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.

Monday 19 November 2012

Advice for new doctors and nurses: Day 19 #NHBPM

When I sit down to think of the advice I'd give new doctors or nurses it comes down to one word, rapport. Take the time to build rapport with your patients and you will alleviate a large percentage of the potential problems that can arise for both parties.

It's a simple concept really but one that is often overlooked or relegated to an after thought in practice. It is often seen as a luxury that time-poor practitioners simply cannot afford. But in reality it can be established quickly and can make your professional life much easier, and more satisfactory, in the long run.

As a practitioner it was the cornerstone of my practice. Whether in an acute or sub-acute or rehab setting, rapport building was the first part of any assessment process. It was also integral to encouraging patients to participate in treatment or management. But it is now as a patient myself, that I can truly appreciate just how important the development of rapport can be. It influences my health care choices in ways I truly didn't understand and impacts upon both who I seek out for treatment and who's information I trust.

I actively seek out doctors and nurses who can genuinely listen and seem interested. Those that can understand that whilst I come to them for a particular problem, that problem does not live in a vacuum. A moments kindness or compassion can go a long way. In turn, if I find a doctor or nurse who is unwilling to treat me as a person, is intent only in seeing my illness or injury, is rude or cold, I go elsewhere. If a medical practitioner is unwilling to listen to what I am saying how am I to trust that he or she fully comprehends the issue at hand or the treatment they have prescribed.

Remember there is a person behind the illness or injury.

Rapport is a skill that requires practice like any other. Some are natural rapport builders and some need to apply themselves diligently to master the skill. But either way, it is a skill set that is vital to good practice.

A quick look on any patient forum or support group, and it is apparent that much of the dissatisfaction with the medical system reported is linked to how particular medical staff made them feel. A doctor who tells a patient they cannot help them or doesn't know what is causing their symptoms, yet makes them feel heard and understood, is much preferred to an expert with little to no bedside manner. Illness is scary and confronting. The system is such that as a patient you are often left feeling disempowered and isolated. You want to know that your doctor or nurse has your best interests at heart and that they are invested in your care. If that feeling isn't present a patient is far less likely to trust advice given or follow treatment plans.

Patients remember a doctor or nurse who made them feel human. Sadly, because that experience can often be the exception rather than the rule. They remember the doctor who listened to them and took that extra five minutes to make them feel like they matter. Conversely, patients will remember, and tell others, about the doctor or nurse who made them feel nothing more than a diagnosis or a body part. That negative experience will then colour future interactions in the medical system. Clinical skills are vitally important but rapport is often what will seal the deal for patients.

Patients share information. 
Often they will seek out recommendations from fellow patients 
for doctors and nurses who are known to have a good bedside manner
 on top of good clinical skills.
Whilst those who develop a reputation for dismissive or condescending interactions are avoided, particularly in small patient communities. 

In an age where doctors and nurses are time poor it can be thought that there simply isn't time for rapport building. But the reality is that it can happen incidentally during an assessment, whilst you are taking obs or just in a the general appointment. It's not complex. It can be as simple as small talk about a current sporting event or asking about a patient's family. It can be asking a patient if they have any specific questions that they want to ask, or how they feel about a potential treatment or prognosis. It could be taking into account they have small children when you are suggesting a hospital stay or the cost of medications you prescribe. Even a frank discussion about possible medication side effects can help with compliance. As a nurse or doctor you don't have to necessarily 'fix' these issues. But acknowledging they exist will go a long way in making a patient feel heard and understood.

Patients are no longer content to sit back and passively receive information and direction from their physicians. They want a partnership. And if you can create that experience for a patient, compliance and better treatment outcomes occur. It means your patients are more likely to give you the information you require for accurate diagnosis or treatment. It can also alleviate potential medical mistakes and injuries eg the growth of alternative medical practices means patients can be on multiple alternate therapies whose effects are often unknown or can interact with traditional medications. If these remain an unknown for fear of dismissal or ridicule by the treating health professional they can have potentially serious consequences.

Patients need to feel like they matter and that their doctor or nurse truly cares. Illness can be scary and confronting. You are often seeing a person at the worst time in their life. Your patient doesn't care that you have to see 20 other patients that day. In that one moment they want to know that you have their best interests at heart. That at some level you understand what they are going through. And that their well being is important to you.

The majority of patients don't understand medical jargon. Being able to communicate complex medical procedures or illness processes in a simple relatable and conversational manner is a skill unto itself. Taking the time to make sure that your patient understands what you are trying to convey is essential. Often patients don't fully understand or misunderstand what they are told but are afraid to ask. Established rapport means they are more likely to ask for clarification.

Conversely, many patients have difficulty articulating their medical issues. If they feel rushed or that pressured vital information may be missed. They may need time or prompts to help them clarify the issue at hand. Or simple trust to be able to share what they are experiencing. For example, I had a patient referred who was notoriously late to inpatient appointments and was deemed avoidant and uncooperative. Initially, her response was always that she was absent minded and would simply lose track of the time. It was only when she finally felt comfortable to reveal that she could no longer read clock faces (something that she found very confronting) that it was found she had visuospatial difficulties relating to a previously unknown infarct. A digital clock resolved her time management issues and she was referred on for stroke review and follow up. Without developing trust this issue may have remained undiscovered and future stroke risk factors not addressed. Others may be embarrassed to discuss certain issues particularly in regard to sexual, toileting or gynaecological difficulties instead talking around the issue or avoiding it altogether. If rapport is established the likelihood such issues will be reported, and therefore treated appropriately, are greatly increased.

Rethink how you communicate with your patient. Not just in what you say, but how you say it. Are you talking to, or with your patient? Think about your body language. Think about whether you are actually listening to what your patient is saying or have you already made your mind up. Use the conversation as part of the hypothesis testing process. Know without a shadow of doubt that a patient can tell within the first 5 minutes whether you care or are truly interested in what they are saying, and they will act accordingly.
Those initial days finding your footing can be difficult. It is both exciting and daunting to finally work in your chosen profession. You are armed with a wide clinical knowledge base and you are keen to apply it. But the clinical presentations, treatments and outcomes you've learnt about are only part of the package. The first few years are a huge learning curve. The greatest part of which comes from patients themselves. The reality of illness is very different to the clinical facts that are taught in uni, and will be different for each patient you encounter. But each encounter is a fantastic chance to learn and expand your knowledge.

There will be patients (and family members) who are still uncooperative and fractious no matter how good your rapport building skills. It's the nature of the job. But don't judge all patients by those few. The majority of patients are looking to you to help them. They want to feel better. They want to trust you and they are willing to work with you to get well. They are looking for a partner to help them navigate the often difficult and scary path of illness. Let them know you care and that you genuinely understand and it can be a truly rewarding partnership.

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

Friday 16 November 2012

How to be alone: Day 16 #NHBPM

"What about day 15?" I hear you say. Well Day 15 went past in a blur of "OMG I really don't feel right!" complete with numb face and rapidly greying vision* followed by waking up on the couch 3hrs later with a drool covered pillow stuck to my face. Sexy, no? Needless to say blogging went out the window in favour of wallowing in self-pity and being rockingly incoherent.

But I'm back baby. Tapping away for Day 16 like yesterday never happened.

Today's topic is easy.

Use a picture or video to inspire a post.

I have loved this video by filmaker, Andrea Dorfman, and poet/singer/songwriter, Tanya Davis, since I first saw it a few years ago.

 I have always been comfortable with my own company. In fact, I find I relax much better when by myself than with others. I like the time to clear my head and just be. I've been that way ever since I was a child. I was just as content, if not more, to sit by myself watching the Saturday afternoon classic movies on TV or immersing myself in a book, than out with others. I've always felt a little on the outer when I'm with other people. As if I somehow missed the secret code of fitting in, that innate shorthand of being in a group, which everyone else seemed to have mastered.

Overtime I grew to enjoy being by myself. Even pre-sick I would happily go to a movie by myself or drive into the city and go to the galleries or wander around the city laneways (Melbourne city laneways are amazing and well worth a look if you ever get the chance) for hours. I like losing myself in places and have always lived more in my head than in the real world. There is an ease, or maybe comfort, in my own company. Alone I can truly appreciate the world around me and/or immerse myself completely in an activity. And now when often there is no choice but to be by myself, I truly appreciate that comfort.

But I know for a lot of people being alone is hard. Sadly, when illness enters your life, particularly one that is chronic, many people find themselves unexpectedly alone. Initially, people are keen to help and support, but as time passes and you remain ill people tend to drift away and you find yourself spending lengthy periods of time alone.

Often even the closest of friends and family stop calling or dropping by. Illness means you can't participate in the regular aspects of life. Spontaneous social engagements are difficult when you have to plan in elements like rest and medications. Pain, weakness and fatigue don't work on a schedule. Regular social engagements may become beyond your abilities. You may have to cancel events at the last minute or leave after 10 minutes. Friends and family stop asking you to go out and illness can become a lonely road.

Learning to be alone is imperative to managing and coping with illness. But it can be a hard skill to master, especially if you are someone who thrives being with others. Even having been comfortable being alone before I became ill, I do get lonely at times. Because we all need the comfort of connecting to another human being at some point.

But it is not just the physical presence of other people. It is possible to feel very alone even when surrounded by a room full of other people. A life with chronic illness has it's own unique set of issues, emotions, and events. When you are with others who aren't ill and they are discussing their lives at work, their kids, the latest movies they've seen, the regular events of life, you can feel like the odd woman out. There is a disconnect that can be hard to move past.

Yes we can connect with others who understand thanks to social media, but you still need to master the skill of being alone. Of being comfortable with your own company. I love that the video above says it can feel uncomfortable at first, but with time you can grow to love and appreciate being alone. It's not about avoiding other people or becoming a hermit (mind you, I could probably rock the hermit lifestyle) but more knowing it's okay to be alone and being able to cope when those times come. It's about discovering yourself and all the possibilities you never would find if you are always with others. Alone is not a dirty word or something to fear. It can be beautiful and desirable when you learn to appreciate all it can give.

Michelle :)

*Just a little note for all the uninformed doctors who don't believe that you can pass out sitting down. I was sitting on my chaise lounge with my feet up when I went arse up. But it's okay if you don't believe that can happen as long as you don't mind that I don't believe that you have any idea what you're talking about.