Tuesday 22 September 2015


The last couple of days I've made a change. I decided that I would try to get dressed everyday. I know getting dressed plays into my mood. Feeling physically bad leads to feeling mentally bad, leads to feeling physically bad, leads to...it feeds off itself. Feeling bad I am more inclined to stay in my pjs all day. The effort involved with showering and dressing is hard to explain if you're not chronically ill. But it's enough to know that it's prohibitive, and soon my appearance mimics my mood and body. When I get stuck in those ruts I feel worse and I really have to fight my way back out. When I put up the first photo yesterday I added a bracketed message about why I was't smiling.

Today when I shared the Instagram post on my Facebook page I wrote the same message....

(Can't smile as my facial muscles wont cooperate today, Mr Grumpy always says that it's my 'tell' when my face is flat and expressionless. Joy.)

....and it irritated me.

I've stewed on it all day. Why did I write it? Why am I apologising for something I have little to no control over?

The reality is that it's a physiological issue. Since I became ill I have developed progressive issues with my facial muscles. Initially, it began with a left-sided weakness that would appear when my symptoms were flaring. The left side of my face would become lax. I'd end up with ptosis and my mouth would droop (my delightful children called it Stroke Face, and it was always an indicator I was really unwell). When my overall symptoms improved, it would improve.

Soon the sensation on that side was permanently affected. It felt swollen and tingly. When I touched the flesh of my cheek it felt odd. Soon the droop stopped completely resolving. Now it is more obvious even on good days, becoming worse again when my symptoms flare. My eldest son, a photographer, took a photo of me last year and the difference in the muscles of my face was clearly evident when I attempted to hold my mouth shut. A wasting on the left, not matched on the right. A wasting in muscle that was matched by increasing weakness. The more I concentrated and tried to force the muscles the worse they behaved. From chin to hairline none were doing what they were supposed to do.

A Single Fibre EMG (SFEMG) revealed myotonia in the left side of my face two years ago. Since that time my control of my facial muscles has slipped. I try to smile and I can't. Or I grimace. When I force my muscles into positions they jump and twitch. The top lip on the right side of my mouth curls up spontaneously. Every now and then I get lucky. But the frequency is decreasing and the pain it causes in my muscles on the left is often not worth it. Unconscious smiles occur, but try to force one for a picture and it becomes increasingly difficult or impossible.

Mornings my face is blank. No expression. I rub my facial muscles and move my jaw to wake them up, but it can take hours. I find myself absently moving my jaw side to side, up and down, constantly trying to shake the weird sensations and get the muscles to comply. Some days it'll remain expressionless from sun up to sun down, no matter what I do. Apparently the complete lack of facial expression is the family's new indicator that I'm not doing well.

I look grumpy or blank. Not by choice. By physical pot luck. And still I apologise and explain.

There is such a pressure to smile in our society. Especially if your'e female. If you don't, you have Resting Bitch Face (RBF). I think about celebrities like Kristen Stewart who are constantly criticised for their lack of smiling. Hell, I've made comments myself. Now I sit here typing and I can see my own RBF reflected on the screen and I think, enough.

As a woman you are told constantly how to behave and what you should look like. Like many others I've heard many variations of the classic line, "Smile, love. It can't be that bad". Or another favourite, "you're so pretty when you smile". Because as women we are supposed to smile, no matter what. And if we don't there is something very wrong with us.

I know I've internalised that line of thinking.

I know every time I apologise for my lack of smiling,
or look at a picture and my internal critic goes into overdrive at my grimace or RBF.
Time to say, enough.

Enough, Michelle.
Enough of beating yourself up for what you can't control.
Enough of feeling self-concious for not smiling.
Enough of explaining.
Enough of apologising.

The people who know me, know I'm a happy person.
And those who don't and judge, don't matter.

If not smiling is the worst thing I do, I think I'll be okay.


*The idea that as women we should always smile is so ingrained in our society and I am not alone in being over it. Check out the Stop Telling Women to Smile campaign and art series.

Anyone who's read the blog for any length of time will know of my love of PJ Harvey. Her songs are so raw and unapologetic and my song choice for today is no different. Sheela-Na-Gig is unapologetic in composition and lyric, and fits my unapologetic mood today. As much as I hate using wikipedia as a source it has a reasonable explanation of the meaning behind the song, here.

Thursday 10 September 2015

Life with Chronic Illness is Incredibly Stressful. Ask the Question: RUOK? Not just today but all year round.

It's RUOK? day today in Australia and it's time to get involved. This initiative began in 2009 and has grown every year since. As the site explains:

"R U OK?Day is a national day of action dedicated to inspiring all Australians to ask family, friends and colleagues, ‘Are you ok?’ By regularly reaching out to one another and having open and honest conversations, we can all help build a more connected community and reduce our country’s high suicide rate."

"Connection and open, honest conversations are good for our wellbeing – whether or not we’re struggling with a problem. It helps us to feel valued and supported by the people around us. There's also an emerging body of research which links supportive social relationships and a sense of social connection with protective factors in suicide prevention."

As I wrote here the incidence of mental health issues such as depression or anxiety, are very high amongst those who live with chronic illness. As a group those with chronic illness are faced with illnesses and disability that are measured in years or, in some cases, life times. The physical toll is often high, but it is the mental and emotional toll, which often goes unknown by all but the sufferer, which frequently creates the greatest burden. It is important that we start the conversation about the mental health burden of chronic illness, particularly when it can often be managed successfully with appropriate support.

The issue is complex. Stress is often multi-factoral and many are reluctant to discuss their difficulties for fear of being perceived as weak or the stigma associated with mental health issues. Dysautonomia is an umbrella term for a complex series of disorders that arise from the malfunction of the autonomic nervous system. Some forms are rare, but even amongst the more common forms, they are rarely discussed and not easily identified. Patients often experience long and stressful journeys to diagnosis. Even once diagnosed, the complexities of the disorders and lack of information and treatment pathways lead to ongoing high levels of stress. Add to that the severity of sometimes disabling long term symptoms experienced by many and it is not surprising to find that if actually asked, many patients will respond that they may be functioning but they are not necessarily OK.

Those with chronic illnesses that are rare or poorly understood such as the Dysautonomias, often face a long and soul crushing journey to diagnosis. With symptoms that are frequently vague or fluctuating, patients are told "it's all in your head", "you just need to get out more", "you're depressed". These comments are rarely followed up with appropriate psychological support, instead many are faced with insinuation or outright accusations of malingering or lying. The story is repeated again and again on forums around the world. Even long after diagnosis these words continue to haunt patients who continue to hide their stress levels for fear of reigniting old accusations.

Being a chronic illness many find that their friendships and social relationships fall away over time. Friends who initially came around with a casserole or offered to take a child to school, call around with ever decreasing frequency or, simply disappear. Social isolation is a huge issues for many. Especially those patients in isolated or rural areas, or those in countries where little is known of the disorder. Even in larger cities and centres where there are more patients, it can be difficult to organise face-to-face meet ups with patients who are fatigued, have mobility issues and, thanks to the quirks of the disorder, may have to cancel engagements at the last minute. Whilst fellow patients may understand this, often friends and family do not and social invitations slowly evaporate. In my own case, many friends I thought would always stay by my side disappeared as my ill health increased. My circle of friends decreased over time until now I can count them on one hand. Although I would say chronic illness does aid in rapidly sorting the wheat from the chafe and whilst I may not have the same quantity of friendships the quality is far better. (online friendships have been a saviour, but that is another post).

Intimate relationships change. Husband and wife, becomes carer and patient. Trying to maintain a marriage in these circumstances can be very difficult without dedication. Often outside guidance and counselling is required to traverse the new and changing relationships. Marriage breakdown is common and even dating is often difficult. The strain of constant illness, inability or infrequency of intimacy, financial concerns, difficulty in maintaining roles such as house keeper, parent or cook can all mount to create problems in relationships. Additional difficulties can arise when a partner requires aid with personal care needs such as showering and toileting. Where does the role of husband stop and carer begin? Navigating these changes can be very difficult for couples many of who attempt to do this in private for fear of embarrassment or feeling like a failure. 

Parent/child relationships also change. Adult children may be forced to move in with aging parents. Conversely, young children can become carers for their adult parents. Parenting with chronic illness is difficult. Being able to care for small children when you can barely stand or are worried about passing out can be both heartbreaking and dangerous. Guilt is common. Even when the children enter the teenage years they may be forced to care for sick parents or are unable to socialise with friends and relationships can become strained. 

Many teenagers with Dysautonomia are unable to go to school or participate in regular teenage pursuits such as parties or sports. They are reliant upon parents at a time when they are normally asserting their independence. Again conflict can arise and strain exists for both patient and carer.

Work commitments are often challenged and unemployment is not uncommon for many patients. This creates not only a financial burden to families, but also a loss of identity. The first question asked at social functions is often "what do you do?" For someone recently unemployed this can be difficult to deal with and often those asking the questions are stumped as to what to ask next. For many, a career equals identity. We understand when someone says they are a doctor or teacher. There is a whole social schema that goes with each label. For many, myself included work was a joy. After years of study and working hard I had a job that I enjoyed and felt was making a difference in the lives of others. To give that up after a year of battling increasing Dysautonomia symptoms felt like the ultimate surrender. I felt like a failure. Added to that was the guilt of the financial burden I was placing upon my husband which was and continues to be high. 

Independence is often the first casualty of chronic illness. Simply being able to do the grocery shopping by yourself can be difficult. Many patients who experience frequent syncope are no longer allowed to drive which leaves them reliant on others for transportation. Being able to garden or go to the movies can be a Herculean task. A patients' identity can often seem lost with each small piece of independence that disappears. Spontaneity is no longer possible. A friend calling over for a quick, unexpected coffee can be overwhelming. Patients need to prepare for outings and entertaining through rest, medications, extra fluids and salt, after which they still may be unable to participate thanks to the unpredictable nature of the disorder. It is the normal social situations that others take for granted, particularly the small things such as going to a cafe, that are frequently reported as most missed by patients. And the inability to do such simple things often serves to highlight what they have lost.

Cognitive problems are also common in Dysautonomia thanks to poor cerebral perfusion, fatigue and medication issues. Patients are embarrassed by lapses in memory, inability to complete simple tasks, read a book or follow a conversation. For many, on a bad day, speech is impaired both cognitively and mechanically. Many withdraw from social interaction as they are either self-conscious or simply unable to take in all the competing information.

All of these issues are on top of the physical symptoms of the disorder with which patients contend with 24/7 (tachycardia, bradycardia, hypertension, hypotension, syncope, pre-syncope, weakness, fatigue, poor thermoregulatory control, gastrointestinal symptoms, urinary frequency, seizures, to name but a few). Whilst the physiological symptoms of Dysautonomia can be difficult to live with, it is the impact that they have on daily life, the social, psychological and emotional issues that many patients find the most challenging. 

The support for those suffering chronic illness is greatly lacking. Care fatigue ensues amongst friends and family as time passes and a patient either doesn't get better or, gets worse. Chronic illness doesn't fit into the normal sick paradigm associated with acute illness. There is no easily identifiable illness or injury, no clear and distinct treatment path and frequently no identifiable resolution after which the patient can resume their regular role in society. This leaves chronic illness patients vulnerable both medically and more importantly psychologically.

People stop asking if you're okay. As one of my readers wrote, "when I asked her why she didn't call to ask how I was, she responded "it's just your normal. I thought you were used to it"". Chronic illness patients are frequently forgotten until a crisis occurs. We develop means of coping, putting one foot in front of another, because there is no choice. There is no resolution as the disorder is chronic, you must learn a way to cope. Patients may smile and laugh , because they have learnt to find humour in the small things, but that doesn't mean everything is okay. It doesn't mean they are okay. It doesn't mean they are coping. Many are barely holding it together. Being strong for years on end is difficult. Sometimes we all need to be asked "R U OK?" 

Please take the time to ask the people in your lives R U OK? If you have someone in your life living with a chronic disabling illness like Dysautonomia take the time to truly ask "R U OK?" It wont take long and they will appreciate that you care. You don't have to solve their problems, just listen and be there. Start the conversation. 

If you are unsure how to ask someone, RUOK? Day has resources available. 

Importantly, if you're the one who isn't OK, but you're not sure how to tell someone or ask for help, they have information and resources here

You don't have to be in Australia to participate. Nor do you have to stick to one day a year. You can ask "R U OK?" anywhere, and any time. Start the conversation and change a life.

Cheers Michelle :)

If you like, feel free to share.

Monday 7 September 2015

When the world is falling freshen up your flamingoes and listen to Ben Lee.

New symptoms, medication side-effects, and a cry on the bathroom tiles. That has been the last few days. Well, weeks in truth. And exhaustion. I can't forget exhaustion, even if I wanted. It's perched on my shoulder weighing me down, be it in bed, or on the couch, or lying on the grass outside.

Shut down. My body. My brain. The world. All of it.

My recalcitrant body is winning at the moment. I'm not sure we're even playing the same game anymore. All the old rules no longer seem to work. So more tests, more symptoms, more tests, more....ad infinitum.

Words don't come. Thoughts jumble, tumble, and fall away.

Pieces fall. And no one picks them up. I'm not sure that they can.

I sat in the garden and let the new Spring sun fall on my face. I looked over at Natasha and Boris, my garden flamingoes. They were faded and battered. Yellowed, pastel pink enamel, looking used and sad.

I focused on the faded colours and couldn't let them go.

Paint was bought.

Beaks and legs were covered in Glad Wrap and sticky tape.

Two layers of pink enamel and they were alive once more.

It's a small act in the big scheme of things. But it's something. I slept after. I lay down in between coats. But when I look out in the backyard today and glimpse their shiny pink feathers it fans a little spark in my heart. Keeps it alive for another day.

It's the small things that make it okay when the world is pulling you under and your reserves are spent.
#lookingup flamingo in the evening.


In my tired state I couldn't find a clip to accompany the Ben Lee song, Everything is OK, from his new album Love is the Great Rebellion, but I like it a lot. It's simple and beautiful. There's a central couple of lines that are stuck in my head at the moment.  

(Here's a live stream version)

Everything is okay,
even when it's not
even when it's not. 

Wednesday 2 September 2015

Goat Suckers, Horse Kissers, and Pig Ticklers AKA Just Another Day in Chronic Illness.

(White-winged Nightjar, Eleothreptus candicans, source)

"What is another name for a Nightjar?" asks the host on the UK quiz show blasting from the wall of the radiology office.

Goat Sucker, Horse Kisser, and Pig Tickler, are the options offered up to the elderly contestant. Her floral dress, spectacles and hair set would not have seen her out of place in an episode of Keeping Up Appearances.

Is a Nightjar where you keep your Night Soil? A look of panic emerged on the face of Hyacinth's neighbour. Apparently not. While visions of old chamber pots ran through my head I learnt that a Nightjar is also known as a Goat Sucker and that none of the options were a euphemism for some sexual contortion. It's a bird if you're interested. No joint poo receptical or Karma Sutra involved. Too much time in gastroenterology offices means I have poo on the brain. Living with a juvenile husband also means euphemisms pop into my mind by default.

TV in waiting rooms tends to be dull, so a low budget British quiz show, hosted by the guy from Law & Order UK, was welcomed. Although I should add a disclaimer. I was slightly delirious from walking/stumbling ten thousand kilometres to the door of the radiology office, which despite the sign is not near the obvious carpark. Instead it's down a long walkway around a couple of corners and at the back of the building, where there is another hidden carpark. So really, a mind numbingly boring episode of Law TV from one of the infomercial channels may have been deemed exciting by that point. Hell, I may have even enthusiastically paid $5.45 a minute, for a reading from Psychic TV, by the time I finally wheezed that I was there for  my 3:45 ultrasound.

A woman who would not have looked out of place as a screw in an episode of Prisoner, sat at the top of ramp, a series of light panels in front. As she smugly regaled the serfs/contestants below with her knowledge of monotremes and spiny anteaters, I mumble that she shouldn't be so smug if she doesn't mention they are actually known as echidnas. But she can't hear me, and the woman two seats down who can, looks like she'd rather move further away from the strange wheezing woman talking to the TV.

Tap tap tap. Tap my foot and squirm in my seat while a guy with a magnificent mullet answers another question. Drink one litre of fluids before the scan, she said. Don't pee after two, she said. Damn it's not a mullet after all, just really long hair pulled back at the top. You'll always be Mullet Man to me UK quiz show contestant. Because I need to focus on a non-existent mullet to stop thinking about the litre of water I have consumed to have a full bladder ready to squish and scan.

Tap tap tap. Call me now please or you'll have one litre of water on your ugly brown and black carpet squares.

Governess Merciless. Oh this just gets better. The screw at the top of the ramp is a wrestler. There a mention of red latex. Oh British TV, I think I love you.

Hold the water, even when you're there for abnormally frequent peeing. Hold it in. Hold it in. Luckily I threw up some of the litre so it's not quite so bad. Well from a pee on the carpet perspective, not so much from a watery spew as you hold onto the side of the porcelain at home perspective. But I have topped up since so who knows how much is in there.

Come on people. Scan me. Let me pee or puke. A gross choose your own adventure. It's coming out somewhere. Once upon a time I could drink water without wanting to puke. I could also eat without wanting to puke. And not worry about peeing in a waiting room. Or at least I think so. My memory is pretty hazy these days.

Here we go. Maybe. No? The other guy left. There's only me now. Please hurry. Tap tap tap. Squirm. Rearrange. Wait. Watch Mullet Man and wrestling screw in their battle of wits.

3:45 comes and goes.

Tick tick tick. The clock behind the admin desk measures the increasing sensations in my nether regions with each nerve rending tick. Tick tick tick could become drip drip drip any second.

Wait? What? It's my turn? Okay.

Stumble down the corridor and into the mood lit room. Lie on the table while a stranger rubs KY on my stomach and scans my bladder. He hesitates.

There's only 40mls in there. What? No that's not possible. I drank it all. I feel like I need to go.  I topped up after my spew. Where has it gone? What? I have to drink more? More waiting? Just 40 minutes more. At the sight of my crestfallen face, he repeats the just. Like that makes it better.

Back in the waiting room and more UK quiz show. Less excitement and interest this time as I am handed more cups of water to drink and wait. Wait wait wait. Pull a magazine out of my bag and read.

Kegal, kegal, kegal. Squirm and read. Read and re-read as each pang in my bladder says I need to pee. More water. Wait. Can't concentrate now. Did you know that a decrease in cognitive ability has been recorded in people who really need to pee? People study these things. When you are busting to pee, your brain turns to mush. Add that to pre-existing brainfog, and I may have been the intellectual equivalent of a rock, sitting on the orange chair staring and mouth breathing at the magazine in my lap.

The admin lady is packing up. People are leaving. Come on. Scan me. Scan me. Tap. Tap. Tap. Squirm. Squirm. Squirm. Kegal. Kegal. Kegal.

Finally. 3 hours since I last peed I am scanned again. 80 fricken mls.

My body is the Tardis. And somewhere in the endless interior of my body, is a well of water. Sitting, waiting, refusing to budge. And yet I still need to pee.

I wall walk out to the waiting room once more. The UK quiz show is over. I pay for the pleasure and wait for my disc. Maybe if I asked Governess Merciless to order the water to stop loitering in my stomach, or behind my pancreas, or near my patella, or wherever it's hiding, it would move to my bladder quick smart.

After 3 hours I make my way back down the concrete and wooden corridor to the car, contemplating the fact I can't even get a scan right.

But at least I have learnt something new thanks to Hyacynth Bouquet's neighbour, Mullet Man and Governess Merciless.  Night Jars are Goat Suckers and as Wikipedia tells me Goat Suckers are Chupracabras. And last night I watched an episode of Grimm about Chupracabras. Life comes full circle. And just like that, all that water finally found it's way out at 5am this morning.


And because I'm pretty sure my bladder and body are telling me they don't care what I want, I give you Transvision Vamp and Baby I Don't Care (1989).