Thursday, 23 July 2015

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)

Wednesday, 22 July 2015

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)

Friday, 3 July 2015

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


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
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. 

Friday, 26 June 2015

Happy 22nd Anniversary, Mr Grumpy.


(He even puts up with me trying to do arty shots in cafes)

One minute you're sitting in your parent's loungeroom eating KFC and waiting for your friend Kristen to arrive to do your wedding makeup, and the next you are writing a post about celebrating 22 years of marriage. I'm not sure how that happened but it did. I am now a grown up, with one adult and another nearly adult child, and the makings of a silver fox who thinks it hilarious to hit me in the face with the edge of his pillow each night.

22 years. I could be all soppy and sentimental. He is the love of my life. And I can't imagine my life without him. He makes me feel safe and loved. And I know he has my back and supports all my crazy schemes. That's all true. It's also true that he drives me insane at times and that I have been known to throw that stupid pillow of his, that he thinks is so funny, far across the room. Or hidden it. So he has to search high and low while I end up in increasing fits of laughter. While he laugh/growls "Enough Michelle. Just tell me where you put it." Making me laugh so hard it hurts and I sit perilously on the edge of passing out (so worth it.)

We met at 17 and 18 and I sometimes think we are still stuck there, having not really grown up since that point. Young at heart even if there are now saggy bits and wrinkly bits, belt tilts, and grey/glitter hairs in all the hairy realms of the body. We still giggle and laugh at stupid things. And our youngest has been known to tell us to grow up. Maybe that's why we've lasted so long? Giggle like teenagers at every fart or when the commentators mention Goldsack on the football, and you too can make it to 22 years, or 24 if you count the years pre-marriage.

When people ask how are we still together we have been known to simultaneously say "Apathy." Before pissing ourselves laughing. And maybe that's the key. We laugh. A lot.

Life is hard. There are disappointments and heartache. Laughter makes it all bearable. And finding someone who can laugh with you through it all makes the scales fall more in favour of fun and joy. And less about the hard stuff even when you're smack in the middle of it.

Recently we realised we have morphed into the same person. When Ella Hooper put up a photo of her and Vika and Linda Bull, we both left a comment. The same comment. 8 hours apart.


This is what so long together can do to a couple. Maybe folie a deux is the secret? It seems to work for us.

I am often told I am lucky to have him. I am lucky he's stuck around. I want to punch people who say that. Nine times out of ten the implication is that I am such a horrible burden that it is amazing he's still here and he's pretty much reached saint levels of tolerance and self-sacrifice. Though I'm not sure if saints laugh hysterically when they don't tell you they have done the poo from hell and you step into the bathroom and are nearly taken out by chemical warfare courtesy of their nether regions. I wonder if that's what folk mean when they say I'm lucky.

But I am lucky. And not just because he stuck around. I am lucky that through some fluke of life I met The One way back in 1991. I am lucky that he lets me be me, and even celebrates my crazy. I am lucky that he supports everything I do and even if he doesn't agree he'll defend me to anyone who gives me crap. I am lucky that even when we fight it can end with "I love you, you stupid arsehole." I am lucky that we frequently end up in juvenile giggles over stupid childish things like pillows in faces and "I'm not touching you" when we are both in our 40's. I am lucky that despite his faults and mine we have somehow morphed into the same person who writes the same thing on a singer's Facebook post.

I am lucky he's mine. And I am his. Two whole people who somehow gel together in some messy, imperfect, juvenile and love-filled way.

Happy 22nd Anniversary Mr Grumpy.



Michelle xx

Sing it Nina.

Thursday, 25 June 2015

The pressure to be ON.


A few years back I mentioned on Facebook that I had an awkward exchange at a local supermarket. A worker had come up alongside me in an aisle and demanded to know why I was using a walking stick. I was not in the mood. I was tired, trying not to vomit, and simply wanted to buy my food and go home. I gave her a terse, “because I need to” and walked off. I mentioned how rude I felt the encounter was and how frustrating it is that strangers think they have the right to my private medical information and an explanation of my life circumstances. A follower took exception to my refusal to use the opportunity to educate the woman/complete stranger. I was lambasted and told I had a “DUTY” (yes in all caps) to educate people. How was the world to know about Dysautonomia if I refused to educate people. I'll admit I did not respond well to what became an increasingly aggressive and judgemental level of chastisement. I could have been more diplomatic. I could have taken the time to educate her about her ALL CAPS attitude, but I really couldn't be bothered. I was not about to defend my right to be human. And I was not about to try and justify my position by listing off all the work I had done or continued to do. But it did highlight the pressure to be ON (that's for you ALL CAPS lady) 24/7 that many patient advocates* and patients in general face.

Everyday we hear negative comments and deal with ignorant assumptions about illness and disability. We hear it from society, in the media, from friends, family and even doctors. And we all become educators by default. It can feel like you are stuck in an exhausting Groundhog Day at times.

Recently, Jenni Prokopy aka Chronic Babe wrote in a post about haters and advocacy that sometimes it's okay to just wish them a nice day and walk away:

"Some activists will argue with me, saying we should educate haters in order to build a stronger community.

There’s some validity to that, for sure. If I didn’t agree, I wouldn’t have kept ChronicBabe.com going for 10 years—and I certainly wouldn’t do so much advocacy work. But just because we’re sick, and just because we choose to strive beyond the limitations of our illnesses, doesn’t mean we owe the world an education."

We don't owe the world an education.

Oh how I love that.

When I became ill back in 2006 the lack of awareness about any form of Dysautonomia was a huge impediment to finding a specialist and finding a diagnosis. When I tried to explain to others what was wrong, even those who I worked with in health, I was met with a lot of blank stares. With education having been a large part of my then job description, education, awareness raising and advocacy was a logical move as I became a full time patient. I have now spent years doing just that. Not only for Dysautonomia, but invisible and chronic illness and disability in general. I enjoy it and it is a passion.

But what I did not realise was that in becoming ill I was also assigned a secondary job complete with Key Performance Indicators (KPIs) and people would happily and at times aggressively, point out when I didn't meet those KPIs. It was clear I was expected to be ON at all times. And that my workload, as decreed by others, was increasing exponentially.

The problem with being ON 24/7, and I'll admit I did internalise that philosophy and often beat myself up for not meeting expectations, is that I am also a human being. A chronically ill human being.

I can be surly and a dick at times. I can be tired and over it. I can be sarcastic and mouthy. I can be stubborn and have a low threshold for shit. When you add living with a chronic illness that leaves you ill or really ill 24/7, these less flattering aspects of my personality can rise to the top as my tolerance and energy levels plummet.

Sometimes I want to have a life outside of illness. It's vital for maintaining sanity. Sometimes I want to binge watch Supernatural or The Walking Dead. Sometimes I want to potter in my garden. Or fart around the house and eat way too much chocolate. Sometimes I let opportunities to educate slip by. Because sometimes, like that day a few years ago, I just want to buy some basic groceries and keep the contents on my stomach in my stomach, without having to explain why I am using a walking stick.

Some days when someone makes a crap comment about disability or my still being sick or asks intrusively about my mobility aid I want to simply turn around and say,

“You are being a dick. Stop being a dick.”

If I have taken the time and effort to address the last 48 instances of ignorance I've experienced, is it okay if I let the 49th educative opportunity slide? The answer is, yes. Some people don't want to be educated. You can give 110% and still the person wont have heard a word you said. Sometimes you have to pick your battles and conserve your precious energy. And sometimes I just want to reply in a totally human way.

I don't owe the world an education.

No patient or patient advocate owes the world an education. The vast majority of patient advocates work out of love and passion, and receive little to no (much much higher on the no side of the ledger) remuneration for their time. The patient advocacy network is sustained by a large group of volunteer professionals. I say professionals due to the sheer amount of expertise in the network developed through time, hard work and love. But they are also a profession of people who are frequently managing their own significant illness while advocating for others.

I don't know a single patient advocate who begrudges the time and precious energy they spend educating or supporting others. But I also know how many are making themselves sick in the process. I know how many end up with serious flares and hospitalisations. I know how much goes on behind the scenes as self-care is ignored or the severity of illness hidden while they continue the advocacy work they love.

I also know that in paid employment workers are entitled to days off and leave. I don't know why we struggle to recognise that for the largely volunteer network of advocates we are just as entitled to a break and down time. Time just to be a person. Although in saying that I know from personal experience patient advocates all have one thing in common; a pressing and often overwhelming need to fix many of the problems encountered, yesterday. When in truth and in our impatient logical selves, we know the institutional and community issues we face will take years and a huge combined effort to change.

When I read Jenni's post I couldn't help but think of that exchange on Facebook. Not that it is the only one I've had over the years, but it was the first one where the level of vehemence made me sit back and go “Whoa.” Quickly followed by “Bite me.”

I say this knowing there are people who chose to live and breathe advocacy and education 24/7. As Jenni points out there would be others who would disagree with her own stance on the issue of owed education. And that's okay. If it works for them I say more power to them. But what it comes down to is that it is a choice that each of us must make. And there must be a recognition of the cost of that dedication, and that in the end, that we are all just human beings doing the best we can.

Sometimes it's okay not to be ON.

Sometimes it's okay to not analyse and understand every person's motivation in making a comment.

Sometimes it's okay to expect others to take responsibility for their own behaviour.

Sometimes it's okay to just call someone out on their dick behaviour rather than educating.

Sometimes it's okay to just be a person.

And it's always okay to take time to take care of you.

Michelle

*I have used the term patient advocate throughout this post, but it could have easily been disability advocate. I am aware that different people identify differently and I fluctuate between both when identifying myself as I don't see them as truly separate. I did have them as an and or, but it just became messy.

Big love to all the advocates who dedicate themselves to helping others. 

Monday, 15 June 2015

Blogging, you're doing it wrong!


The Internet is filled with helpful posts with titles like "How to blog", "28 tips for running a successful blog", "If you don't follow my rules your blog will die in the fiery pits of hell and your lap top will spontaneously combust in disgust at your woeful blogging, which is an abomination in the eyes of God", or something similar.

When I first began blogging I would read these posts and cringe at my lack of blogging skills. I was doing 90% of the things in these lists wrong, or was totally unaware that certain rules existed. I would stew over them, wondering how to best apply them to my fledgling words. My Type A personality was determined to get this blogging malarky right.

And now?

Almost six years after I first pushed publish I realised I wasn't following any of the stock standard rules and I'd stopped reading those posts.

You see blogging with and about chronic illness doesn't always fit into the rules. Talking to fellow chronically ill bloggers it became clear that for many of us the rules don't work, particularly if your symptoms are unpredictable or quite severe. We are constrained by things like fatigue, pain, brain fog and that pesky problem of trying not to puke up on your keyboard (it's a pain in the arse to try and get half digested chunks out from between the keys). Our blogs are also inherently personal and therefore incredibly unique.

For many of us it is not a question of not wanting to write or not having anything to write about. Instead it is the physical constraints of our bodies that hamper our efforts. And let me tell you, there is nothing more frustrating than being foiled by the chronic illness about which you are trying to raise awareness.I even made it to a blogging conference this year, only to miss half of it as I was busy concentrating on not passing out or vomiting on my note pad.

For me writing about Dysautonomia and my various other dodgy body parts is not about providing a medical resource. I don't offer medical advice or doctor recommendations. I offer no services and have no skills to teach. I didn't set out to raise awareness, although that has developed organically.

All I have to offer my readers is my story.

99% of the posts on my blog are simply snippets about my life with chronic illness. Nothing more and nothing less. Every now and then I get a bit mouthy about certain issues pertaining to disability or chronic illness. But mostly it's just me rabbiting on about the things I experience and the thoughts that rattle around in my head. If a lesson is learnt or a process explained it is more luck than planning.

I understand that for many the rules work. Just not for me. And accepting that I just want to write, rather concentrate on branding, or strategies, has kept blogging a pleasure rather than a chore.

I can also accept that I am going to fail at many of the blogging basics.

I don't plan my posts and I have no schedule.

I learnt long ago that scheduling when living with an unpredictable chronic illness, is a lesson in frustration. It simply set me up for failure. Instead I post when it feels right. That could be once a week or three times a week. Being a personal blog that works. Forcing a post shows. If I'm scratching my head for a topic to write about, I know it's time to step away from the keyboard. I tried back in the beginning to create a schedule and stick to it. This ended up with me spending hours staring at the keyboard waiting for inspiration. In the meantime you could hear crickets in my dull and empty head and I was using up my limited energy reserves on a useless endeavour. I can plan to post every Tuesday at 11am. Problem is that at 10am on Tuesday I may be bent over the loo praying for death, or passed out on the tiles surrounded by an accumulation of dust bunnies and short and curlies, courtesy of my lack luster house keeping. Scheduling is not my friend.

I am a grammar and spelling loser. 

Once upon a time I was known for my writing skills. Lecturers and co-workers would always remark on my literary prowess. Now I am reduced to working with one brain cell named Eunice, and poor old Eunice is overworked. My token response to questions of grammar and spelling are to do a quick check on all the words that have a squiggly red line underneath, and trying not end a sentence with a preposition. My initial drafts are 90% red as I have problems coordinating my fingers and I tend to substitute words even though my brain tells me that I am typing the right word. Add in fatigue and a decided lack of O2 to the lack lustre grey blob that resides in my skull and my final post is often a grammatical abomination. And I'm okay with that. It is often only when the humourless bastions of grammatical purity point out my mistakes that I even notice they exist. However, short of a mistake such as forgetting a vitally important letter in 'count' (been there, done that), I don't tend to go back and re-edit a published post. My writing will never be perfect, and I kinda like that. I simply don't have the cognitive skills required any more and I'm not going to head out back for some self-flagellation because someone pointed out that I put a comma where I should have put a semicolon.

I swear.

Not a lot, but I do. The first post I wrote had the F word three times in the first sentence. My last post ended with calling certain people "an arsehole". If you don't like it, don't read it. But I'm not going to sanitise my experience. Sometimes a good swear is what you need. Sometimes a choice, well-placed expletive gives the emphasis needed. Being chronically ill is frustrating. Dealing with ignorance is frustrating. Dealing with the medical system is frustrating. And the vast majority of my readers understand and relate to that frustration. I have no intention of censoring my writing so in all likelihood my future work will be peppered with expletives if it is appropriate to my topic.

I am big on TMI.

My bowels have featured heavily on this blog because their dysfunction has been a large part of the last 8 years. My dysfunctional bowels have landed me in hospital, I have been scoped more times than I can count and had the indignity of being given an enema by an overly chatty nurse. I share my experiences, because it demystifies and normalises them for others in the same position. Illness is scary because it is unknown. Every time I talk about poo I am inundated with emails thanking me for discussing such a sensitive topic. Fear lives because shame keeps us from sharing. So poo and various poo-related jokes will continue to be part of this blog.

I'm not big on the phenomenon of Illness Inspiration.

Everywhere you turn it's all rainbow-farting unicorns and sparkle covered epiphanies. Roll models for perfect patients abound. They are trotted out regularly on day time TV with big hair and Julia Robert's type smiles so that the hosts and viewing public can bask in their inspirational goodness. That's not reality and leaves the rest us patients feeling like we are doing illness wrong. Well pfft to that! I write about the crap times as much as the good times. I have a laugh where I can and am a big fan of glitter, but I am not here to offer up epiphanies and inspiration on a daily basis. Sometimes I am a whingy, whiney, and sour individual and I'll write about that just as much as I'll write about the times I am happy. Perky has never been part of my make up. Sarcasm on the otherhand is my go-to response to most aspect of life.

I don't have clue about SEO or HTML.

I have Google Analytics but tend to only look at the words people used to find my blog ("Don Johnson smells cat wee" is still my favourite) and where people come from (Hi regular reader from Uzbekistan). My technical knowledge is non-existent. I have more chance of solving the Reimann's Hypothesis than working out how to create a blog button. Learning is hard when Eunice is just trying to keep me upright and breathing. I keep thinking I should move my blog and make it look more professional, but the idea of trying to do it myself and a complete lack of funds (if only dust bunnies could be used as currency) means apathy wins out. Plus every time someone looks down on Blogger it makes me dig my heels in further. I can pay out on my blog platform and complain about it's faults, but if you start bad mouthing my platform I'll take you out at the knees.

I am shite at self-promotion.

Networking is exhausting and I always feel like the odd blogger out. I don't feel comfortable about entering blogging competitions and cringe at asking for votes. I never feel confident enough to share my posts widely. (I may need some therapy to get over that) But above all I don't have the energy. By the time I've published a post I am ready for a nanna nap. The idea of sharing and promoting it is pushed aside by the simple need to breathe and wipe the drool from my droopy mouth. It goes in the too hard basket. Self-promotion or pain meds and coma sleep to recover from the writing induced migraine? The latter always wins. I also have the organisational skills of a meth-addled lemur. I did get all proactive at one point and write myself a list of sites where I could share my posts. And then I promptly lost the list because I have a memory like a sieve. I regularly forget to take my meds, which live in a dosette box next to my bed, and are situated where they are the very first thing I see in the morning. So trying to organise promotion for my blog or particular posts is a pipe dream.

Blog statistics bore me senseless.

I know I should know them. I know they are important. But I just can't work up any interest in them. After 7yrs of statistics and research methods when I was doing my undergraduate and post-graduate degrees, I am statisticed out. Watch Judge Judy or check out my page views? Hmmm I would rather watch old Judes rip the dodgy check-cashing, half-wits a new one. Or I could do another Portlandia marathon, or re-watch Season 1 of The Walking Dead, yet again. Or nap. I don't have an Elevator Pitch and have no idea what my Brand is. The fact that people on the other side of the world there are people who call their version of Dysautonomia, Bob is far more exciting and satisfying than my Bounce Rate or Page Views. And everytime I recieve an email to say that I made a difference in someones life, it gives meaning and value to every hard fought word.

My body will continue to get in the way of blogging. I will post about the wrong things, in the wrong style, at the wrong time, and be completely incompetent on all technical aspects of blogging.

So I'm giving myself a break.

Blogging, I'm doing it all wrong. And I'm loving it.

Michelle :)

)

Friday, 12 June 2015

Reinventing my Routine: Finding What Feels Good doing Yoga with Adriene.


Earlier this year I was featured for the Digital Writers Festival as part of a collaboration with the lovely Madeleine Dore from  Extraordinary Routines. I discussed my day and shared photos of my writing routine. My routine had elements that I tended to use every day but I had no real timeline for how my day would play out.

Living with an unpredictable chronic illness like Dysautonomia, plans and strict routines can be more depressing than helpful. Each time I failed to meet a deadline or complete a To Do list (or lost my To Do list!) I beat myself up. A trait I learnt back in the cradle. I wasn't giving myself any compassion or understanding and stupidly ignoring the physical impediments that were frequently out of my control. In writing out my day I realised how fluid my routine had become. Apart from taking medication and my morning shot of caffeine there was little structure.

This year I have found it hard to find a break in symptom flares. If it's not Dysautonomia it's a migraine, or a flare in my gastric pain, or a bowel that stops working, or my heart throwing up new problems, or....the list has been never ending. And with that I have lost most of even my tenuous routine. Recently I realised the lack of routine was starting to affect me negatively.

When Madeleine recently asked the question,


A photo posted by Extraordinary Routines (@extraordinary_routines) on

yoga and mindfulness (which I'll discuss in another post) were two aspects that came immediately to mind.

Now admittedly my neuromuscular weakness, disc problems, and autonomic issues make activities like yoga difficult. I can't stand for long, or frequently short, periods and holding certain poses ends with my weak muscles shaking and giving way. Not to mention exercise intolerance. But I know from experience even simple yoga stretches make me feel lighter and in turn calmer.

Earlier this year I was alerted to a 30 Day yoga program run by a yoga teacher from Austin, Texas.  30 Days of yoga with Adriene, made me realise how much I missed the practice. What I liked most was Adriene herself. She is relatable and easy going. Her motto of Find What Feels Good resonated. This wasn't a program where I felt like a loser when I couldn't do the poses or finish a full day. I didn't feel bad when I skipped a day or two as my body played up. And I did A LOT of child's pose when I was unable to keep going or needed a break. But at the end of each session I felt like I had achieved something.

And then I stopped.

Life, or more my body, became complicated yet again and I didn't keep going.

I had subscribed to Yoga with Adriene on Facebook but just flipped past the posts as I fell into a familiar, comfortable, apathetic, life sucks, pouting, mode. Then about the time Madeleine asked the question, a link to Adriene's video for Bedtime Yoga* popped into my feed.


 
At a time when stress and insomnia were taking turns to give me atomic wedgies, it stood out. So I clicked on the link and fumbled my way through the sequence.

And I enjoyed it.

I didn't sleep better, but tension was lessoned. And I finished the whole sequence. A small achievement for sure, but it's surprising how good that can feel. So I did it the next night. And the next. And the next. I may not have been sleeping but I was more relaxed. Given that my insomnia is a creature of years I don't expect that it will disappear after a couple of weeks of yoga, but I am enjoying the process.

The sequence is easy and as ever Adriene is encouraging and relaxed. Find What Feels Good resonates throughout. Plus she makes a joke about her "rack" and that made me laugh. A yoga teacher that is not only relatable, not cracking the whip because you don't find your inner light or do a move perfectly, and makes a boob joke? That suits me to a T.

(Must get one of these)

Recently I decided to incorporate her Morning Yoga sequence into my routine.



Similar to the Bedtime routine it is easy and slow. I have tried other morning routines in the past and they were so quick and energetic with little time between moves. And filled with jargon. And I quickly gave up. On the bad mornings (well really it's more a brunch yoga than morning yoga, for me) I only do the lying down movements and only the bits I can, but at least it's movement and I can even do that in bed.

Plus all of it is free on Youtube. And free is a priority for those of us who pretty much need to sell a kidney just to pay for our continual medical needs. Given I can no longer drive, it also takes out the need to organise lifts to yoga studios, yet another bonus.

My routine has expanded and is now bookended by these two videos. I lie here on my yoga mat in my lounge room in country Australia and follow videos from Austin, Texas. And feel lighter.

Now if only I could stop Freyja from coming to check on me when I am lying on the floor with my eyes closed. An unexpected face full of Great Dane breath or a forehead lick does break through the relaxation aspect a bit.

I'm working on other parts of my daily routine. The balance between structure and flexibility can be hard one. Especially when you are living with complex chronic illness. But factoring in a bit of self care during the day is worth it. Even if I forgot for a while.

Michelle

*As always, before beginning any exercise program you should check with your doctor that you're okay to start. And not everyone will be able to do even these easy yoga poses. And that's okay. Mix it up. Do what you can. Don't force it. As Adriene says Find What Feels Good.

Sing it Nina, Feeling Good. This is one of my favourite pick me up, belt it out songs. My scatting needs a lot of work but I always feel like I can kick some serious arse after singing along.

Feeling Good, Nina Simone by mrfnk

Wednesday, 10 June 2015

Once Upon a Time, in a Land Far Far Away, There was a Girl who still Believed in Restorative Sleep.



Restorative sleep. Yeah. Sure. I had it once. Maybe. Back when Shakira's hips didn't lie. Back when Dexter was putting up his first piece of plastic sheeting. Back when standing in line at the post office wasn't a death defying act.

Slowly open my eyes in the darkened bedroom and the oppressive weight of my body falls. Coma sleep, followed by feeling completely trashed. Three days of migraine, meds and darkness equals an unavoidable deep sleep as exhaustion finally claims it's due. No restoration. Just the emergency breaker in my body's fuse box. A flick of the switch as muscle, bone and viscera are overloaded once more.

Joints protest and muscle screams. Post-flare sleeps are motionless. Motionless equals pain. From hips to back to....

Slow movements. Sharp intake of breath. No choice but to move. Like the inevitable ripping off of a bandaid, joints must bend and rotate. A full bladder doesn't allow for denial and avoidance. Get it over quickly. Well as quickly as my slackened limbs will move. The two for one special. Weakness born of immobility, drags out the pain. Slow. Slower. Snail's pace.

Upright. Breathe. Wait while the screaming visceral reaction to sitting up passes. Rub my feet on the mat. Bright pieces of sari bound and stitched to make a rag rug. An impulse buy on one of my rare outings. An eye roll from Mr Grumpy, but resignation that the rainbow colours and the Come in Michelle, sale sign, already had me planning its placement in our house. The texture under my feet is soothing. Rough enough that the spotty sensation of my soles can feel it roll and compress. Breathe and roll. Rub and breath. Push and squish. And breath. Just breathe.

Weary and maudlin. Repeat the process to stand.

Boy and Bear fills the air as the shower starts

Whoa, and I've been through Your garden
And I've been to Your grave
Lordy may
When I come to my end some day
Will I find myself sitting at some golden gate
Or will it all just float away
Yeah, my end some day

The melody fills in the aching cavern of my skull. Mumble and slur. A word here a word there. A syllable maybe mixed with a half-hearted hum.

garden….float away....someday.

The blast of the shower muffles all.

Slough it off. Slough it all off. Three days of pain and sweat. Rancid, to float down the drain.

Sitting on the floor of the shower is the safe option. Even the chair not worth the risk. Sit on the tiles and let the water fall. Watch it bounce and shatter where it hits pale skin and ceramic floor. Different sound on different texture. Turn my wrist and watch the change of the flow. The rivers of hot water pouring. First this way then that. Minute ripples of muscle and tendon that flex under the skin move the the water sharply left and right. Course altered courtesy of the smallest movement. Or shudder. Or convulse.

Trace the song words on the glass. Rest my head on my knees. The song of the water changes as wet hair covers ears. Wisps of oats and soap rise from warm skin. Wash it off. Wash it all off, to just float away.

Time passes in the white noise of the shower. Songs pass as thought is replaced wholly by the sensation of water on skin. Focus on the water. To the exclusion of all. Stir. Unfold just enough to turn of the water and pour my body onto the bath mat. Cleansed. The sour smell of pain and pharmaceuticals gone. Soft cold breezes rise from the tiles. Sharpening dulled brain and body.


No restoration. But a MacGyvering.

A piece of gaffer tape. A wad of chewing gum and a paper clip. Clean skin and soft clothes. To patch me up enough to function. To hold the pieces together. The funk of illness finally removed allowing me to pretend for a while.

The pain, the nausea, the ugh,
                                                     all dulled.

Open the door. Squint against the sharp morning light. The familiar buzz of the coffee machine. Breath in the caffeine as it pours. Fill the lungs. Let the mug warm my hands. A grey furred head rests on my hip. A green blanket and velvet pillows piled high, await on the couch. Silence and soft song.

This is how restoration finally begins.

Michelle

Wednesday, 20 May 2015

Getting through


Just get through it.

That's what I thought on Wednesday. And what I thought last week. And yesterday. And likely next week. Just get through it. Expect the payback. The recovery. The preparation for the next step. The next event. The next appointment. Get through that. Then payback, then....

I'm stuck in the loop.

The calm time. The inbetween time. The time where I can just sit and breathe. The time where I can process things. Or fart around doing nothing. Or everything. Doing something I want. Without worry that it'll be too much and I wont be recovered and prepared enough for the next event. That time is missing.

Chronic illness is a fine balancing act. And I'm fumbling.

My recovery time is longer. My preparations often interrupted by flares of symptoms that seemingly have no rhyme or reason.

A few of my doctors have mentioned that I have the crappy honour of becoming a complex chronic patient where my body is so off kilter it just keeps throwing things in for kicks. Those kicks aren't huge but enough to make life that little bit harder. That drain just a little bit more of my already reduced energy. The pain that radiates from my pacemaker pocket and wakes me, stabbing into my chest and down into my breast one of the latest. A rare complication. More common in women but rare all the same. Like my surel nerve biopsy, the nerves that were cut so my heart could keep beating, howl their displeasure and rage against my body. Something else to put in the "live with it" pile. Pain everlasting, poorly managed, ever increasing, and ever exhausting.

The concern face as my heart throws up a new problem. An unexpected problem. More tests. More fiddling. More uncertainty.

And so the breathing space that was once there between events and flares is merging. My resources fewer. My prioritising even more ruthless. There are things that must be done and the rest doesn't even get consideration.

The emails pile up, just like the messages.

Phone calls not returned.

Appointments are scrutinised and prioritised.

Which body part is most in need of tending?

Which appointment will give me the most bang for my buck?

And outside that, life.

Children, husbands, families and households.

The needs that cannot be abdicated. The needs that trump my own. The needs that I am also fumbling.

In the midst of it all an appointment that is easy. So easy it doesn't register until after. When I'm sitting in the car and realise that it was both fruitful and pleasant. There was no antagonism. No fight to get what I needed. I sat with a collection of referrals, for specialists and tests. Break through meds, and understanding. I was too busy getting through, so used to expecting a fight, that I fail to register the gift that is a doctor who gets it.

I sometimes wonder what it must be like for a doctor to be landed a patient like me. Complex and weird. Only there when the going gets bad. Only there when the problem is a mess. So busy getting through it that I wait too long. So busy getting through it, so used to expecting to beg and argue, I didn't give her the thanks she deserved.

I need to focus again. To not just get through. To move beyond ruthless existence. I think I might use up some of my precious resources for a quick note of thanks. A few words to say thank you, I noticed, it meant something. It was an easy spot in the midst of hard.

And then I'll start prioritising again. Shave off this need, cut off that. Distill it all and keep saying No, until it all becomes manageable again.

Because it will. It always does. And I'll rejoice once more in the breath-filled moments.

Michelle

I've been listening to a lot of Sara Watkins of late and this song in particular. Short and simple with perfect lyrics. (I've written about it before here  when I needed a reminder that I always drag myself back.)


Wednesday, 13 May 2015

Independence, wherefore art thou?



Today someone is coming to the house.

To take me out.

A stranger.

A stranger is coming to take me out.

For an outing.

An outing.

I don't know what I think about it.

Well I do.

I also wonder how many expletives it takes to be kicked off Google? I think I could do it.

It feels like someone is reaching deep down into all that is me, and ripping it to shreds. Big chunks of my being, pulled out to rest in bloody hands.  A tad melodramatic I know. But it does.



I'm not comfortable with any part of it. I feel my stomach churning as I type. I can hear the "But Michelles...." already. And honestly, the "But Michelle...." folk can stick it. Two days ago I turned 42 and today someone is coming to take me on an outing.

Because I can't go out alone.

Because I am reliant on others to leave my house.

Because it's just another marker for the level of shit my body is immersed in.

Because I'm angry and shitty and tired.

Because.


I can go anywhere I like. The local shopping center keeps being brought up. Because heading to Target with a stranger is up there with internal exams, on the fun scale.

And small talk. Small talk with a stranger. Might as well break out the speculum.

I want to go to the gallery. I don't want to talk. I don't want to interact. I want to look at art at my own pace.

I want to not go arse up with a stranger and have to deal with the crap that goes with it.

I want to go and not have to explain why I'm in the chair.

I want to pretend that I'm there alone. I want to pretend I am still independent.

But a stranger is coming to take me out on an outing, because I can't do it alone.

And I am reminded

                                just how fucked my body is.

Michelle