on a hot day' pose.

Stockings: Allegro

Dress: Asos, $20 in the sales last year

Shoes: Rubi $10
Dog: yet again a photo loving Great Dane, Freyja

They came up well after a cold hand wash and compression was unaffected.

Verdict: 

You will know you are wearing compression stockings. 

Given that thermoregulation is a huge issue for those with Dysautonomia they may not be the best option given how hot they are. While all compression stockings are problematic in this aspect, and we do make a trade off between being able to be upright and overheating, these are by far the hottest pair I have tried.

They are a cheaper option and stood up to wear and tear in my day. 

However, I would be highly unlikely to wear these again.

***

And just because I love it, and it cost me a sum total of $2 many many years ago, a close up of the necklace I wore.

Michelle

For more on compression wear you can check out

Compressions Stockings from Beige to Brilliant Guide.

Rejuvahealth Review.

LympheDiva Gauntlet Review.

Fashion blogging is not for the faint of heart

Because I did manage to make it through without a vomit and only one fall into the garden and one on the grass, a little celebration music from Sia.

Clap your hands, clap your hands

Turn the lights on my nights

This is life

And we only get one thing, oh

When suck it up, becomes the only pain treatment you are offered.

(Frida Kahlo, The Broken Column 1944)

I sat on the floor of my kitchen yesterday while the coffee machine heated up. I played with the annoying patch of skin in my cheek that was shredded by a potato chip the day before. Fragile skin that tears when I so much as look at a piece of crusty toast. Just another small gift from the gift that keeps on giving, my body. It's my 'loose tooth', I can't stop poking it with my tongue, but it's also a bit of a tell.

I have been mulling over yet another disappointing medical appointment. You'd think the use of the words "glycerine suppositories, followed by the really unfunny dad joke, "But don't worry it's not nitroglycerine. You won't blow up!" would be the low light. But in truth that just made me think of the "Suppository of Wisdom," quote from our delightful PM and I had a momentary internal giggle. Instead, it was the moment that my continuing abdominal pain came up.

Once the joy of chronic constipation was out of the way I foolishly asked once again what could he suggest. And I was summarily told that it was not his problem, and that

Nobody is going to take ownership for that.

I just have to manage it with pain medication.

But not narcotics. Maybe I could up my pregabalin?

But other than that I have to live with it.

He'd wiped his hands of the whole issue.

So I sat on the somewhat sticky kitchen floor, stewing and further wrecking the skin inside of my mouth. A mix of anger, frustration and sadness flowing through while my tongue worked furiously at the shredded flesh in my cheek.

I still don't know where I'm at with this. The pain is constant. It is disabling and it is incredibly, mentally draining. There is something about pain that the medical field really doesn't seem to understand. It is stigmatised and wiped away like an after thought. I watched a timely Insight program about pain last night. The difference in the way patients and doctors discussed it was illuminating. Listening to professional athletes whose pain is managed and supported by the experts that surround them, equally illuminating.

Living with chronic pain and discussing it theoretically, are worlds apart. As one of the speakers said the conflict over the use of disease or condition is largely academic. Those who study and hold the power, fight over the wording, while those who live with it try to get by with therapies that partially work. Dealing with burning and stabbing and zapping and crushing and all the myriad ways it presents.

Out the front of my GP clinic is a large sign that says they will not prescribe drugs of dependence except for terminal patients. In the ED I feel an inherent sense of guilt when I need pain medications, although in their defence I have had little trouble in getting them prescribed when I am curled up in a ball of teary pain. Do I want to take pain medications? The simple answer is no. Just like I don't want to take any of the medications I am prescribed. But equally I know that those same drugs keep me functioning. That without them I would not be able to write this post, or stand, or walk the few steps to my toilet. Similarly, adequate pain control gives me the ability to drive 3 hours to the city for my medical appointments and to sit on the couch with my family without tears. But access is complex. And there is a pervasive idea of the drug-seeker, seen in every patient who has chronic pain. That those who simply don't get over pain and require ongoing pharmaceutical management are weak. Friends who have used pain clinics tell stories of dismissal and blame. That they are not trying hard enough when they don't recover, when I know the lengths they have gone to to try and alleviate their pain. And compassionate pain doctors who become the exception not the rule.

Is there a psychological component? Of course there is. The way we approach things affects how we perceive them. The Insight program demonstrated that. But it is not the only component. And whether it is a factor in maintenance or experience of the pain, or a consequence of the physical, emotional and psychological stress of living with never ending, poorly controlled pain, or a combination of all these factors is unclear. Even the neuroscientist on the program admitted it was extremely hard to treat and we don't yet understand all the various mechanisms involved. Sitting watching him demonstrate the peculiarities of our neural networks I am reminded that little has changed since I undertook my training. And that while interesting, it is how we transform those peculiarities from parlor trick into adequate treatment, that remains problematic.

Patients with chronic pain continue to be stigmatised and abandoned. We are put in the too hard basket or doctors throw up their hands and don't even bother with a referral to a pain specialist. Needing pain management is seen as weakness. And instead of using pain medications to manage pain we must negotiate a system and society that sees such a need as drug seeking and to be avoided. And so I get to cry myself to sleep from the pain on more nights than I want to admit. I manage as best I can with mindfulness meditation, heat packs, gentle yoga, pain meds when I can't take it any more, and spend a lot of time trying to simply suck it up.

Now I have to contemplate trying to find a pain specialist. I get to find one myself as apparently no one wants to take ownership of my pain. In truth I don't want anyone to take ownership. It is mine and I own my experience of it. But I do want someone who can guide me beyond "manage it with pain meds." I want to be able to function. And I don't think that's a lot to ask.

Michelle.

I've put this song up before as it always speaks to me about pain and I love the idea of being able to wash it all away in the river. If only.

I want my child to see the beauty of this place. To walk from the mountains, to the sea.

Those words come from the Fat Freddy's Drop song Hope. It came up on my playlist today as I lay in bed, my body up to it's usual shenanigans. My right arm sprained and protesting my latest attempt to exercise. Grievances heard loud and clear as I tried to comb my hair, or lift my coffee. Frustrations abound. Listening to words of hope whilst cursing my body. Listening to words of hope while reading an anonymous email telling me that by speaking of hardship, I have none. I am charged as having given up and without hope, simply because I dared to say sometimes it's hard. Rather than stuffing it down to be more palatable to others. Not the first and not the last. Because there are those who have an overwhelming need to tell you how you're doing it wrong. And the positive that is hope, becomes twisted and used like a sledge-hammer, by those who don't understand that different doesn't instantly mean wrong.



Hope and I have a contentious relationship. At least the shiny plastic version that is shoved down my throat on a regular basis. My nails on a chalkboard.

Saccharine sweet hope. The hope you MUST have. The hope you SHOULD have. Held down, the syrupy hope poured down your throat until you swallow.

Become ill and you are beaten over the head with hope. The hope of others. The hope that must look a certain way. Sound a certain way. The hope that negates reality. The hope that wears blinkers. The hope that feels fake when I touch it. The MUST and the SHOULD that cause me to dig in my heels and baulk at any attempt to force it upon me. 

Every interaction and the Hope Card is pulled out. To suppose I have none. To be tossed in my face at the first sign that my infirmities might be offensive to others. To silence.

A hope forged of perfection. Perfect sickie towing the party line. Deviate at your own risk.

Hope it's a four letter word. At least the faux variety we are sold.

Snake oil wrapped in fancy words and flashing signs. Promises and panaceas. Fools gold. Diluted and reduced to a buzzword. Until it is barely recognizable and becomes unachievable.




Hope floats.

Bobs and weaves amongst crashing waves and the calmest seas.

A living thing. Exhale inhale. I can feel it inside me. Forged on an anvil and with a gentle caress.

The first hint of a cool breeze moving across my skin.. Promising change after a long hot day.

My hope is mine.

Composed of a hope of laughter and hope of love. Of hope for compassion. A hope of reality. A hope of dreams. A hope to endure. A hope for strength.

A hope no longer required if I allow myself to see that so much of what I want and desire already resides within me.

Hope that I will laugh? Or choose laughter?

Hope for joy? Or choose to find it?

Hope for strength? Or finally see that I have had it all along?  

Hope for better days? Or find the beauty in this moment?

Hope that my children learn the lesson? Or teach them myself?

Hope and I dodge and weave. Come together and fly apart. Evolve and change. We sit quietly together and find common ground. It is rough around the edges, a little worn and weary. But we agree it has a place. We mark the lines. And agree to the importance of its presence.

It is quiet.

It is patient.

It is practical and workaday.

And it fits me to a T.

My hope may not look like others' hope,

                                             but it is mine all the same.

Michelle

Side-effects

"It's on my sheet," he apologised, holding out the A4 list of his appointments again. The fourth time since he arrived. And with each showing and each of his apologies I started to feel a wee bit more like a shit person.

I mumbled a pathetic, "If it's on your sheet, it's on your sheet." And started to pull my frayed nerves together to formulate an apology of my own before he practically ran to get away from the scary lady at number 48.

When I asked my youngest if I had really been that bad, he gave me his best, No shit, Sherlock look, complete with an "Ah, yeah!"

And I died a little inside.

I was an arsehole. I knew it. My youngest knew it. The tradie definitely knew it. Given Freya's furtive glance as I let her back inside even she, my ever adoring companion, knew it.

His crime?

He'd turned up two hours early. Way before I was expecting him. In the morning. Before medications. And sustenance. And showers. And my general working up to people. And I had ripped him a new one.

Well not directly.

I had to hurry to my room to get dressed. And throw Freyja outside. Who had picked up on my less than calm demeanor and taken out a full glass of cordial on the couch with her frantic tail wagging. And in my bedroom as I stumbled around, trying to find a bra and clothes while breathing and standing and taking my meds, I may have dropped a few choice expletives. In our poorly insulated and echoing house.

Because I have inherited a fiery temper and a low threshold for anything these days when I am feeling really poorly or, on that day, in pain.

And because I know I had agreed to a post-lunchtime appointment as I rarely agree to a morning one since I became ill. Had it written in my diary and had planned my usual morning needs to that time. But it was clearly written for a different time on his sheet.

And because I am officially a shit person.

My life has become a tightly wound lesson in logistics. Planning is everything. And spontaneity has become anathema.  And woe betide any who should mess with that tightly wound, holding-it-together-by-my-fingernails, plan. Like a young tradie with a different time on his sheet.

And I acted like a shit person.

If I know something is coming up I start planning. I know how long it takes for my medications to kick in, how long I need to recover after a shower or putting on my  compression stockings. I plan rest the day before and the day of. I psych myself up  to use a set amount of my daily functioning and schedule rest and recovery for the rest of that day. I think about foods to tide me over. That I can potentially stomach enough at that time to keep my blood sugar up without also making me vomit. In between all that I have to negotiate the unexpected symptoms. Is this the morning I wake up with a mouth full of vomit, so must negotiate oppressive nausea whilst also putting on a social face? Do I need heating or cooling? Can I walk to the door or need my cane? Will I need to apologise as I make a sudden departure to the loo to throw up mid sentence? Will my blood pressure to stay up while I clench and unclench the muscles in my legs to remain standing. The mental agility and strength needed to keep my shit together long enough for a visit is hard to explain. The exhaustion of just getting ready can be beyond overwhelming. Especially when you are forced to do it everyday for years on end.

But he didn't know any of that. And shouldn't have to know any of that.

And I am an arsehole.

When he came back a week later for another job I apologised.

Repeatedly.

Because the reasons don't matter.

And because I acted like a complete arse.


Side-effects of long term illness may include:

Exhaustion
World weariness
Becoming jaded
Holding a permanent level of stress you don't always realise
Tightly wound emotional hair trigger
Inability to deal with the unexpected, and

Being a first class arsehole to an innocent tradie. 

Michelle

Take up your spade

(Sometimes you have to find a spot to focus when upside down and inside out.)

Every now and then you stumble over a song and the visceral hit can't be ignored. This is one of those songs. One of those times where life and the planets align, and suddenly every word and every note line up as the perfect salve to the moment.  

I think I need it as my morning song. Especially after nights like last night, that involved a tear on my pillow and trying to fumble quietly in the dark for pain meds, bent in two, and shaking from the stabbing in my stomach. That shit doesn't ever get easier. But you get through it somehow.

I had an ER doctor look horrified when I explained my daily abdominal pain last year. He couldn't believe that I was sitting in front of him smiling (I may have been helped by endone at that point) and talking about it so matter of factly. He looked from me to David and back again, and I was struck by how abnormal my normal had become. You adjust. It's weird but you just do. Sure my normal isn't like other normals but it's just life. You make the most of the cards you're dealt. I don't know if there's a magical formula to get there. I know I slip back and forth with dealing. But somehow I always drag myself back. Battered and bruised but back in the world.

Sometimes it's simply about believing that there are other days and other nights. And that you can drag one foot in front of another. Sometimes its a song that pops up in your life at just the right moment.

Having listened to many of her songs over the last couple of days I am well and truly a Sara Watkins fan. I am late to the party given she's been around for years. Or maybe I came to the party at just the right moment for me.

Enjoy.

Michelle

What if today you chose kindness?

(Frida Kahlo, Self -Portrait with Thorn Necklace and Hummingbird, 1940)

What if you were kind to one person today?

What if that person was you?

What if you said 

I'm enough

What if you allowed yourself to believe 

That perfection is but a lie

And imperfection the masterpiece

That the things don't matter

That the what if's

And the if only's

Are the sleight of hand we use to hide the truth

Lies are told

By the empty sages who howl at the door

The musts

The shoulds

False prophets yell from street corners 

To tell you the wrongs

The failings

The disappointment

The bruises and the hurts

Delivered and delivering.

Empty words 

Bleat incessantly

Beat you down into submission

Ease in agreement

False beauty with talons

Acquiesce and be torn apart

Momentarily placated

Before

The goal posts move

And

Conflicting commands

Come from new corners.

Close your ears to sirens

Bind them

And fill them with daisies

Hold the silence

Listen for the first whisper of truth

Let it grow

The rhythm of the heart writes on the stone

Slow and steady

While the world around ebbs and flows

While beasts scream and claw

And clamber to cover and obscure

It continues below. 

Waiting to be recognised

Waiting to be found

Feel

Vibration and resonance

Know 

That it belongs

The song plays

While the mosquitos buzz

Hear the breeze 

Gentle caresses on leaves above

Eucalyptus to cleanse

Hints of rosemary 

For remembrance and clarity

Scent and sound.

Wipe the oils on your brow

And wrap the leaves round your heart. 

Focus on the melody

Let the words rise

Enough 

Worthy

Okay

Believe.

What if today you chose kindness?

Michelle

#Hospitaglam: Giving illness a very fabulous middle finger.

(Yep blue hair, fabulous frock, bright red compression stockings and sparkly red heels for a pacemaker and cardiology check, I may be a fan of  #Hospitalglam)

I've been stewing over the reaction to #hospitalglam for about a week now. Comments have ranged from supportive to outright rude. And it is the later that have really gotten to me. Both the unwell and the well have slammed the concept. And whilst I must say I am not surprised by the comments of the healthy, I am disappointed by many of the comments from fellow patients condemning her for making their lives harder, or doubting the veracity of her health issues.

For the uninitiated #hospitalglam is the creation of Karolyn Gehrig and can be found on Tumblr, Instagram and Twitter. Gehrig was diagnosed with a form of Ehlers Danlos Syndrome (EDS) and like many of us with chronic illness, is a frequent flyer in the medical system. She wears funky clothes (I have serious dress envy over her pill dress) and poses for the camera in an array of hospital and clinic settings. Many have followed her example, posting various selfies of their own glammed up medical experiences, adding them to the hashtag. The concept came to light recently in mainstream media and the discussions around it have been interesting, and at times infuriating, to follow (why I read comment sections I'll never know. It's a bit like picking a scab until it bleeds. Or watching QandA.) The issues surrounding the accuracy of the information relating to EDS is an issue for another post, but I will say, journalists pick up your game. It's not that hard to find accurate information about this collection of disorders.

When you become a patient autonomy takes a hit. The very nature of disease and injury mean you are reliant on another, a doctor, to direct certain aspects of your life. You are reliant on the expert knowledge of treating teams to direct aspects of treatment and allow access to certain medications. Part of being on top of your disorders necessitates regular reviews and things like blood tests. You must, to a certain extent, suck it up, (as my your control freak nature screams in protest.)

You must accede control to a medical system which trundles on oblivious to your personal needs and desires. The hospital PA doesn't care that you want treatment yesterday rather than waiting for six months. Hospitals feel more production line, than houses of healing as time poor staff are forced to minister to an ever growing multitude. You must tell your story a bazillion times to every medical or allied health professional. You must play the game to a large extent, to have access to care.

The clinical nature of medicine both in the hospital or regular clinic is frequently cold and impersonal. You have to wear backless gowns and bear your body to strangers. You have to lie there while you are pushed and pulled, spoken about rather than too. As much as you pride yourself on being able to self-advocate, and some like myself are lucky to have a husband who is a strong advocate for my care, there are times where you are blocked. A doctor can turn around and say no to a treatment and given the rarity of my presentation, I know I am limited to where else I can go. Choice is a lovely word, but when it is spoken about in the context of health, it negates the realities of issues like geography, finances, availability, and rare illness.

Control is an illusion and when you are thrust into the medical system, particularly as a chronic or long term patient you are slapped in the face with this reality. It's easy to despair. It's easy to feel beaten down and hopeless. It's easy to lose yourself to illness and the world that surrounds it. How we find our way out is complex. The paths we take and modes we employ differ greatly. And we arrive at that place at different times. But if we are to not simply exist but thrive, we must find a way to reclaim control, and our sense of self, however that may look.

#Hospitalglam is one method of taking back control. And one I relate to strongly (Anyone who followed my Clicking My Heels for Dysautonomia fundraising last year, or follow on FB, will understand why I am a fan of the #hospitalglam concept.) But it is not the only one. Gehrig is not telling people what they should do. She is not telling people they must take her path. She is sharing what works for her and the large following she has garnered suggests that there are many people who can relate to her, and her mode of rebellion/control.

I have seen headlines talking about #Hospitalglam, taking the “ugly” out of illness, or removing the “shame.” Neither word deserve a place in the illness narrative, and their use misses the point of the hashtag. There is no shame in illness. It is simply something that occurs as part of life. It doesn't matter how good a person you are or how well you eat or exercise, illness can still come calling. No one wants illness, we don't actively seek it. Nor do we do things to prolong it. “Shame” is closely linked with blame, and if you have been ill for any length of time there will be someone who tells you how you are to blame for you continuing malady, be it your diet, lack of appropriate religiosity, lack of kitten cuddling or refusal to see their favourite swami or eat 85kgs of [insert super food of choice] each day.

We are continuously fed a lie both in the community and through the media that illness is shameful and ugly. Just to clarify NO ITS NOT. “Shame” and “Ugly” are judgement statements. Why should we be judged or internalise such a view, for something that is out of our control? So not only do I have to deal with a debilitating illness but now I must also feel ugly and ashamed in the process? I say F**k that!. Yes there is pain. Yes there is vomiting. Yes we fall over. Yes we require medical aides. We are cut and sampled. Swathed in bandages and stitches. We may need feeding tubes or colostomy bags. Gain excessive amounts of weight due to hormones or treatments, or end up little more than bones in a skin bag due to malabsorption and paralysed stomachs. Our mobility, speech, thinking etc may be impaired. We may be depressed, anxious, dealing with bipolar disorder or schizophrenia. But none of that is shameful or ugly. They are merely the cards we are dealt. To equate illness in any context with shame or ugliness is insulting. And perpetuates damaging stigmas. Again, I say to the media, pick up your game.

In #hospitalglam many see an alternative to the paralysing and disempowering pity narratives of illness. They see an “up yours” to illness and a system both medical and societal that says to be ill you must conform to a certain paradigm. You are either pity worthy or inspirational. But in neither case can you win. There will always be someone to tell you, you are doing it wrong. The classic “you don't look sick” in all it's forms is thrown at those who wish to frock up or pop on some lippy (if only putting on my heels cured my broken genetics). Alternatively, if you stay in your pjs and trackie dacks you are becoming your illness and need to pull yourself up by your bootstraps. Damned if you do and damned if you don't. And these are the themes peppering the comment sections of articles about the hashtag.

Gehrig is not telling anyone what they should or shouldn't do. She is expressing herself in a way that works for her. The media interpretation of #hospitalglam has missed so much of it's intrinsic value. Her behaviour is not unique (though it can't be framed as an inspiration narrative by the media unless it is seen as an abnormality), many frock up in hospital and at medical appointments, but hers has been a more public and organised expression. Given her background in performance art it is not surprising that this is what works for her. But the way she and others have chosen to express their experience is so anathema to the wider societal views on illness that it has been held up as more of the inspiration porn of which the media is so fond. Just like those dealing with disability, the expectations of those with chronic illness are so low, any achievement is seen as miraculous. We are taught that such life events are the end of the world, so many are unable to conceive of a life filled with joy or fabulous frocks and illness. It is this framework which is so angering to many patients who feel like #hospitalglam represents yet another burden to add to their experience, rather than a moment of choice with a bit of tongue-in-cheek sparkle. Thanks media.

Patients are people first. And people are inherently diverse. The way we react to illness varies greatly, but that doesn't mean we can't appreciate or support the way others choose to seize the day. Even if we don't understand or like their particular choice. While #hospitalglam celebrates fashion for it's power to give illness and the medical system the finger, others use art or music. Some form book groups or join support organisations. Some garden. Some engage in cosplay. Some are Trekkies and yet others, shudder, Beliebers. The idea that illness is some sort of end of the world scenario is far from the truth for many. When you are living with an illness or disorder that may never go away you find ways to deal with it, and that will look differently for different people.

Whether other's do or don't like #hospitalglam is beside the point. This is her experience and her expressive outlet. She is entitled to do whatever works for her. Just as every patient is entitled to do what works for them. As someone who wore sky high red sparkly heels to their MRI and bright red compression stockings during their pacemaker implantation, I celebrate her chutzpah and raise my bright red lippy in salute.

Michelle

Confusing

There is nothing better than a Neurologist who takes you seriously. There is also nothing worse than a Neurologist who takes you seriously. Better and worse, intertwined and inseparable of late. Since becoming ill I keep coming back to the idea from F. Scot. Fitzgerald that the holding of two opposite ideas and functioning, equates to intelligence. If that's the case, illness and intelligence are fond bedfellows and I'm some kind of closet genius. I wonder if he'd mind if I added a caveat, to the whole 'functioning' part of the equation. Maybe we could go with 'mostly' functioning. Or replace it entirely with 'still breathing'. I am pretty skilled at stuffing my mind with opposing ideas and breathing. Pure genius. Watch out, Hawking. I'm coming for you.

It's been six months since my last visit. We drove the three hours into the city. The land slowly transforming from flat paddocks dotted with cows and ancient pines, to smoke stacks and gritty pall, and concrete, more concrete and the tang of exhaust which always leaves me with a sore throat. Inner city Melbourne is lovely in it's eclectic nature. Green-leaved trees line the streets and expensive real-estate is set aside for verdant parks (we're not called The Garden State for nothing). Tram lines run everywhere and tight streets, packed with cars are bordered by a mix of everything from Victorian Terraces, Art Deco apartment blocks, and modern glass and concrete monoliths. Car repairers, sit next to surgeons, pubs, cafes, private residences, sex shops and art galleries. A quick glance upward and the sky is seen through the lens of tree branches and a maze of wires. The hospital is like the city. A mish-mash of architectural styles, punctuated with small green oases for patients and families to steal some reprieve from the ravages of the hospital setting. At the entry you can get your yellow fever inoculation, pick up your prescription, buy a Tatts ticket or plan your next overseas trip. A little something for everyone.

A lucky break means a park out front and a small clunking elevator ride up to the fourth floor. The way-too-familiar waiting room is muffled. Part of me imagines a frazzled librarian-type, lying in wait to step out and wave their disapproving finger and send an irritated “Shhh!” in our direction,should we make a noise or, godforbid, laugh. Excitement at an empty waiting room is quickly quashed as my appointment time comes and goes. The elderly man next to me sits head tilted backward sleeping. His wiry arms relax on his bone-coloured trousers as a small throaty snore starts to escape his open mouth. Across from us a woman and her two daughters sit heads huddled together over a magazine on the mothers lap. The well groomed woman to the right coughs and splutters, apparently unaware of the concept of infection control, or tissues.

My Neurologist is friendly. I've seen her for nearly seven years now. She's happy to see me on my feet and not in my chair, but misses my red heels from the past year. I look less gaunt. She loves my dress. We chat about my blue hair and how I've been as we make our way down the corridor to her room.

Oh you know, okayish.

Which of course is and isn't true. But okay is relative these days. Okay means same old same old. Okay means I haven't done a massive nose-dive since I last saw her. Well at least not in the neurological sense. Okay doesn't mean regular-folk okay. Regular-folk Okay and I don't socialise in the same circles any more. Okayish means I'm still broken and breaking. But nothing exciting. Just the usual boring, meandering, decline. I break in all the meh ways.

I stumble and shake over to the table, lay down and roll off my purple stockings. The tuning fork hums somewhere in the distance, even though I can see it is placed directly on my foot. Is it cold? No? What about here? Bend your knee. Relax. Tap. Over excited knee reflexes shoot out and shudder. My feet sit there, unresponsive and unimpressed with repeated attempts to elicit a reaction. Push up. Push down. Extend. Shake and collapse. Can you feel this? What about this? Here? Here? The factory line assessment continues until she is satisfied that my body is intent on being obstreperous.

The listing begins. All the things that are wrong or more wrong, than last time. I am allocated a new word “Confusing.” I add it to my long list of other diagnoses which includes the perennial favourites “Special” and “Interesting” and my other C word, “Confounding.”

Medications are discussed and dissected. Some are agreed upon others discarded. Something to stop me throwing my coffee everywhere? Or flinging glasses? Hmmm not yet, the side-effects outweigh the benefit. Something for migraines. Yes. We'll go with that. Collaborative and fruitful discussions a rarity in the medical world, are appreciated on the odd occasions they occur.

Two new firsts are added to my referral folder: Neurogeneticist and SPECT scan. My request, so I can't complain. One more attempt to find the elusive diagnosis. A label that I can print on a card or whip out at dinner parties. Two more opposing ideas are held in the palm of my hand.

I don't care if there's no label it wont change my treatment. Let me wave my Zen banner for all to see. I am woman, hear me roar my lack of caring.

Sits snuggled next to,

I really really want a concrete label to wrap my arms around. Please give me a label. Someone. Anyone. please......

She doesn't bat an eyelid at my request. My listing, combined with Mr Grumpy's clarifications are enough. It seems things are looking more of the CNS variety as more weirdness comes knocking. My muscles aren't supposed to be doing the things they are doing. My cognition shouldn't be as bad as it's become.

A new script sits in my bag alongside the referrals and I make my way back out the door. We stop long enough in the city to grab a decent coffee and some sushi and quick visit with our eldest. A long black and something for the pain and nausea and we repeat our trip in reverse.

The drive home we are quiet. The rain is pounding. We hit the patch of the drive where black cows stroll under the giant power lines that link the coal pits of the Latrobe Valley and the city. Shirley Manson bursts out of the speakers:

This is not my idea of a good time.

This is not my idea of a good time.

This is not my idea of a good time.

This is not my idea.

CNS hey? So it really is “all in my head.”

Mr Grumpy doesn't miss a beat.

Just think of all the time and money we could have saved if we had listened to that doctor way back at the beginning!

Sometimes you just have to laugh.

Michelle

Rediscovering the Lost Art of Breathing.

The bliss of an empty beach cannot be underestimated. 

I should be writing. I brought all my book notes. The reams of printed paper covered in a multitude of black pen edits. Added words. Heavily crossed out words. The "what were you thinking, Michelle?" edits. Instead I am simply sitting at a rusty, glass topped table on the back porch of a cream weatherboard. I trace the rough edges of the metal work with my fingers and listen to the waves crash on the shore 100 metres to my right.

I can hear birds everywhere. In the scrubby beach dunes, darting in and out to the overgrown pig face and the gnarled banksias. Each day a little group of blue-helmeted finches dart around the brush outside the kitchen window. Little fluffy brown babies, just getting their wings, follow springing from twig to twig. Gulls floating effortlessly on the sea breeze, turns and a myriad other sea birds casually flying over the odd fisherman or float in small groups on the gentle waves near the foreshore.

I'm burnt. On my legs. An odd pattern marked out by dog slobber and the sticky sand that gathered in haphazard patches on my legs. It hurts. A lot. The breeze is kind but still tingles as it passes. Sheets and hands make me yell. It goes against all the Slip Slop Slap messages of my youth and manifests in the odd twinge of guilt. But it is a good feeling. My legs haven't seen the sun in years. They are always covered in compression stockings when I head out. Never to see the light of day. Or they are hidden away in the house with me. Too ill to head outside. But I forgot. I forgot all of that. I sat on the beach and whipped off my violet Size I 20-30mmHgs and stood in the waves propped expertly by Mr Grumpy. I stood there and felt the cool waves hit. One after the other higher and higher. I felt the sand slip from under my feet and rejoiced in the feeling of moving lower and lower, consumed by the fluid grains. When I reached my limit I lay on my beach mat and examined the infinite blue of the Summer sky. I felt the warmth of Freyja's body as she cuddled up close. And the feel of her paw on my leg and her tongue licking the salt off my leg. I breathed it all in. And it was good.

I've walked on the beach. Not far and not for long. But I walked. Slowly. Gingerly. Slipping and sliding. My walking stick disappearing into the loose sand. My youngest a few steps ahead resolutely pushing my wheelchair just in case. I follow the deep ruts left in the sand like breadcrumbs to the biscuit coloured sands we make our own. The soft deep sand up near the dunes and the stable darker form down closer to the waves. I have walked the midline between surf and dune, where the shells and detritus from the sea gather. I stopped and collected. A haul of sea shells whole and broken now lay on the table next to me. Pippies and oyster shells, clams of various sizes and the odd conch. Most I have no name for, but their size, the curve of the edge, breaks smoothed by the endless churning of sea and sand, catch my eye and draw my hand. My legs ache and I've tumbled but it has been blissful.

I have eaten foods I should not. I have downed expensive Ondan to stop being ill and put up with pain. I have eaten ham and turkey and a little spread of mustard pickles. I luxuriated in spinach and pepitas. Walnuts and raspberries. I sat with my family and ate Christmas dinner. And fish and chips and drank wine. I felt sick to my stomach and deliriously happy.

I have laughed with my family. Told bad jokes and endured way too many puns. We have hugged and we have sat. We played board games and paddled in the sea, and walked arm in arm up the dunes. We played cricket on the beach Christmas day. An Australian tradition that I have been unable to participate in for years. I batted. I bowled. I fell over and I laughed. We are staying in a house lent to us by a friend. And Mr Grumpy has gone above and beyond to make it restful and fun. I have been spoiled and I am truly content.

I've stayed up late and not rested. Walked on the beach without compression stockings and failed to hydrate properly. My knees and ankles are swollen from my efforts but I walk up the path from the beach again and again. My family simply smiling and shaking their heads, knowing it's pointless to insist that I pace myself. I have done everything I am not supposed to do and it's been magical. My hair is at angles from sea wind and salt. There is sand crusted in my stockings and on the rims of my wheelchair. I can taste the sea salt on my lips and I've lost hours simply gazing at pristine blue Summer skies. I have lived. I am exhausted and I will pay. But every drop of pain and illness. Weakness and vomit is worth it.

I sit on the cool concrete step out front now. The sun is going down and Angus and Julia Stone sing from my laptop. I can hear waves and laughter. Birds and the gentle sound of the wind through the yukkas in the yard. I can smell salt in the air and see it's mark on the house we have been inhabiting. I feel healed and cleansed. Renewed and reborn. For the first time in a long time I am breathing.

Michelle