Tuesday 18 December 2012

Christmas For One.

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)
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.

Sunday 16 December 2012

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.


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.


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!"

Michelle :)

Tuesday 11 December 2012

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.....

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.

Friday 30 November 2012

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.

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. 

Thursday 29 November 2012

Unexpected Blessings: Day 29 #NHBPM

I'm going to try and be brief for once and pick my top 3 unexpected blessings of being ill.

1. Appreciate the small things.

Without a doubt this is an unexpected blessing of being chronically ill. I used to think I did appreciate the small things before I became ill, but it is only now that I realise I truly do. There is much that is lost when you become ill that it can take a while to not only appreciate the small things, but actually see them in the first place.

These days I see beauty all around me and take joy in life where ever I can find it. I started doing The View From My Couch  series to both force myself to change my view, and to share that joy with others. As I said in the first of these:

"Every day we overlook the beauty that surrounds us.  We seek outside ourselves and our regular environment to find beauty and excitement.  We miss the small stuff.  The little moments that are all the more precious for their simplicity.  There is beauty all around us, if we take the time to notice.  If we take the time to refocus our vision until it naturally seeks out that beauty".

For me I rarely leave the house and am often stuck inside. And yet I find beauty and joy all around me. Be it a warm toasted fruit bun, a little bunch of flowers from my yard, being able to pot up a plant, the smell of daphne near our driveway or sitting quietly with my dogs in the garden, they all bring me joy. Some days simply being able to wash my hair without needing to lie on the bathroom tiles afterward, or managing to do 5mins on my minicycle are wondrous miracles I can fully appreciate.

2. Sorting the wheat from the chaff.

One thing that was hard early on was the reactions of my family and friends. Initially people were concerned but that quickly dissipated as time went on. People who I thought would stand by me simply drifted away and some who I didn't expect to care stepped up in their place. These days my circle of friends and even family are far smaller, but the quality is much higher.

Being chronically ill forces you to re-evaluate the relationships in your life. When I think about the time I would have wasted on those fair-weather friends/family, who if truth be told were never really friends, I am glad that this illness pushed me to see them for who they truly are.  I've written about this a fair bit on the blog.

"Bob has sent many of my "friends" running to the hills. Can't blame them I guess. Bob is a bit of a prick after all, but hey they get him for an hour or two I get him for life, suck it up you spineless gits! (Sorry still a little raw about a few people). I guess some people just have the constitution and moral fortitude of a wet tissue. I could bitch about the fair weather friends in my life (or no longer in my life as the case may be), but I don't want to give them any more of my time than they have given me. I will however, send one last big raspberry out into the cosmos to make contact with those fleet of foot "friends". Feel that raspberry, FEEL IT!!!!! .......................................... Ahhhhhhh, deep breath. That feels better". (Free the Twins, 2009)

I try and surround myself with positive and supportive people these days. I have little in the way of energy reserves and I'm not going to waste them on others who either give me nothing in return or drain me to the core. Pre-sick I didn't really notice the takers in my life. These days they are long gone and I can definitely feel the lack of their presence in my life. It feels pretty darn good.

It has also meant that I have met lots of great people who I would never have met should I have never become ill. I have found some truly good people both in real life and on the net, both of whom I think of as my dear friends. People who get me and what I'm living with and I don't have to hide who I am. People who I support and who support me in turn. True friends across the globe who have special places in my heart. And when you find those people you realise just how crappy and false a lot of those other people were.

3. Freedom.

(Why yes I am wearing a Batman (or Batmum) costume in bed)

Being ill has given me unexpected freedom to be true to me. It took me a long while to realise this one, but I've noticed over the last few years I have put more value on what I want and don't really give a crap what anyone else thinks. I often wonder if I would have done my zombie photo shoot before I became ill. I've always been a little left of centre but haven't always shared that with others. Since I became ill that has changed.

"For me being chronically ill has in a sense made me feel freer. Sounds crazy I know, but it's true. My life is not what it once was. In fact it's been turned upside down, inside out and I'm still not quite sure where, or if, it has landed. But what that means is, all bets are off.

My body is on the decline. Something that has become far more apparent over the last year. As I mentioned in this post, that realisation gives a certain level of release. Instead of thinking of all the reasons not to do something, I give myself permission to say "Go for it". In many cases it's small things like sitting on my couch wearing my Dorothy shoes because they make me happy. Or wearing my bright purple compression stockings with shorts and sparkly silver flats to the doctors. Or even wearing a pink feather boa in my profile picture. I really don't care whether people think I am a complete nutter, because at this point in the game, doing things that make me happy is far more important than worrying about what others will think" (The Zombiefication of a Rusty Hoe, 2012). 

It's strange to think of the unexpected blessings that have come with illness. I've lost a lot over the last 6yrs and no doubt there'll be other losses along the way. But I made a choice a long time ago to find the joy in life. It's not always easy and there are times where it all gets too much and I feel overwhelmed by the sheer burden of my ill health and the uncertainty it brings. But even stuck in hospital in pain or scared, I put on my Wonder Woman t-shirt and my sparkly red slippers, and listen to AC/DC (Jailbreak is a personal favourite when stuck in hospital). Because that's just the way I roll, baby. And because life is too short to not pause, take that deep breath, and re-evaluate the way you look at the world around you. Blessings are all around, just sometimes you have to be a little creative and challenge your preconceptions.

Michelle :)

I love Nina Simone and her version of Feeling Good is my favourite by far.

Sunday 25 November 2012

"I told you I was ill". What happens to your blog/community when you die? Day 25 #NHBPM

I had never truly thought about what would happen to my blog, or online life, should I die, until Australian author Sara Douglass died and her blog just disappeared from the web. I'd always enjoyed her books, and read her blog. Sara wrote a really powerful piece on death and dying on her blog. It was one of those pieces that resonates with all who read it and you simply never forget. It examined how society responds to the dying and to those with chronic illness. I never thought that piece would disappear but it did. In fact her entire blog just went and for me it is a great loss. (extracts can be found on this touching piece by Kim Foale, from Frogpondsrock).

This past year death took a dear friend in the Dysautonomia community very unexpectedly, and many other lives have been lost through complications or underlying disorders. All a shock in a disorder that our doctors continually assure us "wont kill you". The loss of Sara Douglass's blog and the now unavoidable reality of the potential mortality of my disorder has made me think more about what I would want to happen to this blog and it's Facebook page.

Should I write them into my will? Who would they naturally go to? Would they even want to take responsibility for either my blog or page? Should it stay up or go offline? So many questions that I really don't have good answers for.

My blog is my baby. It is a written record of my journey over the last few years. It is deeply personal and in a weird way it is me, or at least an extension of me. Thinking about what would happen to it after I'm gone is a little like deciding what I want to happen to my body after death. (For the record I am an organ donor and they can take anything they want, with the exception of my eyes. I just can't come at my eyes being removed. But the rest is up for grabs. What ever's left over can be fried up and my dust sprinkled somewhere. See, this I have thought of.)

Being a personal blog rather than a business makes it harder in some ways. Essentially I am leaving a piece of myself behind and I would like to have a say in what happens. But it's more than that. I know my blog has been a lifeline for many patients and their families. If it were to simply disappear from the web the support it has provided and will potentially continue to provide, would disappear with it.

I look at what I have written and wonder, will it become dated and therefore less useful to others? In many ways it is the content itself that makes that decision for me. From the beginning I made a conscious decision to not offer medical advice or advocate for a particular treatment. I don't talk about medical advances or treatments, except in how they directly effect me. Instead, what I write about is the experience of chronic illness. What it feels like to live with illness day in and day out. There are facts and clinical issues hidden in there but the emotional, social and psychological aspects of illness predominate. In that respect I think that it is possible for my blog to continue to be of use to others long after I'm dead. Whilst the way Dysautonomia is diagnosed and treated will change over time, the emotional response to illness is one which will always remain. The need to express that emotional response with honesty and without shame or embarrassment and thus normalise experiences will also remain. For that reason I would like this blog to remain online after I pass.

As to who would take responsibility, that is harder. My family know me best and I would like it to stay with them. But as to whether they would want to take that on, I don't know. It's not a conversation we have had, but one we will have to have.

I have an online life. Not just this blog, but it's Facebook page, my Twitter account and a number of Dysautonomia and Chronic Illness support groups I am involved with, not to mention my poorly neglected food blog, Google plus, YouTube etc.

Do I keep up my personal Facebook account or shut it down? Many say they like to keep it these up as a place for people to grieve and remember. So much to consider as life on the web effects not only me but others. Personally, if I fall off the perch I don't want grief, I want a life celebrated. I want those who care for me to sing over the top 70s and 80s songs and wear red high heels and dance. I want glitter and feather boas not doom and gloom. Life's to short to be sad.

In a sense that is what I want to direct my posthumous online life. If my blog or all the rest makes people happy. If it brings light and laughter into the world. If it can offer comfort and relief, then keep it going. That is the kind of legacy I'd want to leave. If not, then I hope my family would take the necessary steps to remove my online footprint.

For more information on things to consider regarding what will happen to your online life after death check out this and this.

Michelle :)

* "I told you I was ill" was what comedian Spike Milligan famously said he wanted on his tombstone.

This better be played at my funeral. I want people to dance. Margaritas with little umbrellas, all round.

Saturday 24 November 2012

Rescue Pet Therapy. The rescuing goes both ways: Day 24 #NHBPM

This is Thor.

My beautiful, big, slightly out there, Great Dane.

This is Thor the first day we saw him at his rescue mum's house.

He was dramatically underweight had scars all over his little belly, his tail didn't work, his back legs had no feeling and he was completely withdrawn. He was the saddest dog I have ever seen. The black cocker-spaniel pups behind him were the same age and full of puppy enthusiasm, whilst he just sat there or wandered aimlessly. I'd never seen a pup that didn't know how to play before. It broke my heart and needless to say, there was no way we were going home without him. Just looking at this photo and remembering how sad he was back then still makes me tear up.

We are his fourth home, which is sad to consider given he wasn't even 5mths old when he came to us. I have spoken about how he and his sister Freyja, came to our home before so I wont rehash it all. But I do want to share how a dog that no one wanted and was so cruelly treated, has come to mean so much to us.

I often say that although we rescued him, he rescued me in turn. When he came into our life my world had been turned upside down by illness. I was getting sicker everyday, had given up work and was feeling very hopeless and helpless and then this broken pup came to us and everything changed for the better.

I found Thor's description on Pet Rescue and just knew he was the one. There was no photo just his story, but that was enough. I phoned his rescue mum and we chatted for about 30mins and arranged to come and meet him. After meeting him and deciding he was meant to come home with us, his rescue mum and her partner drove the hour and half from Mornington to our house to make sure he was going to a good home. Thankfully, they were happy with us and our yard and what we could offer him and Thor became the newest member of our family.

I wont say it's always easy or not frustrating. He continues to have problems from his early life. When I took him to our vet for his first check up, he said it was highly likely he had brain damage. He's not always with us, and does some strange lip smacking and air licking periodically. He also licks himself compulsively. Now he has progressive spinal problems (coincidentally at the point where his original injuries were) which mean his back legs no longer work well and he falls a lot. But the love he brings makes up for the drama.

He is a beautiful dog who only wants to be close. He has been (with Freyja) to my old physio class for pet therapy. And was gentle and loving. It's strange how he seemed to know we were all a bit fragile.

He's a little left of centre. This photo is from when he was still a pup. He continued trying to do this as an adult. His sister also followed suit. We no longer have a BBQ.

He can sleep anywhere. We like to think it means he finally feels secure.

He still thinks he is a lap dog. (Poor Grandma)

He puts up with his sister Freyja sitting on him.

And when I dress him up.

He and his sister know when I'm ill.
They sit by my bed and watch me.
If I pass out I am woken with barks and a slobber covered face.
They sit outside the shower to make sure I am okay.
And are my shadow on the bad days.
They will be my cane and walk slowly by my side as I balance on them.
And spend many hours on the floor beside my bed.

All this from the dog no one else wanted.

Rescuing a pet is one of the most rewarding things you can do. You just need patience and open heart. In return, you are rewarded with unconditional love and support. Don't be afraid to get a big dog (and Thor is big, he's nearly 100 kgs of dog now) or an older dog. Or even a dog who's start to life wasn't that great. They want to love and be loved. They want a family and forever home. They will bring you joy and laughter. They are a form of therapy for the soul.

I can't fully express the happiness Thor has brought us. If you follow me on Facebook you'll know he and his sister Freyja, are central parts of my life. And there is nothing more comforting than smelly, slobbery dog love when you're feeling down. If you are home alone (like me) they are the best companions. They keep me busy, drive me insane, and make me forget about being ill. Research has also shown that pet ownership has many positive health benefits. Woo Hoo!

You don't have to go big (although I have a soft spot for the giant breeds) there are dogs of every size, age and temperament waiting for their forever homes. Or there are cats to snuggle with. Or rabbits, or rats, or pretty much any animal you can imagine.

Rescue organisations can also match the dog, or cat, to your lifestyle, other pets etc. They check them for temperament and give them a vet check. You can often find out far more about a potential rescue pet and whether they are the right match for you, because they have been so thoroughly checked out.

If you're thinking of getting a furry companion, check out your local pet rescue centres.

Or you could consider fostering pets waiting for their forever homes.

Or support rescue organisations by volunteering or donating.

Check out: 
Pet Rescue : has listings for a wide range of different rescue groups.
RSPCA: has listings all over the country.
Or if you are after a particular breed, most associations also do rescues for their breeds. Simply contact your local organisation.

NB: This weekend the RSPCA (Australia) is waving their adoption fee on adult cats until the 25th of Novemeber 2012.

Michelle :)

Friday 23 November 2012

Christmas suggestions for your favourite Dysautonomia patient

I have heard of these strange people who are actually organised with their Christmas shopping. People who start planning for the next Christmas on the 26th December, and start purchasing gifts for their loved ones shortly after. Freaks.

I am not one of these people.

I am the person who even pre-sick was running around like a chook with their head cut off in the last couple of days before the 25th, freaking out that they haven't managed to buy all the necessary gifts. Since becoming sick much of this shopping has been delegated to a poor Mr Grumpy, who loooooves shopping (insert large amounts of sarcasm right here).

However, this past year I discovered the joy of Internet shopping. I know, I've got my finger on the pulse, right? Just call me hipster of the morning, up to date with all the latest newfangled things. So this year I thought I'd put together a list of my favourite Internet shopping spots and gift ideas.

Being chronically ill and often stuck going stir crazy inside my four walls, my shopping needs differ a little to that of regular folk. For me it's all about the pampering and beautifying of my small pocket of the world. 

I should add I am in no way associated with these brands. They are simply the ones I've had personal experience with and/or have on my own wishlist. 

PJ Alternatives:

I spend a ridiculous amount of time in pjs these days. When you are chronically ill you want to be comfortable and old battered flannelette pjs fit the bill perfectly. However, these can leave you in a bit of a funk. Prior to going into hospital in August I surveyed my collection of threadbare, yet comfortable, pjs and realised I really didn't want to be wearing them in public. So started my search for some cute pjs or pj alternatives. Luckily my search coincided with a tweet from the fabulous Claire Bowditch about Lazybonesbe still my vintage loving heart.

Lazybones have some beautiful vintage inspired clothing and housewares. I have my eye on a number of their dresses not that I go many places anymore. I ended up buying quite a few pieces to take to hospital. Not pjs, but definitely comfortable and pretty alternatives (check out the Relax range). Mind you I also took in my red, and sparkly silver ballet flats to wear. Who says you can't look good in hospital? Now home, I wear them all the time (I'm actually wearing a pair of their pants and a cardi as I type). Comfort should never be underestimated and if you can match that with fashion, why not.

I am aware that many of us living with chronic illness are living on super tight budgets, being sick is an expensive business. But Lazybones do have quite a fabulous sale section where you can pick up many great pieces for a bargain. A quick review of the current sales and there are a lot of light, pretty and comfortable options for great prices. 

(I'm a complete sucker for any company that goes the extra mile. My order, complete with "brown paper packages tied up with strings....", well played Lazybones.)

I also have a thing for funky t-shirts and Threadless fit the bill. Again with a budget in mind they often have a $9.99 clearance range on offer. The designs cover a wide range of popular culture and geeky themes so fits me perfectly. I have quite a few of their t-shirts now and wear them on a regular basis. I will say it does take a while for them to make their way to Oz so if you want them for Christmas, order now. 
(Green Recycle t-shirt)


Just as we spend much time in pjs, those of us with chronic illness spend a lot of time in bed. Some beautiful bed linen can make it seem like less of a burden to be stuck in bed. Currently my bedroom is about as inspiring as old cardboard. The previous owners were either in love with 80's salmon/apricot vomit inducing paint/curtains/carpet/fixtures or got a great deal on an end of stock clearance sale. It's like we are living inside a house made entirely of salmon mousse. 

Recently I discovered the beautiful work of Peacocks and Paisleys. I love vibrant colours and patterns and have always loved the aesthetic of Indian fabrics. Her collection is stunning and made using hand block printed textiles from India. I am in love her Modern Bohemian collection, so pretty and vibrant. So now I am saving my pennies to purchase one of her lovely quilt covers, and maybe some curtains. If I can't get out to my garden on a regular basis, then I'm going to bring the garden inside. Okay so this isn't really a bargain option. But it is the kind of purchase that will last you a long time and I am willing to do my own version of layby (ie put any left over cash into my money jar until it starts to add up) to save up and buy such a lovely piece. 

Body creams:

As regular readers know I am a huge fan of MOR Cosmetics. My sister first introduced me to MOR a couple of years ago via a care package she sent when I was going through a rather rough phase. Since then I have been a complete convert to the Marshmallow range, be it the body cream or the lip silk. I'm of the mind set if you find something you love why change. Recently, I purchased the perfume oil. This purchase coincided with a really rough health phase for me where I was stuck in bed for a number of days. Lifting my head was hard, let alone trying to rub in body cream (my usual pampering/feel better routine). But with the perfume oil I could do a quick dab and voila!, the beautiful Marshmallow fragrance with little to no effort. It's amazing how smells can make you feel better.

I love that they are a local Melbourne company, that they pay attention not only to the product but the packaging (too nice to throw away), have great customer service, and they were kind enough to support my last giveaway. Additionally, for the budget conscious they frequently have great deals for members. They also add little samples to your order. These are perfect to take along for hospital stays. And lets face it, you need a little pampering when you're in hospital.
(See I'm not joking when I say I love their products)


My fondness for Lindt Excellence with A Touch of Sea Salt is well known. I still see this as the perfect Dysautonomia  present. It has dark chocolate which contains potassium, and salt, for which we are one of the few disorders where your cardiologist will strongly recommend increasing your intake. In my mind this is therefore a purely medicinal product. And a block is definitely budget friendly. 

I always have a stash in the fridge and the boys know to keep their hands off. I also cook with A Touch of Sea Salt, making everything from brownies to toasted sandwiches (if you haven't tried a toasted chocolate sandwich you haven't lived) or a fabulous hot chocolate with a pinch of cayenne. Lindt Australia were also kind enough to support my last give away, so they do have a special place in my heart. A while back Mr Grumpy visited one of their many stores and brought me home some delicious Excellence 70% chocolate macarons/delice. They were fabulous (hint hint Mr Grumpy). I did see on their site they have a salted caramel version, again surely this is a perfect gift for the Dysautonomia patient! 

Water Bottle:

If you have Dysautonomia you need a reusable water bottle, so why not make it pretty. There are multiple brands that offer cute reusable water bottles these days. You can pretty much find something for everyone. I stumbled across the Thermos water bottles by chance a few years ago. I always think of Thermos as being for hot drinks or soups, so was surprised to find they do one for cold drinks. I love mine. It keeps the water icy cold (great coming into Summer) and is pretty much indestructible. Mine has be thrown around, dropped, kicked, you name it, and still works and looks a treat. 
(This is the one I have but they have many different styles. I also quite like this one and this one)

These products pretty much fit my daily life, pj alternatives, lovely bedding, body creams, chocolate and water. I don't have much in the way of energy and I am at home 95% of the time. Sometimes it's just about making that time as pleasant as possible. 

Happy shopping.

Michelle :)

Thursday 22 November 2012

Changes: Day 22 #NHBPM

I picked the topic of Change for today as I inadvertently did a Thankful post yesterday. Good old brain fog didn't think to check the future topics.

This really is a quick post as I am sharing a video called Changes from The Dysautonomia Information Network or DINET, as it's commonly known. This video was produced a few years ago now and concentrates primarily on Postural Orthostatic Tachycardia Syndrome (POTS) but much of the information is appropriate for most forms of Dysautonomia.

It features my dear friend Autumn and the lovely Shannon, both of whom I've known for a number of years now. In a way it makes it a more personal video for me knowing both of them and how strong they are despite their varied illness paths. Also stars a rare doctor who both has POTS and treats the disorder, which provides a nice unique perspective on the disorder.

You're both Rockstars Autumn and Shannon!

Michelle :)

Because every post should have a musical interlude I give you a video I created about my own experience with Dysautonomia back in 2010. It's accompanied by Today I'm a Daisy by the fabulous Australian artist Deborah Conway.

Wednesday 21 November 2012

Thankful despite the murk: Day 21 #NHBPM

The last few weeks have been tough. Hell, the last few days have been really tough. Having a body that's always on the knife edge means that the slightest thing can knock me over. My system is not good when that surprise element comes along. This time in the form of anther popped lower back disc. Despite the worst of the pain being over and being able to start my paltry back exercises once more to climb my way back to my previous level of dodgy, my ANS is not having any of it. Instead it's taken the route of petulant teenager and is refusing to play ball.

I feel like I am walking and thinking through a dense fog. My body is completely uncooperative and has taken to packing it in even when I am simply sitting. I am exhausted mentally and physically and really, if I'm honest, I feel a bit overwhelmed at the moment. I knew it yesterday when I cried reading a chapter of Tim Costello's, Hope. That's just not me. I don't do that. But it gets like this at times. When my body is unrelenting in it's assault. I envy those people who can maintain their brain (and their calm) no matter what their body throws at them, but I'm not one of those lucky ones. I know all the reasons why. I can diagnose my cognitive difficulties and even tell you what neuropsychological tests I'd fail right now. But that doesn't make it any easier. Despite knowing it's a combination of fatigue, general ill health and the simple fact that I am not getting anywhere near enough blood to my brain, it makes me angry. I'm snappy and snarky with a good dose of vague thrown into the mix. I'm sure I'm an absolute delight to live with at present.

The last few days, vomiting for no apparent reason has re-entered the mix and my stomach is still churning and expelling Southwards despite pretty much mainlining Imodium. I feel like someone should be yelling "Thar she blows", to warn the unsuspecting in my vicinity. The unrelenting shitfight (all puns intended) is just plain hard to deal with at times. As my friend Sam and I were lamenting yesterday, we just need a day off, a designated sick day from being sick.

So of course in the midst of all this my son's Year 12 valedictory dinner was on last night. Even better Mr Grumpy was away for work so my main safety net was absent. It's times like this I realise how much I rely on him now. His very presence is comforting. I know no matter what happens he can handle it. I know he worries but he doesn't fall apart with the worry. He's a practical guy and just gets on with what needs to be done. And we have our own sick short hand. If I get a certain look, he knows what it means. If I say we need to go now, he knows it means immediately, no fluffing around. If I say I need a loo he  zooms to the nearest servo or maccas no questions asked. He knows when to ask if I'm okay and when it's just my normal. That knowledge removes more stress from my shoulders than I ever really appreciate until times like this. Without him I have to admit my anxiety began to kick in. It's hard to admit that when I used to be so independent. I think I delude myself that I still am Miss Independent, denial is a wonderful magical thing. But times like this reality jumps up and bites me.

But it's not just his absence that brings on the stress. It's also the fact that the responsibility then falls to my children. A burden they shouldn't have to shoulder. Because I can't just go along as Mum, I am also the person who needs someone to help me up or keep watch or all the other things that have to occur when you have a chronic illness that is unpredictable and of late, more temperamental. They have to tailor their needs and wants around my crappy health and I hate that. My youngest is like a mother hen patting my hand and asking me if I need a drink. My eldest is stoic and practical, driving me up to the front door so I don't have to walk miles from the car park and telling me it doesn't matter that we have to leave early because I'm going downhill fast. They are good kids. I just wish things could be different for them.

This time yesterday I was getting ready, pausing only to throw up repeatedly. I'd tried sleeping, more salt, more water, more meds all with no success. But I pushed through and we got there. I could barely eat and spent 1/2 the time in the loo, but at least I was there. We even managed a family photo. But I can't say it wasn't stressful or that today I have been able to function. I am glad I managed to get there and stay for as long as I did. I know people talk of mind over matter and that's true in a sense. I pushed myself because I wanted to be there for my son. I don't regret the effort for a minute. But it was hard. Hard in ways that unless you've been there it's impossible to truly appreciate.

Half way through the presentations I could feel the downward slide. Anyone with Dysautonomia will know what I'm talking about. That moment when there's a perceivable change in your body and you know it's going to get messy. Sitting up so long in a noisy banquet room is exhausting. It goes against all your body's natural preferences. Being upright so long is counter-intuitive to a body that has trouble getting the blood adequately up to your brain on your best day. There is a running joke that we are allergic to gravity but in a sense it is true. Our bodies can't cope with with being upright. Standing is anathema and sitting nearly as bad for me at the moment. Trying to sit and talk and remain coherent is damn near impossible.

Since becoming ill I've had a slowly declining tolerance for stimulation, be it noise, flashing lights, or just the natural hectic nature of a room filled with a couple of hundred people. It's overwhelming for the senses and simply exhausting, never a good combination and leads to an escalation in symptoms 99% of the time. I remember when I was working in Traumatic Brain Injury (TBI) and we would limit the number of visitors a patient could have or how communication would take place so as to not overwhelm them. I feel like now I need to set similar limits for myself. I simply can't screen out all the background noise and movement to focus on a conversation or even pour myself a drink. It's just too much.

About half way through the presentations I was looking at the world through my own personal sparkly lights and slowly rising head pressure. I could feel the muscles in my face starting to lose coordination, that great time where you sit there going in and out, trying to work the muscles and knowing that you are losing feeling, along with the battle. I know I looked bad because the usual round of "Are you alright?" started. I know we bang on about having an invisible illness, but at times like that it's hard to hide what happens. It becomes all too visible.

We left early. After the last presentation. I feel bad that we couldn't stay longer, though I know both of my boys understand. And woke this afternoon, to find I was still wearing one earring and still had my make up on. I'm exhausted beyond words. But...

...I am thankful for many things. Thankful that I made it to my son's dinner last night. That he and his brother looked after me with no fuss. That I didn't face plant on the table despite thinking I would at any minute. That our friends at the table treated me like a normal person rather than quizzing me about my health. That even today I have the luxury of recovering in bed and not moving because my eldest is picking up his brother from school. And that the ladies of the Oz/NZ Dysautonomia group willed me their luck and strength to make it through last night.

As my wise friend Claire said,

" It may not sound like much to a lot of people but that sure is a lot of great things to thankful for".

Michelle :)

This hasn't really got much to do with this post other than I have been listening to a lot of Angus & Julia Stone of late and I love this song.