Friday 20 February 2015

Compassion starts with the self. #1000Speak

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. 

Michelle :) 

Thursday 19 February 2015

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.


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.


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

Wednesday 18 February 2015

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

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.


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.

Tuesday 10 February 2015

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.


Thursday 5 February 2015


"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.


Because the reasons don't matter.

And because I acted like a complete arse.

Side-effects of long term illness may include:


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. 


Tuesday 3 February 2015

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.