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

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

(source)

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.

Cheers
Michelle

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.

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.

Cheers
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.

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

(Love Liz Lemon, source)

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.

Cheers

Michelle

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

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.

Michelle

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.....

Acceptance is NOT Giving Up

(source)

I'm not quite sure how this is a difficult concept to wrap one's head around. But apparently it is right up there with understanding the finer details of particle physics for many. And when I say many, I primarily mean those who are not ill, yet are apparent experts in how to cope with your chronic illness. Though in fairness there are a small number of evangelical sickies who get mighty upset or feel you are betraying the sickiehood for not acting like everyday is the invasion of Normandy (gosh I get some fun emails). In either case, the idea that someone else should dictate/judge how you respond to illness, shits me no end. Especially, when I'm pretty happy with my life, health crap aside.

Now, if you want to don your camouflage gear and yell "CHARGE" at the start of each and every day, go for it. That's your right. We all manage illness in our own ways, and we are all in different head spaces when it comes dealing with the crapfest that is chronic illness. 

I've been there. I've rocked my fair share of spiffy armour. I've sat on my destrier's back, wielded my broadsword and charged at the fire-breathing dragon that is my broken body. It worked quite well for a while. But there came a point when the fight no longer served a purpose and instead became a burden. It's at this point I needed to re-evaluate my approach and weigh up what was and wasn't working.

If keeping up the fight 24/7 floats your boat, then keep on keeping on, I say. I'll send you my old armour in the post. It's a bit dinted and tarnished but I'm sure it'll buff up a treat. But what works for one, doesn't necessarily work for another. And my priorities are a tad different these days. That doesn't make either approach wrong or right. It's about finding what works for you and understanding that it's healthy to re-evaluate and challenge your beliefs.

I'm sick. I am sick today and I will be sick tomorrow. I will, in all likelihood, still be ill 20 years from now. I have been to see all the top specialists, I've been tested to the enth degree and tried more pills and potions than I can count. I have researched and pestered, and been a relentless pain in the arse to my many specialists. I've more than done my due diligence. And I now know where my health stands without a shadow of a doubt.

I manage my various infirmities with a combination of meds, diet, lifestyle changes, complimentary therapies and sarcasm. Sometimes it works and sometimes it doesn't. I reserve the right to bitch and moan when it doesn't, but on the days it does, I make the most of life. Hell, even when it doesn't, I'll put on my Batman suit and make a fool of myself, because that's more fun than concentrating on the shiteness.

Chronic illness, or more to the point, chronic illnesses, are just part and parcel of my life. As the saying goes, sometimes "shit happens". I can rant and rage and waste time and energy on something that really couldn't give a crap about my efforts, or I can focus my limited reserves on living.

Acceptance is a dirty word for many. But I find it quite liberating. It gives me much needed balance, and I am certainly happier for it. It doesn't mean I've given up, in many ways it means the opposite. It means I have chosen to fight for me. And damn it, I'm worth it. 

I am more than my illnesses. I am more than just a perpetual fighting machine. Being happier in myself by removing that obsessive focus, means that I now deal better with my health challenges overall. 

For me acceptance takes away the power illness has over me. I accept it. I deal with it when necessary. Then, I move on. 

If you are ill, take whatever path works for you. If you're not sick please keep your opinions to yourself.

In either case, just don't mistake my acceptance for defeat. I am sicker now than I was 7 years ago, and yet I am happier. There is something in that.

Cheers

Michelle :)

I love this song by the Rolling Stones. The lyrics resonated with me long before becoming ill, but take on a whole new meaning now.

"No you can't always get what you want.
But if you try sometime, you might just find
You get what you need".

Christmas For One.

(source)

This year is going to be my first Christmas alone. Well not completely alone. It'll be me and the dogs, who are almost as demanding as people. But it's the first year that I have ever celebrated sans humans. Mr Grumpy and the boys are off to Queensland (QLD) to see my in-laws  Unfortunately, QLD and I, or more correctly, hot humid weather plus no AC and I, do not get along. Add in the travel factor and it's pretty much a non-starter for me. Surprisingly (well surprisingly to many), I am not overly concerned about being alone on Christmas, although my extended family are having minor strokes at the thought. Instead, I'm looking at it from a very positive slant. (I told my lovely phlebotomist today I was having a solo Christmas and week this year, and she was as equally excited, listing off all the fantastic benefits of being sans family, this is why I love her. Well that and the fact she can find my veins every time).

You see it's been many a year since we've been up to QLD thanks to my health issues and that's where all Mr Grumpy's family hail from. After much nagging encouraging on my behalf, he finally booked tickets for himself and the boys to head up there for the week. Here's hoping they enjoy themselves.

Why am I am glad they are going? It's simple. They need a break. A break from me and the stress of organising their lives around my health issues. They need to be free of being carers for their decrepit wife and mother. They need a chance to just relax. I want that for them. I want my youngest to swim to his hearts content. I want my eldest to have his first beer with his uncle. I want Mr Grumpy to flake out in front of the TV and watch the Boxing Day Test. I want them to go out for tea if they want, free of worrying about whether I can attend, or if I'll be able to eat anything on the menu. I want them to head out to the beach or for an ice cream. I want them to have normal for a while. I want them to be free of the stress of me, even if only for a week.

It's not to say I am a constant burden. I don't need my hand held everyday or need someone to scrub my back in the shower (although I know Mr Grumpy would be up for that one!) But I know that I, and my health, are a constant unspoken presence that plays in the back of their minds. They need a break from that, and I want it for them.

Personally, I am looking forward to be alone. I know that sounds weird. But everything I do in life, I now do accompanied. I don't go to the shops or even the post office alone. It's never just me. As someone who valued their independence, always needing a hand holder can be claustrophobic at times. It's got nothing to do with the person holding my hand. I am grateful every day that I have a family who support me as I know there are many who are doing this very much alone. But some days I could scream from frustration at not being able to do regular every day activities alone. I am a 39-year-old woman who needs someone to take her to the doctor or the hairdresser, or to simply look at clothes at a local boutique. I feel a burden. I can't relax as I feel like I am wasting their time, even though I know they don't think of it in that way. But my own guilt is a powerful force and it often gets in the way of reason.

A week by myself means that not only am I not inconveniencing anyone else, but I can do things when I want. If I want to have breakfast at midday or dinner at 10pm I can. I can watch the carols without the constant commentary and whinging from the peanut gallery. If I need to sleep I can, safe in the knowledge that I don't have to be organising meals or doing loads of washing. If I want to pot a plant, or paint a picture or watch crap TV I can without having to worry about saving up enough energy to organise family chores like food. I can eat chocolate cake for breakfast or subsist on only ham and turkey for a week and it wont bother anyone. I can swan around in my undies if it's hot or play my apparently annoying music as loud as I want. I may not leave the house for the week as I am still unable to drive more than about 5minutes, but there is a freedom involved that is hard to explain unless you are chronically ill and dependent on others.

The Christmas aspect is kind of a side issue in comparison. Though not cooking the huge Christmas meal and having to put on my happy face whilst I can feel my body dying on the inside, for the extended family, will be lovely. Having to maintain my cool to assuage the fears of others is a burden I wont miss. No doubt on the day I will miss Mr Grumpy and the boys, and I reserve the irrational right to get shitty that they are out to dinner at a restaurant, but knowing they are having a great and relaxing time away will make up for that ten fold. Plus, I can always binge on chocolate to soothe any sookiness. And the dogs aren't going to judge me as I sit as a blubbering mess surrounded by empty chocolate boxes. (Not that this is my plan. I intend to be relaxing and enjoying myself, but it's always good to have a caveat in there somewhere).

I have my food worked out. There is to be duck and turkey and ham. There is to be seafood. I am even thinking of taking the risk and making a mojito or a margarita. I have planned my GF chocolate cake/pudding substitute. Because it is all about the food. I wonder if I can teach Thor to pull a cracker?

My emergency plans are sorted, both health and bushfire.

I can't wait to hermit it for a week.

Now if I can keep my parents from freaking out and landing on my doorstep it should all be good. I have been firm, but it seems they are having trouble with understanding that I want some me time or that I am fine about being alone. Yet again it is only Mr Grumpy and the boys who get it, and get me. Maybe I can get him to sit them down and have the talk.

Here's wishing everyone a merry and joyous Christmas. May you have a symptom minimal day and have nothing but love, laughter and happiness.

Merry Christmas from the Land down Under.

(source: news.com.au)

Cheers
Michelle :)

PS I will be having a bit of a blogging/social media break for a few weeks. Time to sit back and smell the roses. Should be back mid-January.

And a little Australian Christmas Tune from the fabulous Paul Kelly.

On the bright side.

Well it's been a non-stop health blast here at Chateau Rusty, which culminated with me testing the hardness of my floorboards with the back of my head (not something I'd recommend). It must have been elegant to behold. A flailing me trying to grab the back of the couch with my Muppet arms and failing abysmally, whilst my legs slowly collapsed and the world went a tad black. Not to mention me lying legs akimbo on the floor after. At least I managed to keep all the important bits covered. That's always a bonus. Melbourne's fickle weather, migraines and a body that acts like a petulant child are not a good combination.

On the bright side I have managed to watch every episode of The Walking Dead again, (please tell me they're not going to kill off, Daryl) because there's nothing like a little zombie action to make a girl feel better. Now I just need to find a new series to tide me over for the Christmas/New Years TV break. Any recommendations are welcomed. 

On an even brighter note I am up for a few awards in the 2012 WEGOhealth Health Activists Awards. Woo Hoo! Thanks to those who took the time to nominate the blog it really means a lot and it also means that information about Dysautonomia is getting out to a wider audience. Always something to celebrate. I've been nominated in three categories this year:

Best in Show: Blog

Hilarious Health Activist Award

Best Kept Secret

If you want to show your support you can Endorse the blog in the widget in the Top Right Sidebar (next to the post title).

There is still time to nominate the many other fantastic Health Activists for various awards. Simply head over to WEGOhealth. Nominations close 31st December 2012.

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I was also honoured to be asked to contribute a piece for the new Dysautonomia SOS organisation, which launched last month. 

Psychology and Dysautonomia is a review of the quandary that is psychology and Dysautonomia and is aimed at both medical practitioners and patients. This quite a contentious issue amongst patients, many of whom (myself included) have had to deal with the spurious, "it's all in your head" line at some point, and I hope it can provide some clarity on the issue. Big thanks to Claire's big brain and wonderful editing and additions, whilst my brain and body were on vacation. Joining words and punctuation make a world of difference!

This year I was also honoured to be asked to contribute a chapter to the Second Edition of Jodi Epstein Rhum and Svetlana Blishteyn's book, POTS - Together we Stand: Riding the Waves of Dysautonomia. 

The chapter is entitled, Grief and Dysautonomia (Chapter 8) and examines the way grief presents in relation to living with a chronic illness such as Dysautonomia. Grief is something rarely discussed in relation to chronic illness but it is something we all experience to differing degrees. The new Kindle edition (with my chapter) is out now, with the new paperback out soon.

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It's actually been a bit of a fantastic year for Dysautonomia. Not only do we now have Dysautonomia SOS, but also Dysautonomia International launched this year. POTS UK are another organisation that have really gone from strength to strength this past year. We had our first official awareness month and there have been multiple fund and awareness raising events around the globe. There have also been far more articles in newspapers, with a higher degree of accuracy. The most exciting news for me is that more doctors are starting to be aware of the various diagnoses. This last six months I have encountered a number of specialists who had actually heard of POTS, NCS, OI and the like. Such a change to when I was diagnosed back in 2007. This gives me hope. We still have a long road ahead of us, but we have more forward momentum than we've had in a long time.

Congratulations and a huge pat on the back to all who are helping to raise awareness and provide support for those beginning and continuing on the Dysautonomia roller coaster. As Jodi's book says "Together we stand", or as I like to think of it "Together we kick arse!"

Cheers
Michelle :)

To sleep, perchance to dream.

Sleep and I have not been friends for quite some time now. I have forgotten what it's like to simply fall asleep, dream sweet dreams, and wake up refreshed. These days I spend my nights staring at the ceiling and contemplating smothering the happily snoring Mr Grumpy with my pillow as he flaunts his prodigious sleeping skills. (I also fantasise about shaving off one of Mr Grumpy's eyebrows, in my bouts of crazy, sleep-depraved jealousy. You know, just to mix it up a bit). Actually, that's not completely true. In reality I have a persistent, well, persistently crap, sleep cycle  It involves roughly 3 weeks of insomnia, followed by 3-4 days coma sleep, followed by yet more weeks of insomnia,..... repeat ad infinitum.

I simply can't fall asleep. And if I eventually do, I can't stay asleep. Instead, dozing and waking repeatedly, for a few hours. I have tried meditation, sleep hygiene, herbal remedies such as valerian, zizyphus, and camomile  lavender pillows, lavender on my temples, warm baths, warm milk, swearing, begging, crying. None of it seems to work. This old post is still a good reflection of my nights except for the night time pee-fest which the amazing DDAVP has mostly eliminated.

And can I just say that the coma sleep phase is no picnic either. It's not refreshing in the slightest and leaves me just as exhausted as the insomnia, with the fantastic addition of making me even less functional than usual. I'm pretty sure Mr Grumpy is reminded how lucky he was to marry me every time he sees my elegant splayed and comatose form, drooling like a champ onto various pillows. I believe that's what's known in marriage therapy as, keeping the magic alive.

My lack of brain cells and way-to-long list of medical appointments, has meant that this aspect of Bob has been left to languish. I mean how many doctors and ailments can you deal with at one time? It's all about prioritising issues and trying to overcome medical fatigue to drag your arse to yet another appointment. But apparently, it's not that good to ignore insomnia, or so the horrified look on my neurologist's face seemed to say. Rocking up to my appointment pretty incoherent after sleeping less than 2hrs a night for over a week, seemed to alarm her a tad, so she quickly typed out a referral to a local sleep specialist assuring me that he was fantastic. And to my surprise she was right.

How often can you say you see a specialist who is both knowledgeable and friendly? And not fake friendly, genuinely friendly and personable. Even chatting happily to my eldest about Schoolies. To top things off he had recently been to a presentation by my cardiologist on the various forms of Dysautonomia, diagnosis, treatments etc. Jackpot! We discussed tilt tables, clonidine research, alternative and traditional treatments, compounding pharmacies, the works. Whether or not he can help me is almost beside the point, because it is just so refreshing to have a non-stressful medical appointment.

He was thorough and listened. We have a starter plan. I am to have at-home monitoring for a week rather than stay overnight for a sleep study, where as even he acknowledged, I'll likely just stare at the ceiling the whole time and give them little to no information. To make things easier and avoid the travel issue for me, Mr Grumpy can pick up and drop off the gear and he'll even do a phone consult after.

"Whoa!", I hear you say. "A doctor who listens, is thorough, knowledgeable, knows about Dysautonomia, is friendly and wants to make it as easy as possible for me?" Sounds like an urban myth, right? Believe me I was pinching myself just to make sure it wasn't a dream. Day-dream of course, none of that real sleep/dream stuff for me. But it's all true. it was also completely covered, so no out-of-pocket  expense (though the hospital parking which cost me a kidney and the promise of my first born, made up for that). There are some good doctors around, just finding them can be damn difficult at times.

Now as to whether he can help me, I have no clue. But I will bask in the glow of a pleasant medical experience for a change. You really have to appreciate those moments when they happen. After a really dismal and infuriating Dermatology visit a few weeks ago this was just what I needed to renew my faith in the medical system.

Tomorrow Mr Grumpy picks up my snazzy new accessory which will give him a recording of my circadian rhythms, and movements for the week. And from there we will discuss my options.

So a big high five to Professor Snooze, whatever the eventual outcome. Because we need to give a shout out to the good doctors when we find them. And here's hoping that soon I may be able to write a post where all you'll see is a very contented zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz.....

Cheers
Michelle :)

PS. I've been lucky enough to be nominated for Best in Show: Blog and best Humour Blog 2012! in WEGOhealth's Health Activist Awards. 

If you want to show your support you can, by endorsing the blog. Simply add your email into the widget on the top right of the side bar (next to the title of this post).

This one's for Mr Grumpy. After talking about smothering him in his sleep I kinda owe him. Having said that I do know all the lyrics to this one thanks to it's prevalence in our dating days. Not quite as chipper as my other choice Mr Sandman.

Recap: 30 days of blogging for #NHBPM.

Well it's finally Day 30 of WEGOhealth's NHBPM. I've missed 8 days, but managed 22 which is way more than I thought I would. There was need for much in the way of Eye of the Tiger throughout the month. Writing everyday is exhausting, mentally and physically. And to be honest my health is not exactly conducive to taking on such a large challenge and definitely didn't play ball throughout this past month. But I am glad I took it on. Too often I shy away from a challenge for fear I'll fail, but I know I need to push myself more. I need to step outside my comfort zone and doing something like the 30 Blogs in 30 Days is a good kick in the pants.

It's good to have goals but also important to be kind to yourself so I decided not to beat myself up for not making the full 30. At least I gave it my best shot.

I've found some other great bloggers from around the world. And enjoyed feeling the sense of community that it generates. It really showed the commonalities of the chronic illness experience and that geography really makes no difference to the basic ways it impacts upon our lives. I think my Day 11 post Strength summed it up for me. I know in my own Dysautonomia community we are a strong bunch, but this month has shown me that it is a trait that really permeates all types of illnesses. We all have our ups and downs but we keep on taking that next step. There are some truly amazing people out there doing truly amazing things everyday.

As I wrote in Strength:

"The shared voice of this event has been raw and honest. Every person who has shared a little of their world has claimed their voice and all those collective voices roar. "

Keep on roaring, guys.

Cheers
Michelle :)

Day I: Why do I write about my health.
Day 2: Find a quote and use it as inspiration.
Day 3: I don't know about this, but I'd like to.
Day 4: A chronic handbag.
Day 5: Health Activist Soapbox. 
Day 6: And I've done my back, because it's not like I had anything else going on.
Day 7: Setbacks. Vlog time.
Day 8: A letter to my health.
Day 9: No Blogging Day.
Day 10: Taking a little Time.
Day 11: Strength.
Day 12: Chronically Blogging Australia.
Day 13: Taboo.
Day 14: Favourite Blogs.
Day 15: No Blogging Day.
Day 16: How to be Alone.
Day 17: No Blogging Day.
Day 18: No Blogging Day.
Day 19: Advice for new Doctors and Nurses.
Day 20: No Blogging Day.
Day 21: Thankful despite the murk.
Day 22: Changes.
Day 23: Christmas suggestions for your favourite Dysautonomia patient.
Day 24: Rescue Pet Therapy: The rescuing goes both ways.
Day 25: "I told you I was ill". What happens to your blog/community when you die?
Day 26: No Blogging Day.
Day 27: No Blogging Day.
Day 28: No Blogging Day.
Day 29: Unexpected Blessings.
Day 30: Recap.

A little something for everyone who took part in this event, either writing or reading.