Smile.

(source)

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.

Michelle

*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.

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.

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.

Michelle

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. 

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.

Michelle

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).

The Lie of Giving Up and Falling Apart.

"Giving up is easy" says the meme up above.

"Falling apart" is bad.

"True strength" is only when you don't give up or fall apart.

This is a clear and persistent belief in our society.

Having fallen apart on more than one occasion I am clearly weak. I have failed the true strength test.

And yet here I am still kicking on. Loser that I am.

I understand why people post memes like this. I understand that for some they are indeed inspirational. But the simplistic inspirational narrative in these kind of memes irritate the hell out of me.

What exactly is wrong with falling apart? And what exactly constitutes falling apart?

There are times in life that things reach crisis point and you fall apart. You can't cope. You cry and withdraw. Shake your fists at the sky and scream about the injustice of life. There are times when it feels like the tide of human existence is going to swamp you and all you can do is feel despair. You aren't falling apart you are experiencing real emotions and behavioural reactions to a stressful life.

When I see memes like the one above I think of the countless emails I receive from fellow patients who are overwhelmed not only by their physical symptoms and social and psychological stressors associated with that, but also the overwhelming sense that they are failing or doing illness wrong because they can't hold it together.

Illness is stress. Chronic illness often means that stress will never fully go away. People aren't falling apart when their stress levels reach critical levels. They aren't giving up when they voice that stress and can't hold it all together. They are human beings, experiencing real and valid emotions to a prolonged highly stressful situation. We should not be jumping on them with judgements about giving up and the evil of falling apart, but offering them support, a place to voice their fears and sadness, and direction to appropriate mental health groups to help them navigate the complex and stressful world of chronic illness.

Should we add yet another burden to the list, pretend it's all okay and hold it all together, at least in the public view?

As  I've written many times on this blog, giving voice to the negative aspects of illness, not coping every second of every day, and admitting you are overwhelmed is not giving up. In a way it requires far more courage to admit the truth of falling apart in face of a society that values the perfect presentation of a person with illness who always "holds it together."

Inspirational sick person narratives are rife.

Flawed, complex sick person narratives are jumped on and wiped away with relentless regularity.

Admit a flaw and you are giving up.

Admit that it's hard and you are giving up.

Admit you can't hold it all together all the time and you are giving up.

Giving up by admitting it's hard and it falls apart, isn't the easy option. A false face is the easy option. No one questions the perpetually,perky smile, I've got it all under control, narrative, because that's what the world wants to hear. To salve their own fears. Sometimes to salve our own.

If we truly want to promote mental health we need to move away from judgemental narratives about giving up and that falling apart is the worst thing you can do. If we want people to seek help we must be open about the times it all comes crashing down, and that we don't actually have to be the popular version of strong ALL the time.

I've fallen apart many times in my life, not just in the last nine years of illness. Because I am human, not some super woman. I have strength. A strength which is true to me, even if others can't see it.

And for every single person who sends me emails, or is sitting at home right now reading this who feels like they are falling apart, or are afraid others will judge them if they voice their struggle, please know you aren't abnormal, you aren't doing illness wrong, you are stuck in a shitty and incredible hard and stressful situation right now and responding in a totally human way, but there is help available and there are others out here in the ether who get it and understand.

There is strength in giving voice to the struggle.

Screw the lie of giving up and falling apart.

You are not alone.

Michelle

It's okay to ask for help.

Here are some starter services in Australia. Most countries will have similar programs.

Australian Psychological Society (has a find a psychologist function)
Kids Helpline
Headspace
Lifeline
Beyond Blue
Suicide Line

This may be one of my favourite First Aid Kit lines:

I always thought you'd be here

But shit gets fucked up and people just disappear

In the case of chronic illness shit gets fucked up and life is hard. We don't have to pretend it's all sunshine and lollipops. 

Inequalities in medication access: Ondansetron. AKA If you want to not vomit be prepared to pay with your left kidney and first born.

(source)

It's the wave first. The rolling wave of warmth. The clench in my abdomen. Foul saliva that fills the mouth. It passes for a second and I think I'm okay. I take another bite. And it hits again. Harder than last time. And gone. Play the rookie and believe that it's over. Momentary. Fleeting.  Hope. Delusion. That lovely little fantasy land where nausea doesn't exist. Nor vomit rising in my throat. The sweat that doesn't come thanks to anhidrosis but my body still tells me is there. Phantom sweat? The limb equivalent in a body that just as stubborn as it's resident, likes to pretend it's still like all the other kids. Place a little minty wafer on the tongue. Feel it dissolve. Let the hope be absorbed into the oral mucosa....

....Sitting in the loo down the alley way next to the cafe. Focus on the hole in the scuffed plasterboard and the wad of old dusty newspaper used to fill it. Try to read the words in the creases. Wave on wave hits and I am forced to put my head between my legs. Raise my head and it hits again. Open up my bag grab another wafer in it's little foil pack. This time. This one....

....Sitting in the car in the carpark waiting for my youngest to get out of the university open day. Spitting out a frantic “I'm going to vomit!” as my eldest looks on helpless. I've done too much. I know it. I knew it in the cafe and the specialist's room before. On the drive down and in the shower before we even left home. But what can you do? Life doesn't stop because you're ill, because your body forgets how to hold food. Another wafer. A last gasp....

....Four's the limit for the day and here I am on number three already. A three hour car trip awaits while I weigh up taking another tiny wafer or simply stapling a puke bag to my face....

Nausea is debilitating.

It affects eating.

Sitting up.

Walking.

Talking.

Simply getting through the day.

I have tried home remedies. A plethora of options from the chemist. And many prescription medications.

It is a daily symptom. A combination of a malfunctioning digestive system and periodic blood pressure issues. Dehydration adds it's own joy to the mix and suddenly even the thought of food, or water, has me running for the loo or grabbing a puke bag.

Eating is now a chore. I feel sick before I eat, while I eat and after I eat. Vomit and I meet up on a regular basis.

I am losing weight. Far more than I should. I am unable to absorb my food properly so that the small amount I force in still doesn't give me all the nutrition or calories I require. Even when I can get it to stay down, I still fight to maintain a weight that wont budge from the underweight range.

I have dealt with this particular issue for 9 years now.

After much trial and error I have finally found a drug that can help. It takes the edge off and allows me to eat a little more and have a better chance of keeping it in.

Ondansetron.

I am not alone in loving this little wafer. For many in the Dysautonomia and Gastroparesis communities it is the only drug that even comes close to taking the edge off the nausea.

The only problem? Cost.

Ondansetron is subsidised on the Pharmaceutical Benefits Scheme (PBS) for the following:

Management of nausea and vomiting associated with radiotherapy being used to treat malignancy.

Management of nausea and vomiting associated with cytotoxic chemotherapy being used in the treatment of malignancy which occurs within 48 hours of chemotherapy administration (May be extended for up to 7 days.)

For patients with other conditions also undergoing chemotherapy there is no subsidy.

For those with unremitting nausea due to others conditions such as Gastroparesis or Dysautonomia there is no subsidy. Not even women experiencing Hyperemesis Gravidarum during pregnancy can access the subsidy.

This is what a 4mg $3 wafer of Ondansetron looks like.

(Green jelly bean for size comparison. Green jelly bean promptly eaten after photo taken.)

On a bad day up to 4 can be taken or $12 a day, or $84 a bad week.

My dietician suggested I take it before each of 6 small meals a day or $18 a day, or $126 a bad week. (Luckily, I can't stomach 6 small meals a day)

It can only be bought in 10 packs. Or 2 ½ days worth if you're in a bad patch. Unless you have a doctor who will give you 5 repeats on the script. Even then you can't stock up. One repeat at a time.

So patients put up with nausea and vomiting. Lose weight and end up malnourished. Relief and potential functioning is put aside thanks to financial constraints.

Loopholes and less legal means are employed by some desperate patients. I am ecstatic when I present at ED and as part of my overall stabilisation, a shot of Ondansetron is injected into my cannula. One less dose I have to pay for.

By comparison, in New Zealand fellow patients pay roughly $5 for 50 of the same drug at 4mg and roughly $6 for 50 0f the 8mg version, and some even less. It is also routinely prescribed in the US under the name Zofran, yet here we continue to struggle with access.

For most of us this is only one out of many prescription medications we take. The financial burden of management always at the forefront of our minds. (Between over the counter, supplements, and prescription medications I take 14 different medications. 11 every day. The other 3 are break through medications. Plus a medical grade food supplement drink when I cannot stomach solids at all.) Costs and symptom/illness management must be weighed up. Frequently, even for patients who are vomiting multiple times a day, the financial burden is too great. Leading to poor illness management and more frequent ED and hospital admissions. For a government who espouses a need to cut costs, a costly ED or hospital stay and increased disability and care needs, hardly equates to the best financial option when weighed across subsidising a medication like Ondansetron for patients who have unsuccessfully trialed multiple other antiemetics and antinauseants.

I, like many others, take Ondansetron sparingly. Quality of life is reduced. Ability to function is reduced. But the cost, which as it is not on the PBS other than the situations mentioned above, cannot count towards the PBS Safety Net. A double hit for patients already struggling. A subsidised script is also not covered by Health Care Card, for those on pensions. A small change to the access criteria would allow Australian residents to access a very effective medication option that our fellow patients access with comparative ease overseas.

With no cure in sight and treatment only in the form of symptom management and off label prescribing, this is a burden both financially and functionally, that patients should not have to bear. Ondansetron is not a drug for all patients and like all medications should only be prescribed based on individual need. But it is hard to understand why the exact same disabling symptom, nausea and vomiting that doesn't respond to other medical options, should only be subsidised if you meet two very specific criteria. I don't begrudge those who qualify a single mg, but I do want a word with the bureaucrats who make the decisions. I am tired, exhausted and malnourished. And my tolerance for health care bureaucracy and the taste of bile is waning at an accelerated rate. 

….So I lay down in the car for the trip home. I kept swallowing down the vomit and riding out the waves of heat and phantom sweat. Breathing through the worst of it. Willing my body to quiescence. A fourth wafer the bridge too far financially. Ride it out. Hold the puke bag. Prepare the family that we may have to stop suddenly. “Now” means NOW. Throw up on the side of the road. In the rancid loo at the petrol station where the doors don't lock and the floor is always wet, or the one where the lights don't work and plastic seats are met with a combination of hope and desperation. So familiar. Too familiar.

Michelle

*I have recently discovered that if your doctor writes a prescription for 30 wafers at a time it saves you a considerable amount ie it comes down to about $2 a wafer rather than $3. Equalling about a $30 saving overall, compared to the usual $30 for 10.

**Then if you have private insurance most will cover the gap in costs from the standard PBS price (around $37) which brings the price down to about $1. But like everything there is usually a limit to how much you can claim.

***Ondansetron is only one example of similar discrepancies in access to medications for the same symptom but different aetiology affecting Dysautonomia patients in Australia. For example, Octreotide is subsidised for 3 set criteria. Cost outside of those criteria is quoted as approximately $4,000 a month, making it effectively inaccessible. But the whole vomit/nausea mess is making access to Ondansetron very salient at present.

***8UPDATE: my local member has written to the Health Minister Susan Ley on my behalf. Will let you know when I hear more. Thank you to Darren Chester MP for taking the time to read my letter, this post and contacting the Health Minister. 

You might also want to check out:

The Price of Health
Pukefest 2011: The Most Craptastic Event of the Year.
Accessing IV Saline: A lesson in futility.
Six Months in Chronic Illness

Goyte's song Thanks for Your Time, about the ridiculousness of automated bureaucracy and phone cues just seems appropriate.

You have been placed in a queue

But your call is valuable

It's very valuable

We hope this doesn't inconvenience you

Because you're valuable

You're so very valuable!

Hear me.

A Facebook page I follow, recently asked those living with invisible disability:

"What's the one thing you wish people would say to you?"

It took me a long time to think of an answer. Admittedly, I have tipped over to the visible disability camp the last few years, but I still get the "but you don't look sick/disabled" comments with such frequency, that it would seem that I still fall into the not looking sick/disabled-enough camp. Go society and it's continued desire to hold on tightly to the myths and stereotypes around disability. But, I have spent enough years in the invisible camp, that it's legacy is still keenly felt.

A version of "I believe you," was sought by many. As was "What can I do to help?" I understand both of these. Belief was definitely lacking at the start, be it strangers, friends, family or medical practitioners. It was frustrating and disheartening and left me feeling alone. It also took a huge toll on my self-confidence as I internalised the lack of belief and started to doubt myself. Am I really sick? and Should I really just suck it up? were on repeat in my mind. And they were destructive. The current state of my body makes a mockery of those questions. Even at the start, passing out and a heart rate that wanted to go from bradycardia to tachycardia on a never ending loop wasn't exactly normal. Belief became my holy grail. It continues to be the holy grail for many. Sadly, even with concrete diagnosis belief can still be a missing factor. As such an expression of belief is understandably, high on the list of many.

A lack of help is another I understand only too well. As I wrote in No Casseroles for You, help is not often forthcoming for those with chronic illness, many of which are invisible. Often just like you can't see a chronic illness or disability, you cannot see its consequences. Alternately, it's chronic nature leads to care fatigue for those around us. When a disorder is measured in years or a lifetime, it is hard for many to maintain caring for that length of time. There are certain illnesses that are known as casserole illnesses. Those whose name inspire instant understanding of need and seriousness. That activate whole communities to action. And then there are those like Dysautonomia that are never, or rarely, invited to the party. Having said that, I know from friends who live with the well known casserole illnesses and, if they continue on over time, even they experience the effects of care fatigue. The inundation of initial help has an unmentioned but clearly defined shelf life. After which it dwindles away. If this happens for the well known disorders what does that mean for those of us who aren't even in the running? How I longed for someone to bring over a meal or offer to vacuum. Especially in the early days where I left work and was struggling to find medications that took the edge of my symptoms. But apart from two people, who have very generous hearts, it never eventuated. Outside of a couple of specific disorders, there were simply no services for seriously ill mum's in their 30s in my region. And living in an area with sparse general services, if family and friends didn't step up, you were left to fend for yourself.

I know all of this, but still I struggled with a response to the question.

When I sat and thought about my experiences, I realised that I don't want the people around me to say anything.

I want them to be silent.

Instead,

I want them to hear me. 

Really, hear me. 

In essence, both of the responses regarding belief and help are also about hearing. Hearing exactly what is going on. Hearing what my doctors have said. Hearing the expert knowledge I have about my life and disorder. Hearing about my needs. Not the needs you think I have. I still have vivid memories of the wall of milk that turned up on the doorstep of a family member after the loss of a loved one. Milk. We were trying to find places for milk for days. We froze it. Drank it until we were sick and threw out all we couldn't get through. I understand that people wanted to help. To do something. But 2,000 litres of milk was not a kindness. The community saw a need, but they didn't take the time to ask how that need might best be met. Even when other options were suggested, the tsunami of milk continued.

Hearing would alleviate so many problems. And part of truly hearing is active listening.

Active listening has a number of parts, but this is the one I really wish others would employ.

(University of Adelaide: Active Listening)

Illness comes with a whole host of judgments and assumptions. I should be better by now, I don't look sick or disabled enough, I just need to exercise, be more positive, I don't complain so I must be coping, I don't need help, it's not that serious, it's not like I have [insert illness of choice], if So-And-So can do it, so can you, ..... The judgements are automatic and fired off with relentless regularity. So much so they are parodied on many patient support sites.

They are so ingrained that many do not even realise that they are seeing you through that lens, or that their responses are influenced by those negative beliefs.

I don't want people to say anything in particular to me. I just want them to hear me. To actively listen when I speak. To understand that I am the expert in me and my needs. Being chronically ill is difficult, but so often it is not the illness or symptoms that end up being the hardest part to deal with. Instead it is often the reactions of others to our being ill.

I would add that we are not a homogeneous group. We do not all have the same experiences or needs. And our needs may be very different to what you would want in the same circumstances. When I hear fellow patients being told they are ungrateful for simply saying that they didn't need a particular form of help, or suggesting another way to help only to have it dismissed, it is clear that active listening has not taken place. That they have not been heard.

I know people mean well. I know they don't intend to make the lives of the invisibly ill or disabled harder. But as the old saying goes, the road to hell is paved with good intentions. Stop. Take a step back. Check your assumptions at the door. And listen.

Active listening is a skill. It is not instinctual for many, but it can be learnt. And that is a kindness to all.

Hear me.

That is the one thing I want from others.

Michelle

The Ramones, Learn to Listen, (1989)

High Voltage

There's a park across the road from my house. Straight across. 50 paces at most. I've been there twice since we moved here 18 months ago. I watch the neighbourhood kids ride their bikes and argue over who's turn it is next for the swings. Others walk their dogs every night. The lady with the two golden boxers that prance and bound. The older couple with the tiny white puff balls assured they own the world. That one guy who refuses to leash his dog and starts the raised hackles and lunging.

I envy them. The normalcy of life. The ease with which they walk. It's a chore for some. You can see it on their taut faces and hunched shoulders. Especially on the cold nights. Of which we have many of late. Winter is biting and walking at dusk is not a pleasantry. I don't need to see their faces, hidden beneath scarfs, flipped collars, beanies and tucked chins. Bodies are contorted to their smallest in a hopeless attempt to avoid notice of cutting wind and sharp air. Pace is quickened lured by waiting heaters and warm meals. All of them have one thing in common. They are unaware of the gift that they experience.

Walking isn't something I ever really thought about. I just did. I got up. Moved my legs. And off I went. I walked around shopping centres. With my dog. Though the NGV. Across Vietnam. I thought about it about as much as I thought about my ability to be independent. Which is never. Then I became ill and walking became complex and independence faded.

On a bad day I cannot walk. Mr Grumpy has picked me up off the couch on more than one occasion my legs little more than useless lumps of flesh. Other times they crumple beneath me. I have crawled around my house. From bed to bathroom and couch. I have moved from chair to chair to chair throughout my house. On good days I can walk a little. But my limbs fatigue. As distance and time increase I am reduced to little more than shuffle. I watch my feet as I walk and hear them them scrape slowly across the ground beneath my sensible soles. My knees stop bending and my muscles start to forget how to coordinate. I end up at a snails pace. Exhausted. Trembling. On a good day.

I don't tend to walk anywhere alone. My confidence is shot. In my honest moments I know I'm unsafe. I know that I'm a fall risk. I know. I now know I am a fracture risk should I fall. I know. But I long to walk alone.

I have a wheelchair, Vera, but I can't self propel. I am bound not to the chair, but my weakened limbs. Nearly 8 months later I am bound by an OT referral and review that are yet to eventuate. I am bound by a lack of funds that mean I am unable to upgrade to independence without subsidies and referrals.

Last week I had a Fuck It moment. I went for a walk. I was home by myself. There was no discussion. No one to talk me out of it or suggest they come along. I just did.

Don't think. Do.

I grabbed Francesca, my walking stick. Wrapped a scarf around my neck and stumbled out the door. I steadied myself on the edge of the house and let my body find some sense of equilibrium. Let go and walked.

Down the driveway and on to the road. At the bend in the road ahead sits the blue-grey electricity box. My goal. An unimpressive dusty metal box next to the pathway into the next housing estate. Not the logical choice of inspiration. A utilitarian blight on the landscape. A shining point in the distance. A need and a want. Mindless stubbornness matched perfectly to bland vented mechanics.

(It's up there in the top left corner. A square smudge of blue-grey.)

The local magpie family sit in the road ahead. The same family that take up residence on the fence and taunt Freyja with their warbling chorus and flapping of wings. Just out of reach. Ignoring her barks and excitement. Occasionally they fly up in a burst only to land a mocking one metre further down the fence.

They swoop each other in play. Sing and glide from light post, to fence to tree and road. As a group they rise from the bitumen to land in bushes and bare branches as I approach. Only to land behind me once more as I pass their roost.

Watch the dip. The glide. The bickering. The song.

And then I was stepping up on the rough walkway. Overturned earth and weeds of construction. The pile of car window glass and lolly wrappers. Touching the cold blue-grey metal and the High Voltage sign. Unbending resisting fingers to lay my hand flat against the dusty paint.

Metal against my back I looked back at my house. Ragged breaths waiting to be caught. So close but so far away. And so pleasing. A rest. A stumble and false start. And then back I went.

The same magpie clan warbling on the fence. Singing as I continued my slow and unsteady steps.

A moment of "this was not a good idea, Michelle," as my blood pressure started to dive and my legs tremble. But stubbornness and an overwhelming desire not to faceplant in the middle of the street can work wonders. I have no desire for a moment's independence to be trampled by strangers picking me up off the road.

The wind crisp. The sky grey. Glorious.

Don't think Do. Don't think Do.

I stumbled across the word 'Ukiyo' the other day.  The floating world. "living in the moment." That's where I exist most of the time. Where I exist in walks that thought and planning would otherwise tell me no. Ukiyo. The perfect word. Do and enjoy it. Do free of the bothers of life and broken bodies.

I made it back to the house. Opened the door and slide down to the tiles. I made it. I did it alone. And no one was there to reprimand or fuss. Well except for a Great Dane who thought that I had left for ever and was overjoyed at my return, and concerned that I was lying crumpled on the tiles.

I did it.

It wasn't a chore. It was icy cold but I didn't care. And I was fully aware of the gift.

(Resistant facial muscles make a smile hard, especially on the left side of my face. 

But sometimes the effort and post smile pain is worth it.)

Michelle

You ask me why I like to dance

And you ask me why I like to sing

And you ask me why I like to play

I got to get my kicks some way

(High Voltage, AC/DC, 1976)

2015 Write-ability Fellowship Applications are open. Time to suck up the self-doubt and apply.

Writing has been a godsend for me over the last nine years of illness. I'm not quite sure what I would have done if I hadn't found my words again. When illness came knocking I fell apart. All the pieces of me were scattered on the floor and I had no idea where to start to put them back together. Now as I sit here typing I realise I have managed to glue most of me back together. Not necessarily in the same way as before I became ill, but that's not a bad thing.

In many ways illness has allowed me to reinvent myself and pursue paths that I had shoved aside in favour of career, family and life. Writing was a natural outlet when I was younger. I used to watch black and white movies on the weekend and write myself into the plots. I'd read a book and write myself into the pages or fantasise alternative plot lines where I'd be slaying orcs or wandering over English moors alongside the main characters. Poetry and short stories were written in blue biro in the back of note books and in secret diaries. It was an important part of my life. 

Over time that writing went by the wayside, to be replaced by writing protocols and lengthy patient reports. Then illness hit and nothing. When 2 years later a social worker suggested that I start writing again I was unsure. But I took the plunge and rediscovered that old love. And those words and the process have had a healing effect. But my confidence still wasn't there.

"Each time the words build up and there is no room to breathe. Then slowly they trickle from my mind to my fingers and fall on the keyboard. I watch them appear on the screen in front of me, slowly drawing the venom from the bite of bad news. And then there's room to breathe again. My spirit is lighter and I can face the day. That is writing for me." (Writing Myself, 2014)

When the Write-ability Fellowships came up in my timeline I was reluctant to apply. I had been to a few Write-ability workshops and been both inspired and worried that I was in over my head. I saved the application form and closed the tab. I reopened it and closed it more times than I could count, convinced that I had no hope and that my writing was too poor. I wanted to write my memoir, something that was scattered in pieces throughout my computer, but my confidence and organisational skills were a mess. On the last day I had a "Stuff it!" moment and sent in my application with a sample of my work.

When I was selected it didn't seem real. I was shocked. I double checked the email to see if I'd read it right. And there it was I had been selected and was paired with a mentor. Sam Twyford-Moore was incredibly supportive and helped to build my confidence and writing skills. Books and writers I would never have found now fill my bookshelf. Aspects of writing I had never considered were discussed and knowledge generously shared. I was also given the boost I really needed to continue and finally a real "maybe I can do this" moment. 

To have someone in the field help, encourage and guide is a fantastic opportunity. Since that time I have direction. Outlines have been created to tame my scattered mind. And I received the kick up the bum I needed to get excited about writing again. Amazing what you can get out of 6hrs! 

Being part of that program opened up opportunities that I would never have imagined and while I still have a shocking case of Imposter Syndrome I am also content to call myself a writer without cringing (okay so there is still a little cringe of unworthiness, but it's a process and I am working hard to reign it in.)

I have been lucky to be introduced to what is a very welcoming and encouraging Victorian writing scene. I have spoken at the Emerging Writers Festival and had two pieces published by Kill Your Darlings and been part of the Day in the Life series during the Digital Writers Festival. 


Kill Your Darlings: 21
Sucker Punched: Ducking and Weaving Through the Grief of Chronic Illness. 

Kill Your Darlings Blog
It's All Just Preparation for the Zombie Apocalypse.

A month ago I sat in a freezing warehouse in the Melbourne CBD watching writers speak about their weird obsessions. I had just been up there myself, microphone in hand, opening up about my love of zombies. And I realised that life truly is unexpected and sometimes absolutely fantastic.

Now while not everyone dreams of talking about zombies at a writers' festival, you never know what the future may hold. If I had never taken the plunge to apply for a Write-ability Fellowship last year I know it would not have happened.

If you are a Victorian resident who lives with disability and loves to write I encourage you to apply. Poetry, screenwriting, memoir or fiction writing it doesn't matter. If you think you've got what it takes, or even if your confidence is not just in the toilet but flushed and on the way for processing, take a deep breath and apply. You can hyperventilate into a brown paper bag later.

Even if you don't get selected in this round, I encourage you to head along to one of the Write-ability workshops or monthly get togethers and join Writers Victoria (very affordable if you live in country Victoria.) 

Applications close: 5pm Monday 3rd August 2015

4pm, 4th July 2016
4pm, Monday, July 10, 2017

Apply here

Michelle

I thought this an appropriate musical accompaniment. I used to have a very particular view of what of what I wanted and what my life would look like. Then my world fell apart and came back together to give me just want I needed.