Wednesday 27 February 2013

The view from my couch: Renewal with a side of hope.

Technically there are less than two days left of Summer here in Oz, but it doesn't feel it. We have gone from scorching temps in the 40+C's to overcast and stormy, leaving an environment part dry and dead and part oppressively humid. Just enough moisture in the air that the carpet of dead foliage in the yard has started to grow a thin layer of mould. To say it's been foul is an understatement. 

Regular readers know that where I live is normally a beautiful temperate rainforest with a bazillion shades of green. But not at the moment. It is brittle and dry. We live with the constant threat of bush fires and the omnipresent sound of fire-spotting helicopters overhead. It's been a long hot Summer for the whole state and country Victoria has born the brunt of bush fires over the past few months. It seems crazy that in the north of the country my in-laws are once again dealing with mammoth floods and storm cells.

There is a famous Australian poem by Dorothea Mackellar, My Country. I remember reciting throughout primary school and still know it by heart. Even after all these years this time of year and this time of weather always brings to mind the lines:

I love a sunburnt country,
A land of sweeping plains,
Of rugged mountain ranges.
Of droughts and flooding rains.

We are a land of extremes but I love it and I love that no matter what, or how bad it gets, there is always a moment where you know the renewal is beginning. When the worst of Summer is over and you get the first hint of life once more. 

Today as I went to make my morning coffee I looked out the window at my brittle yard. It's depressing given that I am so used to the rich green that is normally there. The air is thick and almost unbearably heavy with unresolved storms that I wish would hurry up and break and bring the blessed relief of rain. The weather and my yard are scarily in sync with my mood. 
 My resilient fushias are nothing but sticks and dead leaves.
The tree ferns which surround the house are more a collection of dead fronds, rather than the beautiful rich green fans which sold me on the house. 
Even my usually hardy lavender is struggling. 

And then I looked over at my dead Oyster Plants....

And there was a small moment of life. 

The first of my Naked Ladies have raised their head. 

A single clean green spike with a head of large, pure white lily heads bobbing in the wind.

Just one.

A bright beacon in my otherwise dead and struggling yard.
The first sign that the worst of Summer may be coming to an end. A sign that maybe, just maybe, I could  feel a little better in the near future, as the heat dissipates and morphs into the more temperate climes of Autumn. That maybe just when you think you can bare no more, there is hope, a promise of better days and endless possibilities. 

Michelle :)

I adore Sarah Blasko. If you don't know her she's a fabulous Australian singer and you should most definitely check her out. I love her cover of Maybe This Time from Cabaret, and it seems appropriate today. Still bummed I couldn't see her when she was live at Hamer Hall with Orchestra Victoria last week

Monday 25 February 2013

Ennui. (Because it's sounds classier than 'Ugh').

When I was working, I'd watch the old ladies with dementia plucking aimlessly at their blankets with small scowls on their faces. Fragile fingers pulling threads from their blankets and the hems of their sleeves. Pulling on the various items around them, they'd spend their days making small noises of discomfort or discontent. They'd be fractious when I went in to say hello or when the nursing staff would try to check their IVs or take their vitals. By virtue of their advancing dementia they were unable to communicate what was wrong, yet all around them were left in no doubt of their displeasure. The advanced nature of their impairment meant that even should they still be able to vocalise their fractured thoughts, they would still be unable to identify the subject of their agitation beyond a vague feeling of restlessness. As I sit here typing I understand them only too well. Just call me Beryl and pass me a boiled lolly. Because this is me today, in all my discontented glory.

Summer has been exhausting this year. More humidity than usual, combined with day after-day of soul sapping 30+C and a broken AC, does not a Dysautonomia-friendly environment make. My body is beyond exhausted and truth be told, I can't exactly pinpoint what is making me feel so out of sorts at this point.

I know the physiological explanations, the dilating blood vessels, the tendency towards rapid dehydration, the effects of barometric changes. I know about heat intolerance and how my anhidrosis contributes to my inability to cool down. But this general malaise is not clearly explained by the realms of science. My fatigue has fatigue at this point and my ability to deal, is nearly non-existent.

I grew up in an area of country Victoria that had Summer's filled with 40+C days. I lived in the top of Australia, smack bang in the tropics, for 7 years, where humidity was part and parcel of my everyday existence and Winter days a lovely 28C. But now, since Bob came into my life, I simply can't cope with the smallest increase in heat.

It gets to the point where there are so many competing sources of feeling unwell that you can't pick where to start, or what to do. It's like some omnipresent fog of malaise where all the various aspects of illness coalesce into one giant super-storm of feeling foul.

I couldn't tell you what is wrong today with any true clarity. I am at the point where it's a case of do I want to throw up, pass out, fall over, have my head explode to finally relieve the building pressure? Do I go sit on the loo, lie on the tiles, drink yet another litre of water, camp out in the fridge? Is it my building migraine or my low bp which is worse today? Or my bradycardia? Or the pain radiating up my legs? Or maybe it's Jeff, my stenosed jugular, who seems intent on sending excruciating pain up my neck and behind my ear? Or perhaps my lower back which I seem to have tweaked yet again as I tossed and turned in the heat of last night? What to pick and where to start? Some days I wish I could just do a reverse hibernation and sleep through the worst of Summer to awake in the more temperate days of Autumn.

The accompanying overwhelming physical weakness makes me want to pick aimlessly at the cushions of the couch and make incomprehensible mumbles of discontent like my old patients. I could fit right in, right about now. A bag of barley sugars, a crocheted blanket and a tube of Ben-Gay, and I'm there.

I am over Summer. I am over the unrelenting heat. The constant oppressive-pressure of the Summer storms. I have always been an Autumn girl and now I am even more so.

Come on Autumn weather and be-gone foul Summer. I'd really like to feel semi-human again sometime this year.


I've spoken a lot about Heat Intolerance here on the blog but this probably explains my experience best Hot blooded, plus it has a shout out to 80's rockers Foreigner, who can you go wrong with that?

Time like this, Henri the cat says it all.

Friday 22 February 2013

I'm a finalist! How'd that happen? WEGOhealth 2012 Health Activist Awards.

Yesterday I woke up to find that I am a finalist in the WEGOhealth 2012 Health Activist Awards, Best in Show: Blog category. I know, I was equally surprised. And delighted. And shocked. And honoured. And slightly confused (well it was pre-coffee and meds, after all). Once it finally set in, there was much squeeing to be had and my eldest found some old and dusty poppers which he promptly let off in my direction (Tip for the day: check coffee mug for streamers post popper popping, the texture and taste are less than pleasant).

Oh and of course celebratory chocolate macrons.

Thank you to everyone who sent lovely messages yesterday and a huge thanks to those who nominated this little obscure blog of mine.

I'm one of those people who rolls their eyes when you hear one of those Hollywood types say "it's an honour just to be nominated", but now I have to unroll my eyeballs and admit it's true. I am honoured that someone somewhere thought my blog was worthy of a nomination. And even more honoured to be a finalist, especially given the calibre of my fellow finalists.

Blogging is a strange pursuit. In reality I am just a pasty, almost-40 woman, sitting around in her pjs tapping away at my keyboard to purge the crazy from this slightly dodgy head of mine. Thanks to my health I've yet to make it to a blog conference and have met few other bloggers in real life. I still have no idea about SEO, or the different types of visitor stats. If I'm honest I keep waiting for the "oops we made a mistake" email. But what blogging does give me, and many other patients, is a voice. Our voice. We don't have to sit around waiting for someone to speak for us. We can share our experiences with an honesty that is often hard to come by. And in that honesty there is connection. And in that connection is relief. There is someone somewhere that knows what I am going through. Someone who can lend their knowledge or their shoulder at need. We can advocate for ourselves or others. We can provide support or raise awareness. We can achieve many things, no matter our level of functioning. Blogging is, in that sense, freedom.

So massive thanks to everyone who has supported me over the last few years. I love the community that has grown around the blog and on the Facebook page. Recently, a reader mentioned that they felt they had finally found their tribe when they found the blog/FB page. That makes me proud in a way I never thought I'd feel. I often don't feel like I fit in the traditional world of health blogging. I am not big of inspiration, I'm frequently inappropriate, over-share, and use the word arse way too often. There's not much in the way of epiphanies and I am more likely to laugh at the obstacles in my life than find mature ways to deal with them. That there are a bunch of other people around the world who approach their illness the same way makes me feel less alone and very happy. That somehow I can provide support and the odd laugh with my words, makes it all worthwhile.

I feel pretty blessed right about now.

Michelle :)

NB: One moment you're riding the high of being an awards finalist, the next you are stepping/slipping bare foot in a huge pile of rank Great Dane slobber. Ah Universe, you keep me grounded.

I've put this Florence song up before but it is one of my favourite happy sing it loud songs so it just seems appropriate.

Florence and the Machine "DOG DAYS ARE OVER" Music Video from LEGS MEDIA on Vimeo.

Thursday 7 February 2013

Well at least it's not.....

(Love Liz Lemonsource)

When you are ill, particularly chronically ill, you are inundated with helpful little tidbits from well-meaning family, friends and even, on occasion, complete strangers. I thought I'd dedicate this post to the one that seems to be a favourite of the well-meaning brigade, and one that really ticks me off.

"Well at least it's not [insert disease or life circumstance of choice]." 

I am yet to work out how this is helpful to the person being addressed. In many respects it assumes that the person has lost complete perspective and is simply over-reacting and whiny. Unless your head is so fully up your own arse that you couldn't pry it out with a crow bar, you know that there are worse things in the world.

No one is immune from loss and illness. We all have tragedies in our lives. Unless you live under a rock you know their is suffering around the world in the form of war, violence, famine and natural disasters, every day. On a smaller scale, there is the personal loss of loved ones and unexpected health and life crises. For myself, I've worked in palliative care. I have worked with women who survived the atrocities of the war in The Balkan's, during the 1990's. I have even helped my sister bury her nine-year-old son. Like most people, I'm pretty up there on the understanding that there are people enduring far worse circumstances than my own. You really don't need to remind me.

When you give someone the "at least it's not..." line:
  • You are being nothing short of dismissive and trite. 
  • You are negating their experience. 
  • You are telling them that they have no right to what they are feeling.
  • You are telling them they have no right to express that feeling. 
  • You are telling them to be silent.
  • You are telling them that their distress is unwarranted. 
  • You are making them feel guilty.
  • You are making them doubt themselves.
Is that really helpful? 

Does it provide any solutions?

Any useful advice?

The simple answer is NO!

Suffering is as individual as those experiencing it. What one person can bear another will find an overwhelming burden. How can you compare such a personal experience? I know that other people are suffering and that for some their suffering is beyond intolerable. That doesn't stop me, or any other person, from feeling overwhelmed, or scared, or sad, or lost, or angry, or any of the other million emotions that arise with chronic illness. It doesn't mean I don't need support. It doesn't change my circumstances. It doesn't make my suffering any less real. And it doesn't mean that I think my suffering is worse than that of another. But, it is mine alone and it's salience can only truly be interpreted by me. Where is that line in the sand that says, yes you finally have suffering worthy of complaint? And who decides what the line is?

The reality is, that whatever anyone's life circumstances, be it illlness, or loss, or...., there will always be someone, somewhere whose experience could be classified as worse.

Negating or silencing someone's experience is not an act of kindness. You do not need to understand someone else's experience to be able to show compassion. To let them speak their truth. To let them release that burden so they can start to pick their feet up once more and take the next step. Compassion costs you nothing but is priceless to those who receive it. 

Chronic illness is a long and often frustrating journey. It has no clear parameters. Some days it is better, some days it is worse. Often you can't predict when either circumstance will occur. We experience loss in different forms, jobs, life roles, financial, social, our sense of self. We experience pain both physical and emotional. We have burdens a plenty to deal with. Why should we also be made to feel that we must justify our right to feel upset or overwhelmed.

I, like most patients, know in many respects I am lucky. I count my blessings each day. But the days it gets too much and I'm barely holding on, a kind word or a listening ear is what is needed, not a patronising reminder to keep silent as others have it worse. 

Think about what you are truly saying when you utter those words. Or you just might find yourself beaten, albeit very slowly, to a bloody pulp by my someone's arms of patheticness.


If people would think before they speak, the world would be a much better place. Sing it Aretha!

Tuesday 5 February 2013

Debbie Downer Post

I don't do many downer posts. Mostly because they annoy me. When I go back and read them weeks later I want to grab myself by the shoulders and yell "Harden up, Princess!" Because at that point I'm over it. Whatever has happened, whatever event has led me to that place, is done and dusted. I have a group of unpublished posts in my draft folder where I have spilled my incoherent emotional baggage. Writing helps me make it through, but only a few make it onto here. And those that do? I often think of them as the blogging version of drunk posting. When my emotions are raw my judgement is a little off. What should probably remain out of the public domain ends up splashed across the screen for all to read. In my more sanguine moments I know that life is hard enough without subjecting anyone else to my moaning and self pity. Will this one make onto the blog or not? I don't know. We'll see. It depends on how much of a "screw it all" mode I am in by the end of my purge.

I am over being sick at the moment. I am tired of the unrelenting nature of chronic illness. I am tired of the fact that at the moment I am not getting a break. I am tired that none of my usual tricks, honed over years of careful trial and error, no longer seem to work. Usually, I have a bad patch, followed by a less bad patch, followed by the inevitable next bad patch, and so on. It's a pattern I've become used to over the past seven years. There is comfort in predictability. Those little lulls make it bearable. They give you breathing space. A time to sit back and collect yourself. To find equilibrium once more, so you can keep on keeping on. But my lull is long overdue and I'm feeling stretched beyond my meagre abilities.

There is only so much you can take before you start to fall apart. Before the cracks start to appear. Before others start to see the cracks, and it gets harder and harder to keep it all together.

I tend to retreat at this point. I move to the periphery of life, only engaging sporadically and superficially. It's a matter of survival. When you're clinging on by your fingernails, the slightest extra bit of stimuli is too much. Silence and alone time are life-sustaining. More than that, they are sanity-sustaining. Kindness or caring from those nearest and dearest is not always a benefit at these times. Part of me wants someone to give me a hug and tell me, "it'll all be alright". The other part of me knows that those words, or worse a comforting touch, will break through the fragile shell of control and result in an unwanted flood of tears and misery. The irrational part of me wants both comfort and to be left alone. The irrational part of me expects my family and friends to intrinsically know this. Despite the fact I can barely understand it myself.

I know I am irritable. Everything and anything sets me off. A little corner of my mind knows I'm over-reacting but that doesn't stop me. Everything sucks. Everything is a personal attack. Every single little disappointment or mishap becomes highly salient. Everything is seen through a negative mindset. Socks not unrolled before they go in the laundry equals a personal attack. The dishwasher not unpacked equals the end of the world. I look at my Facebook newsfeed and hate everyone's perfect lives. I hate that they are travelling, that they are at the park, out to dinner, out to the movies. I hate that their lives seem golden. In my rational moments I'd never think that way. I am happy that my friends and family are enjoying their lives. I would never wish my life on them. And I know no one's life is perfect. That Facebook is a sanitised version of reality. But not in that moment. In that moment every irrational, narky, petty and horrid aspect of my mind comes to the fore, and I hate the world and all who inhabit it. I hate the reminders of a life I no longer have. But I can't stop looking. I can't stop seeing the perfection. I can't stop seeing that the world continues on without me. I can't see the reality because I'm too busy revelling in my misery. I have masochism down to a fine art. And in these moments I embrace it whole-heartedly.

I haven't had a break in weeks. I'm tired. So tired. More tired than I have been in months. My GP tells me I must consider that I've had a jump in progression. Now I can't get that out of the back of my mind. I keep trying to give myself a pep talk. "It's just the Summer heat. I'll be fine when the season changes. I just need to pace myself more. I just..." But in the moment I don't believe myself.

I realised the other day that I have forgotten what it is to be well. I've had health problems ever since I can remember but always there were breaks. Periods of relative good health where I got on with life just like everyone else. But that has now disappeared. I have felt sick and/or been in pain everyday for years now. One of my good days would send most people straight to the doctor or ER. I think that's what others understand least and what frustrates me most. And I realise I don't know how to convey it any more. I have lived so long with illness that I can no longer see it clearly. I play it down, I avoid the doctors with symptoms that would make others panic. I don't talk about it because I feel whingy. So I let things go for longer than I should and don't tell my family about the things that would worry them. I just exist and suck it up and put on my happy face. Not that there's really much choice. But you get weary at times.

I can no longer eat without pain. It doesn't matter if I adhere to my dietary restrictions. It doesn't matter what it is. Even water can trigger the pain now. My weight continues to drop and it is brought up at each appointment, with no solutions to be had. I am back to worrying about passing out each time I go to the loo or shower, although in truth my gastro issues are what worry me most. My general health has deteriorated and weakness increased. I try medication after medication and nothing works. Everything is just hard. And so, like many others, I have learnt to cry into my pillow at night so as not wake anyone, because the pain gets bad and sometimes it's just too much, but I just don't have it in me to talk about it all yet again. It's hard to keep on smiling when you feel dreadful 24/7 and all your emotional reserves run dry.

And I want to just be able to say it all free of judgement (both my own and that of others). Free of platitudes. Free of comparisons. I just want to give it all voice and have someone say, "I get it". No advice. No solutions. No pep talks or sweet words that'll crumble my carefully honed composure. People are uncomfortable with illness. As a society we want to fix others to make ourselves feel better, to avoid feeling awkward or uneasy. We miss the point that sometimes it's okay to just listen and say nothing.

The reality is that whether this is a permanent downturn or just an extended rough patch I will adjust. I always do. You can't live with chronic illness for years and not find a way through these times. It's just the getting there that's the hard part. It's knowing that just like physical health waxes and wanes, so does my emotional reaction to it. I want to be better at dealing with it all, but sometimes it gets the better of me. Sometimes I can't shut out the thoughts and feelings I hate so much. It feels like weakness. Or perhaps more correctly in my mind, failure. I'd never think that of anyone else. But me, that's a different matter in my irrational mind. I am my own worst enemy in that respect. I want to deal better but apparently I'm human, and that sucks.


This song Take Me or Leave Me by The Magic Numbers, is always on high rotation in my maudlin play list. Everyone has a maudlin play list, don't they? You know for the sucky days. Now to toss up if I can manage half a glass of wine in the bath. What's it going to do? Make me sick? Bwahahahahaha.....