Recap: 30 days of blogging for #NHBPM.

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

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

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

As I wrote in Strength:

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

Keep on roaring, guys.

Cheers
Michelle :)

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

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

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.

Cheers

Michelle :)

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

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

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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.

Cheers
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.

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.

Cheers
Michelle :)

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!

Cheers
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.

Thankful despite the murk: Day 21 #NHBPM

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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".

Cheers
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.

Taboo:Day 13 #NHBPM

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Regular readers know that very little is taboo on this blog. I've written about the less savoury symptoms of Dysautonomia such as my gastrointestinal issues on many occasions. I've also written about a lot of the dark thoughts and dark times when it's all too much. I'm pretty much an open book. And every time I open up those places I find a whole community of people who have also felt the same way at some point, but thought that they were the only ones.

Taboos don't help us. Taboos lead to silence and silence means we feel alone. Being frightened or too embarrassed, to express how we feel, or to share our experiences leads to an unnecessary burden. One which we could avoid or minimise through openness. Chronic illness is hard and not just in the physical sense. The emotional aspects of a life of chronic pain or chronic ill health are frequently underestimated. Medical practitioners rarely discuss this aspect with their patients. And patients are in turn often reluctant to discuss it with their doctors.

We live in a society where stigmas still hold strong to any expression of emotional stress. I have written a lot about the mental health issues of living with a chronic illness, both as a natural response to living with a difficult diagnosis, and as a comorbid psychiatric diagnosis. Stress and chronic illness go hand in hand. From the fear and confusion when symptoms first present, to the often complex and disheartening process of diagnosis, to the reaction of others to illness that does not end with a cure, to simply adjusting to living with all the changes such diagnoses can bring, stress is par for the course for many.

Yet the pervasive message we get from society is that to admit such a normal stress response is a sign of weakness. And so we hide it. Western culture has developed into one where we are told to feel happy all the time. You see this in the every day reactions of those around us. We find the courage to say things are difficult and we are instantly met with a silencing platitude. "You just need to have a positive attitude', "You don't get more than you can handle", "Others have it worse" "Well at least it's not...." "You can't...." "You shouldn't....." All of which ends with a patient shutting down and hiding what they feel. This of course is then followed with the inevitable "What's wrong with me?" "Why can't I just feel happy?" "I shouldn't feel this way" and what was a normal reaction to a stressful situation transforms to an emotional burden.

How can you work through your feelings when you are made to feel bad or weak by simply experiencing them? Only through open discussion can we change this. Chronic illness is enough of a burden to deal with without adding the emotional burden of silence.

Grief and adjustment must be addressed. These aspects of a patient's experience should not be an after thought. It is known that patient attitude impacts on adherence to treatments. A patients perspective and emotional reactions will also impact greatly on how they deal with and interpret their symptoms. But often it is only at the point of crisis eg a patient ends up in hospital or a marriage ends, that this is addressed. And yet that added burden, particularly the degree of burden could be alleviated through open communication.

There is no shame in saying things are hard. You can't work through what you don't acknowledge. It takes courage to say that it's not okay sometimes, that you're not coping, that you want to yell at the next  well meaning person who wants to give you advice or tells you the sun will come up tomorrow, that some days you just want to pout or shout, or just be alone or irrational, or be a complete cow, or all the other things that go through our minds.

None of us are truly alone if we are willing to share our stories, warts and all.

And for that reason I'll keep writing this blog. I'll keep sharing the good and the bad. The crazy thoughts and the unglamourous side of this illness. If that means that even one person feels less alone or less crazy then it'll make it all worthwhile.

I'll keep chipping away at the silence and dispelling the taboo, because there is no other choice.

Cheers
Michelle :)

I love the line in this song, "I have a face I cannot show", it reminds me of all the times I've had to stuff down what I was feeling.


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