Wednesday, 19 October 2016

Dysautonomia Awareness Month 2016 Guest Posts: Patti Feeling Lucky. Dysautonomia over 50.

I really love this guest post from Patti for Dysautonomia Awareness Month 2016. Patti discusses her experience receiving a hyperadrenergic Postural Orthostatic Tachycardia Syndrome (hyperPOTS) in her early 50's. We don't often hear of the experience of older patients so it's lovely to be able to share her story. I particularly love the compassion she has for other patients and the way she has reframed her experience in such a positive light. Thank you for sharing your story, Patti.

Patti is a fifty-four year old woman who developed hyperadregenic POTS at the age of fifty-two. She is now housebound and reads, reads, reads. Prior to that she was a map librarian for several years. She then completed a PhD and was a lecturer in Geography. She has always been a mad keen gardener. She lives with her amazing husband and dogs in Wisconsin, USA. She's a lucky woman.


I feel lucky to have developed full blown POTS at the age of 52. Not that it doesn't suck becoming disabled by something you never heard of before, no matter your age.

I am lucky in that my primary care physician knew me and took me seriously from the beginning. Like many, I developed POTS after a viral illness. Mind-numbing fatigue was the symptom that occupied my mind early on. Being over fifty made him believe me but also never lead him to a diagnosis of a disorder that usually strikes young women or the later diagnosis of pre-lupus.

I am lucky that I was diagnosed in six months. I thought I had Chronic Fatigue Syndrome and read a book that indicated it was an autonomic nervous sytem dysfunction. I found a local neurologist who specializes in ANS disorders and booked an appointment. I was in the room with her for five minutes and she knew what was wrong with me! Some crazy term I couldn't pronounce. I was thrilled, well as thrilled as you can be in a hyperadregenic state. I assumed that there would be a magic pill and I would get my life back! Two years on I am still seeking that magic pill. Aren't we all?

I feel lucky to not have developed this condition as a teenager, young adult or child. I realize I have had symptoms all my life but they were subtle. Who knew my party tricks were really Ehlers-Danlos?  
I am lucky no one thought I was suffering anxiety or panic attacks. I carried the over fifty card where Drs tend to believe you. I can't imagine how difficult it is on younger people merely trying to maintain verticality and then be told it's all in their head.

I am lucky to have developed this after having worked since the age of 14. I have a long, strong work record which allows me to receive a disability check every month. I feel extremely lucky to have Drs who documented everything so that I became eligible for disability on the first application.

I am lucky to have a good Dr and fabulous Nurse Practitioner that care and take time with me.

I am lucky to have traveled most places in the world I wanted to see.

I feel lucky that I live the internet age where research is possible and others with this condition can bond.

I feel lucky this disorder is teaching me patience, something I have always lacked.

I am lucky I have good insurance and am comfortable financially.

I am beyond lucky to have an amazing, supportive husband who retired to take care of me and caring family and friends.

I still can't be vertical for more than 10 minutes but I am so much better off than so many and I am extremely lucky for that. With age comes wisdom?


Friday, 14 October 2016

Dysautonomia Awareness Month 2016 Guest Posts. Alexandria: When Weight Can Become an Impediment to Diagnosis.

Today's guest post for Dysautonomia Awareness Month 2016, is fellow Australian, Alexandria. Read about her experiences trying find a diagnosis as an overweight patient and living in a rural area and send her some love. Alexandria is definitely not alone in this issue and I hear of many patients who find themselves in the same situation. It really is an issue that needs to be spoken about and addressed. Thank you Alexandria for sharing your story.

My name is Alexandria. I am 25 and from regional Victoria, Australia. I was diagnosed with Inappropriate Sinus Tachycardia in April 2016 after suffering debilitating symptoms for the year previous. I cannot work currently, so I spend my time running a baby name website, which is a huge interest of mine, and keeps me occupied. I love spending time with my family and partner, as well as being kept company by my old dog and kitten. My hopes for the future are to find ways to spread awareness and hope for invisible illnesses.
Finding a diagnosis for an invisible illness can be a tough journey. We each face the struggle of finding people to believe what we’re feeling, investigate those symptoms, and refer us on to specialists. This is especially hard when you’re not considered a standard patient for the type of disorder.
Within the dysautonomia community, it’s very common for people to be of an average or slightly-below average weight. But for me, I started this journey overweight. Unfortunately, there’s a lot of bias towards obese people within the medical field, and I often found that my problems would be pinned on my weight without any questions or investigation. Discussions of seeing a blood pressure specialist due to suspicions of a low blood pressure disorder were completely off the table, with one doctor even diagnosing me as having high blood pressure without putting a cuff to my arm.
Of course, being in a rural town did not help this journey either. In a city, you have choices. If your doctor isn’t any good, there’s hundreds more around you – there are even GPs that specialise in certain areas. However, in a small country town, you are very limited; once you’ve crossed one doctor off your list, you’ve eliminated 33% of your medical options.
When I did finally get a referral to a specialist, I was very nervous that I was going to hear that it’s my weight again; that my efforts to lose it aren’t enough, and there’s nothing wrong with me apart from the fat on my body. I was so relieved when this specialist finally looked at me, and saw me as a whole person. They listened, took into account my symptoms, and ran all the tests that were required. That week, I finally got my answer: I had Inappropriate Sinus Tachycardia, a form of dysautonomia.
Although the trips to the city from my country town are long and draining, and the cost of travel and food is high, I did not regret seeing someone who would give me a chance, and see that not everyone fits the standard model of a dysautonomia patient.
I feel that it’s so important that doctors keep in mind that weight should not be the sole focus. Excess fat can certainly create a multitude of health issues, but there are also a multitude of health issues that exist that aren’t related to weight. By focusing on weight alone, my past doctors took away years of time that I could have been in treatment. Having a doctor that could see that made all the difference in my life, my treatment and even the way I saw myself. It made me feel like my symptoms were valid, and that I had a place within the dysautonomia community. I encourage all doctors to view patients as a whole, and take the time to investigate symptoms, so we can find our answers and learn to live our lives. 


Thursday, 13 October 2016

Revolving Doors

[Image: a gorgeous wood and brass revolving door at the Savoy hotel. Source]

Tuesday I sat in my neurologist's waiting room. It was full to overflowing as she was running overtime. It's not uncommon. All it takes is one late patient or unexpected emergency for the program to blow out. I can count on less than one hand the number of times in the past nearly eight years I've been seeing her, where she's hurried me out her door. But the cumulative effect of this tendency to take her time, on top of those other factors, also stretches that list out further and further.

Fellow patients came and went. Heading off for a belated lunch or restorative coffee. I commiserated with the petite elderly woman across from me about the delay. We commiserated again when she came back from her impromptu lunch to find me still sitting there. Surprisingly most people were happy to go with the flow. Momentary frustration replaced by resignation. Getting in on time to see any doctor is rare. There's an urban legend that some guy living in Preston once managed to have an on time appointment at some medical clinic somewhere. No one really believes the myth, but we all have a little kernel in hope that maybe, just maybe, it was true, and in turn that it could also happen to us.

When my name is called she talks about how much she loves my new hair and clothes. We've always bonded over a love of fashion. I wheel down to her room, my driving skills hampered by exhaustion and building hypotension.

"How are you going?"

How to sum up the shitfight that has been my life since I last saw her? It's never easy. Physically and cognitively things have gone down hill, though it is the later that concerns me. Where to begin? I start listing the physical issues. Even I know how disorganised my communications are, fatigue having amplified my cognitive fog. Part of it is also my worry. The worry that I've voiced on occasion before hastily stuffing it back down, binding it's limbs, shoving it into a box, welding the box shut, before tying bricks to the outside and tossing it over the side of a ship somewhere over the Mariana Trench (I am nothing if not thorough in my denial).

While my physical issues are problematic, apart from the odd exacerbation, I can deal with them. I've come to accept that they are simply part of life and while they can be difficult to deal with at times, after ten years I'm made my peace with them (I fully reserve the right to bitch and moan about them in the future. I'm not fool enough to believe that acceptance is reached, and all is fine and dandy in the world from that point on. Life doesn't work that way.) But my cognitive issues aren't improving. Things are better than they were the first half of the year but they are still no where near where they should be and the term brainfog underplays what I've been experiencing.

When I start describing the heartache of finding writing and reading difficult she instantly recognises the importance of the issue. Over the years of our relationship we've frequently discussed my writing. She's been excited when I've presented at a festival or had a piece published and always added that I am a blogger or writer to my letters. She understands that not only is this important to me, it is indicative of a significant problem. My language skills have always been my strength. And their deterioration a sign she can't ignore.

Back in June I wrote of my worry that I was forgetting important things. Turns out I was. Emails came in querying where I was and why I hadn't completed certain tasks. The embarrassment combined with a realisation that my fears were founded. I was not just forgetting the little things I was forgetting the big thing. The things that were important to me. I have since sent off many a mea culpa email, apologising, and where appropriate, trying to explain what had been happening. But it is the ones that related to my writing that have hit me hardest. That I could forget things so dear to my heart is worrying. The fear that I still have a collection of important events or issues that have escaped my mind is ever present. It would seem I was going through the motions but nothing was sticking. Even when I have interacted, somewhere between event and storage, the information simply evaporated.

Memory, language, attention, speed of processing,...I list off my concerns. My understanding that one may underpin another, or be working together to create the impairment.

"It may be useful to have a Neurorpsychological assessment."


A kick to the guts.

Not that I haven't thought about having an assessment. I have. On multiple occasions. Especially following my SPECT results, and more so the last six months. But telling a former a Neurospychologist that they may need a neuropsychological assessment is confronting. Mr Grumpy knew about my hesitation. I've discussed my fears with him on more than one occasion. He pipes up to fill in the blanks where my mind dissipates, as I face the realisation that it's not just me who thinks I need to be assessed. That the expert in the room agrees. I start to recite the problematic issues involved in assessing someone who was previously the assessor. The community is small. And I don't want to be assessed by someone I know. I know the process and the assessments used.

"I still know all the tests. I can still recite the memory stories and draw the RAVLT!"

Why that phrase stuck in my head I don't know. Maybe because a small part of me registered the mistake.

It wasn't until I was sitting on my loo 24 hours later, that I realised that you can't draw a RAVLT, a list of words. You can, however, draw a Rey Figure, which is what I had in my head, and I can still draw.

Word substitution. Crap. Just a small example, but when these tests have been your bread and butter and you've conducted them more times than you can count it is confronting. Somewhere between mind and mouth or mind and keyboard, things get lost. Going back the other way is not much easier these days. Attention, divided attention, memory it's all screwy. And the concentration and effort that is required to try and present a good front is frequently exhausting.


(The Walking Dead Season 5 spoiler alert two paragraphs ahead.)

There was research that came out around 2011 that suggested that doorways were essentially memory scrubbers. A kind of purging of unnecessary information as we move from place to place. It's thought to be responsible for that common feeling when you walk into a room and then stand there having already forgotten what you were supposed to be doing. I feel that every day. Though I often feel like I am stuck in a revolving doorway rather than simply passing from one room to another.

There's a pivotal scene in The Walking Dead where three characters get stuck in a revolving doorway. One fights his way out through the doorway condemning another, Noah, to be eaten alive by the zombie horde, while the third, Glen, is stuck watching in horror as this occurs on the other side of one of the glass partitions. Noah is my memories being eaten, while I'm Glen, stuck on the other side of the partition, impotent and condemned to watch my memories being ripped apart. (First guy gets his comeuppance later in the season, not sure what my real life equivalent would be. See, that's what cognitive issues give you, an unfinished metaphor, or parable, or....well my brain can sort of feel what it is but I can't quite get there.)

She mentioned a name. A Neuropsychologist she assured me was very competent. It wasn't a name I recognised, not that I can trust my memory at this point. And I acquiesced. In truth if I hadn't blurted out an impulsive "Okay!" right then and there I likely would have left the appointment with no referral sent off. I would come back in six months having progressed no further except for a few more blood tests for more rare disorders. I feel sick but resigned to the fact I will soon be siting across from someone asking me the same questions I asked the patients I saw back when I was working. I wonder if he'll find the trick to making me feel relaxed? I wonder if I'll be able to stop myself from judging him every step of the way? Poor guy. I feel sorry for him already.

I sat there while she dictated her letter. I must have looked deflated as she assured me that she's not giving up. That she knew other doctors did. That other patients are left in limbo with no support and trying to navigate their diagnostic journey alone. She assured me she had patients where it took ten or twenty years to diagnose, but she kept with it. She assured me that every time something new and weird comes up at a conference that she instantly thinks of me, and starts trying to work out if it will fit. She assured me that we know more about autonomic disorders now than five years ago. That this knowledge will only increase with time. She assured me.


We left the appointment and headed to see our son. It's one of the bonuses of the six hour round trip to the city. A neurology appointment can hardly be classed as fun. But after the fact when you're hanging out in a dodgy, smelly, laneway taking photos, it's easy to push aside what was discussed an hour or two earlier. You scull down a long black and feel it infuse your being and let the rain fall, softly dampening your clothes and hair.

And you realise that sometimes those doorways are much appreciated.

[Image: A woman with green hair (me) sits in her red electric wheelchair in a graffiti covered laneway. She is wearing a floral dress, green stockings and black high heels with a vibrant red scarf and is looking down.]


I've been listening to a lot of Etta James so Next Door to the Blues popped into my head when I started thinking about door themed songs. I saw Vika Bull in At Last the Etta James Story
earlier this year. Gosh she was amazing. If you're in Australia and it comes to your area go along. I've been a huge Etta James fan for years and equally have followed Vika (and Linda) Bull since the early 90s and it did not disappoint.

Monday, 10 October 2016

Dysautonomia Awareness Month 2016 Guest Posts. Sarah: Living with Dysautonomia in Rural Australia.

Today's guest post for Dysautonomia Awareness Month 2016, is fellow Australian Blogger, Sarah. Read about her experiences as a rural patient and send her some love. You can find more from Sarah over at her blog Reflections of a Bear.

Hi, I’m Sarah! Part girl, part bear. I’m 27, with a pacemaker, but still have to show ID to buy spray paint. I’ve been married to Mr Happy for nearly seven years *mushy sigh and starry eyes* I love crafty, creative, DIY stuff like cooking, sewing, painting, writing, sketching, woodworking and gardening. I love words (I even have a list of ones that I’m fond of). I play piano. I’m a Christian. I’m half Lebanese, half Australian (born in Australia). Oh…and I have dysautonomia (specifically NCS/NMH/VVS) among other illnesses.

I grew up (and still live) in a small country town in Australia. Beef farming is the main industry here: every year a whole week is set aside to celebrate it (with costumes, parades, markets, and lots of cows…and cow poo)! It’s a beautiful place: the scenery is gorgeous, the air is fresh and clean, op shops abound, and the CBD is just four blocks.

It’s the perfect place to live…unless you have dysautonomia, because a hub of medical facilities, this town is not.

I got sick with dysautonomia when I was 14. None of my local doctors had a clue what was going on with my body. So I spent my teens making more and more 6hr round trips to the city for tests and specialist visits.

What was that like? Well, imagine you’ve got the flu. You ache everywhere. You’re shivering. The light hurts your eyes. You’re nauseous. When you move, everything spins. Your heart thumps lamely. Your legs feel like concrete. A trip down the hallway to the toilet exhausts you.

Feel like going on a 6hr car trip? No? Tough. When you’re chronically ill, and live in a small town, you don’t have a choice.

Even with all those trips for testing and appointments, it still took six years before I was correctly diagnosed (and another year on top of that before we found someone who could start treating me). There’s a particular kind of despair reserved for when you’ve dragged your sick self 6hrs away for answers…but got none.

Living in a country town not only makes it harder to get diagnosed, it also restricts your access to treatments and therapies, sometimes even basic ones. Three weeks after pacemaker surgery, I ended up in my local ER with a tearing chest pain so strong that I could barely breathe. But there was only one doctor on duty, and he was busy performing emergency surgery on someone else. It took six hours for him to see me.

*squints and peers through screen*

I can see you shaking your head at me, saying, “Well, duh! Move to the city!”

I shake my head back at you, because it’s not that simple. When Mr Happy and I got married, we did discuss moving away. But here, in this small country town, we have wonderful family and Church family. The benefits gained by moving closer to specialists are easily outweighed by the loss of that support network. Plus, even if we wanted to live in the city (which we don’t!), there’s no way Mr Happy and I could afford to live there and pay for all the medications / testing / treatments we need.

Living with dysautonomia is hard, no matter where you live. But, in my experience, living in the country seems to add another layer of difficulty. I don’t have any solutions though. We’re happy here, surrounded by green paddocks. We’re part of a Church that really looks after each other. Our family is close by. Mr Happy loves his job. Those things matter too.


Sunday, 2 October 2016

Exotic Particles.

[Image: A photograph of a blond haired woman, the fictional Samantha Carter, played by Amanda Tapping, in the Stargate franchise, on a blue grey background. I may have watched all episodes of all three Stargate shows and movies more times that I can count. source]

I don't have Postural Orthostatic Tachycardia Syndrome (POTS). I've never met the criteria. Well except for one fleeting moment in 2011, where a neurologist turned to me after doing an autonomic tilt table test and said, "You have POTS, well POTS Plus, but not really POTS." It was there for a nanosecond. But not really. The fact that two years later I had a pacemaker stuck in my chest to make sure I stay out of perpetual bradycardia (low heart rate) and it artificially pumps me up to 100bpm when it detects activity is clear evidence that even that nanosecond of POTSie membership is a long distant memory.

I began with a diagnosis of Neurocardiogenic Syncope (NCS) in 2007, which morphed into Orthostatic Intolerance (OI), which eventually morphed into Michelle's disease as my shoulder patting, pity-faced Neurologist and long term Cardiologist now term it.

I have a form of Dysautonomia, but it's one that doesn't fit neatly into any of the present subgroup criteria and is likely, though as my Neurologist points out not necessarily, related to whatever neuromuscular mess I have going on these days. But the autonomic side of the ledger is the one that has caused, and continues to cause, the most upheaval in my life. It is the one that stopped me working and driving. The one that left me mostly housebound and way too frequently drooling on the carpet or bathroom tiles, awoken by the loving and gross face and neck licking of a worried Great Dane. From my head to my toe I have autonomic symptoms, but 10 years down the track I have no real name and just increasing complexity and decreasing clarity. I am living with He who shall not be named.

It makes for a weird midlands of diagnosis and membership.

It doesn't make my day-to-day any better.

It doesn't make for easier management.

My Autonomic Nervous System in still shot.

It doesn't make for better, easier, milder or any of the more positive ways to describe the presentation of a disorder like this.

It sucks as much as any of the subtypes, and in distinct ways that those who have a concrete diagnosis to cling too, will likely never have to deal with.

There are simply some of us who will continue to have significant autonomic symptoms, a completely dysfunctional autonomic system, a formless form of Dysautonomia, who will never fit in the available criteria. 

It is Dysautonomia Awareness Month and I know that it's highly unlikely that people like myself will be represented by any of the major organisations. Admittedly, our weird grey existence does make us hard to advocate for. We don't fit the easy awareness raising paradigms. There are forms with clear guidelines, larger memberships and great momentum making awareness less complex. But there is no quick soundbite for people like myself. And a lack of voice and presence in the awareness game, means it is easy to think we do not exist....

....and yet every day I receive emails and messages from people like myself.

Ill, and despite extensive investigations, stuck in the no mans land of the vague diagnosis, and feeling very alone.

I'm not sure how to rectify the situation. It's much easier to raise awareness for discreet illnesses.

It's much easier to link in doctors, family or friends.


the human body doesn't pay attention to consensus statements.

It doesn't pay attention to the nice neat guidelines set out for clinicians to understand, diagnose and manage.

If you'e ever watched one of the Stargate franchises, or any science fiction series, you'll have heard of exotic particles. You just know that when the plucky group of space adventurers try to find a new energy source there will no doubt be ramifications in the form of new and unpredictable exotic particles that threaten to rip the universe asunder.

That's how my body and the body of many others decides to break or malfunction. We are chock full of exotic particles. And unlike every
Stargate episode, we don't have a Samantha Carter, Rodney McKay or Nicholas Rush to make sense of things and save the day at the last minute. 

When things go wrong, like say your ANS decides to go arse up one day, and your body decides to forgo a nice neat presentation instead kicking up a heap of left of centre symptoms, it can make life, including diagnosis, extremely difficult. With no label legitimacy is missing. Prognosis is missing. Finding your support system is incredibly difficult. And the solid ground you need to plant your feet and ride things out is still just a pipe dream.

When I look around at awareness, not just this month but all year round, it often feels like people like myself are forgotten. Don't get me wrong I have no issue with raising awareness for POTS, it needs it, desperately. There continue to be misunderstandings as to its effects on quality of life, misdiagnosis abounds, and treatment is still trial and error. But these issues plague all forms of Dysautonomia. And I wonder where those with other forms, and we of the exotic particles variety, fit in the awareness scheme of things.

The reality is that there are many patients, even those diagnosed with other subtypes, who are not getting as much airtime. There is more to Dysautonomia than POTS. The problematic situation where patients feel disappointment when they are diagnosed with another form, as if somehow they have a lesser form of Dysautonomia, is symptomatic of a focus on one subtype to the exclusion of others. Or that Dysautonomia is frequently thought to be interchangeable with POTS, despite it being an umbrella term covering many formsor that no matter how many times I have written that I have a form of Dysautonomia that doesn't fit anywhere over the last seven years, people still think that means I have a form of POTS. POTS and Dysautonomia have somehow morphed into one entity, leaving many feeling as if, despite living with a form of Dysautonomia, they have no place in the discourse.

[Image: a tan umbrella with the word Dysautonmia written on it over a white background. Underneath the umbrella are a series of subtypes of Dysautonomia: POTS, OI, NMH, NCS, PAF, AAG, PanDys, MSA, FD. Infographic is from]

This is not to say that less well known forms such as Autoimmune Autonomic Gangliopathy (AAG) or other common yet less discussed form such Neurocardiogenic Syncope (NCS), don't get some attention, they do, but the predominant form continues to be POTS. Patients and doctors alike are becoming focused on this form, a trend repeatedly demonstrated in anecdotes in forums from around the world. And there is a frequent misbelief that it is more severe than other forms. In reality the more common forms of Dysautonomia such a NCS, POTS or OI, range from mild to severe, no particular form is outrightly worse than the others (NB certain rarer forms of Dysautonomia are more severe, for example Multiple System Atrophy (MSA) which is fatal) as all patients present with different levels of symptomatology, different levels of impact on their daily lives, and differing reactions to treatment. If you are fainting 20 times a day thanks to OH or NCS, and require a helmet and constant supervision, the impact on simple activities of daily living (ADLs) and quality of life is highly significant. For someone like myself who has no name beyond a vague Dysautonomia to cling to, I still continue to progress. My lack of nosology sadly not protective against further deterioration and loss of functioning.

Many patients are stuck in this weird landlessness, whereby, they are even less visible in a group of disorders that are inherently less visible and poorly diagnosed. 

I am lucky in that I have a platform on which to bang on about Dysautonomia awareness in my various social media channels. And I can bring awareness to people such as myself who are the Nigel No Friends of the Dysautonomia world. The not quite rights. Those who don't fit. The Weirdos. But I am one woman tapping away on her laptop, and I am concerned for the many who don't have the confidence to put themselves and their stories out there. Who are weighed down not only by illness but by feeling of not belonging and under-representation. The power conveyed by diagnosis of legitimacy, of guidance, and belonging, is one many patients whose symptoms don't correspond to current criteria do not have, and are unlikely to have in the near future. We cling on the edge of support groups and gather crumbs of knowledge. But seeing an official organisation embrace them, or I should say us, and our odd exotic particle spewing bodies would be extremely powerful.

I do want to say I have nothing but admiration for those running the various Dysautonomia organisations around the world. It's a tireless and frequently thankless job. Run primarily by volunteers who are often ill themselves. From my own experience I know how hard and draining it is simply managing a large FB group, which I had to step back from as my health deteriorated. I have been advocating for Dysautonomia patients in general for seven years now, through this blog, various social media channels, on TV and in interviews and as much as it is rewarding it is tough and downright exhausting at times. But I also feel a deep responsibility to speak for the large numbers of people who contact me feeling lost, confused and anchorless thanks to the pot luck way their symptoms happened to present. We are all in this together. Every patient of every subgroup even those of us floating in the ether knowing their grouping comes under the tile of Exotic Particles.

In the mean time and until we can find a Samantha Carter to understand and fix us, I will continue to advocate for those of us who don't quite fit.

After all, a quick look at the images representing the creation of exotic particles shows we are pretty spectacular and unique.

[Image: artists imagining of the creation of exotic particles at Cern in the Hadron Collider. Source]


Given how speccy the creation of exotic particles, Katy Perry's Firework seems very fitting.

Tuesday, 6 September 2016

Disabled people need a companion. Except when they don't.

"Where's your companion?"

"Is your companion outside?"

"Shall we wait for your companion?"

"Is your companion at the bar?"

"Your companion can sit here."

On Thursday I headed to Melbourne for an event as part of a local festival. I was excited. It was the first time I'd been able to bring my electric wheelchair, Lucille, to the city.

The process of getting a wheelchair did not include modifications to our car, or a carrier (which we eventually purchased secondhand) or a cover for travel (again something we purchased privately), not even ramps into the house (although that was eventually sorted through yet another fund). Finally we had both carrier and a brilliant cherry red cover that could stand up to Victorian weather and freeway travel. 

Here we were in sunny, wet, sunny, wet, sunny, cold Melbourne on the first day of Spring. It was night. I'd been to a bar for a tipple before the event. I caught up with a writer friend. Music was blaring. The streets were full. I'd picked one of my favourite dresses to wear. My ticket was in my bright red handbag. I was excited and sorted. For the first time in years I was able to attend an event alone. Not even a drop off or push to my seat. I got to the front of the theatre bid my husband and son a quick farewell and headed inside while they went off to grab a glass of wine and some food. The freedom and independence was both overwhelming and exhilarating.

"Where's your companion?

"I don't have one. It's just me."

All good. Keep rolling.


Companion question 2

Companion question 3

Companion question 4

Companion question........

Part of it I know was making sure the disabled woman was sorted. It was their job. And don't get me wrong, everyone was pleasant. There was no ill intent.

But it was my chair that prompted the questions. It was my chair that caused concern.

Despite me obviously rolling in alone.

Despite happily sitting alone.

Despite me having said I was alone.

No one went up to any other solo ambulant patron to repeatedly inquire as to the location of their companion. Not to say there weren't others there with disability. Not all disabilities are visible. In fact the majority of disabilities aren't visible. I was one of those invisible disabled people for a lot of years. I required a companion back then. Before Lucille. But no one realised that my husband was being dragged along to an event because I was unable to safely attend alone. I am far more functional with Lucille than I was without her. I am far more visible with Lucille than without her. Yet the more visible my disability the less capable people think I am.

A woman in a wheelchair alone? That's not right. Where's her carer? Where's her companion? Something could go wrong.

Disabled people need a companion. Except when they don't. 

For the first time in years thanks to Lucille I could head out alone. I could be independent. I could go where I wanted when I wanted. I could breathe. But the idea of a disabled person without a carer or companion is anathema, and I was reminded of it once more. Paternalistic attitudes persist. Sometimes enforced by the very processes designed to aid us. And they take the edge off what was a fantastic night.

Asked once, I would have palmed it off. But repeatedly. Well it's hard to ignore.

When I'm already in my dedicated wheelchair seating. When I'm sitting, happily farting around on my phone waiting for things to start.

Finally alone. And suddenly I realise how unexpected that is.

The default position is that disabled people need a companion. 

We can't go out alone.

We don't go out alone.

In reality this is one small example, it happens time and time again since Lucille and I have been able to do things solo, but its also a subtle part of the disability narrative that permeates all aspects of society. Visibly disabled and alone is unexpected. Visibly disabled and alone makes people nervous. Visibly disabled and alone and when asked, I say I'm fine or I can mange, it is frequently ignored. Visibly disabled and alone? The computer says, "no".

The default position is that disabled people cannot manage. 

The default position is that we are less.

The default is reinforced.

All the live long day(s).

When we are patted. Talked to in a singsong Play School voice. When people are overly solicitous. When people are nervous. Will we need something? We must need something? Will there be a problem? Will we bite? When we are pressured to go with an attendant. Go with an attendant NOW. Even when we say we're sorted. Even those times when with a partner who also says it's okay and it's sorted. Because my wheels represent inconvenience, potential problem, and lead to annoyed fluster. When we are in a shop with another person and we are ignored and spoken over like we are not there. When we are told that we are SO brave. When we are told that it's SO good to see us out. When we are told that we don't know our own lived experience. When others want to label us. Or tell us we should act or look a certain way. When people leap like they've just touched an electric fence instead of simply moving aside. It's not catching folks. You'll be okay.

I rolled out of the venue into the drizzle and the night. I managed to go to yet another bar, but my companions weren't my carers. I didn't need them to hold my hand. They were simply my husband and son. I rolled next to them and chatted. Ordered my own glass of wine. And drove Lucille with wild, slightly pickled, abandon through the streets of the CBD giggling and being a smart arse at 1:30am. Then dinked my adult son through the hotel hallways, speeding, laughing loudly, almost crashing, while zigzagging our way to our room.

Sometimes I need a companion. An advocate. A carer.

I'll let people know.

But when I don't?

I just want to go out by myself and enjoy the freedom and independence I haven't had in years. I don't want fluster. I just want to fly under the radar like everyone else. I just want to be. At an event, in a cafe, or at the shops.

I've fought damn hard for this independence.

Don't rain on my parade people.

[Image: a happy green haired woman sits in her red wheelchair in a red carpeted foyer. She is surrounded by people and wears a kick arse black dress with pompoms on the hem, red compression stockings and scarf and knee high boots she could never walk in.]

Bringing out Babs again as she says it so well.

Wednesday, 31 August 2016

Seeking Guest Posts for Dysautonomia Awareness Month: Theme this year is DIVERSITY

[Image: Background is my green velvet bird and flower pillow. Text reads: Seeking Guest Posts Dysautonomia Awareness Month Theme: DIVERSITY find details at]

Each year I try to have a different theme for Dysautonomia Awareness Month (October). I've had general open submission, a focus on Australian and New Zealand stories, and even an Arts program where patients expressed their life with Dysautonomia through everything from drawing to poetry and music ('twas rather awesome). Each of the guest posts in these themes have been brilliant and reflect an amazing and diverse group of people in our community. It's been and honour to be able to share so many voices. 

This year the focus is to be DIVERSITY. I want to focus on groups within the Dysautonomia community who are under-represented and have difficulties accessing medical care or diagnosis due to being part of these groups.  The impetus for this theme comes from the many emails and messages I receive with an ongoing theme of people feeling isolated from much of the Dysautonomia dialogue and media, which can occur for a whole host of reasons.

Information regarding Dysautonomia tends to focus primarily on POTS, younger patients, Caucasian patients, and women. It's the nature of many illness and disability groups that certain subgroups receive more attention (eg within dialogue around breast cancer there is little talk of men who, although a significantly smaller percentage, can also develop breast cancer and such a diagnosis comes with a whole host of issues specific to men), not through ill intent it just seems to happen, and Dysautonomia is no different. Intersectionality in all these communities is an area that needs far more work and exposure (#disabilitysowhite is an illuminating hashtag to follow on Twitter and I highly recommend checking it out). We know ethnicity, age, education, socioeconomic status, and geography, amongst many other factors can affect not only access to appropriate Dysautonomia diagnosis and treatment, but healthcare in general. Even simply having access to the Internet can make or break access to health care. Whilst I can bang on about these issues, it is only those with lived experience of these factors who can truly express their experience and needs with all the nuances that come from belonging to certain groups.

So I want to break out of the dominant pattern and offer up space on the blog for other less represented groups to share their stories. In reality Dysautonomia presents in many ways and doesn't discriminate based on sex, identity, geography, ethnicity etc. An appreciation and inclusion of diverse voices can only make our community stronger.

Bring on the DIVERSE voices!


If you fit into one (or more) of the  groups below (or if there's one I've missed and you want to suggest) drop me a line. 
  • Diagnoses under the Dysautonomia umbrella other than POTS (POTS will be heavily covered by all the Dysautonomia organisations during the month)
    I'm looking for submission from people with other forms eg, NCS/NMH/VVS, OI, AAG, OI, OH, AAG, PAF, MSA,, FD, or a more general Dysautonomia that doesn't fit a type.*
  • Men
  • People of Colour
  • Culturally and Linguistically Diverse Groups
  • Rural or remote
  • Over 40 years of age
  • Disabled
  • Countries where there is little to no awareness (I'd love to share stories from areas such as South and Central America, Europe, Asia, and Africa, I do get email queries from patients in these areas desperate for information, so I'd love to share more of their voices). 
*Having said that, if you are living in a remote location, live in a country with little awareness, or identify as LGBTQIA or fit into one of the other groups and have POTS, please feel free to apply as it is often these other aspects of life that can add another level of challenge in seeking care or living with chronic illness and disability.

How to Submit your story:

I'm looking for pieces focusing on how being part of one of the groups above has impacted positively or negatively on your diagnosis or access to treatment or simply living with chronic illness and disability? Do you have any solutions or ideas how to improve the situation? Or even how belonging to one of the above groups makes your Dysautonomia experience unique.

Submissions must include:
Short bio max 100 words.

Understanding that culturally, or for reasons of safety and privacy some posters may not wish to disclose their name, posters can be anonymous.

Max 500 words.

12 Times New Roman 

Please attach any photos or pictures using JPEG (Posts with photos tend to attract more traffic).

Depending on the number of submissions some pieces may not make it onto the blog. But I will attempt to get all submissions up during the month and some may be used in guest posts in the future.

I do reserve the right to edit to fit (but will let you know prior to publication), and wont accept any works that include hate speech. My blog is a place of inclusion regardless of sexuality, identity, ethnicity, religion, or lack there of etc. All who come with an open and welcoming heart are welcome.

Send to rustyhoe (at) livingwithbob (dot) com

Submissions close Saturday September 24th 2016

Looking forward to reading and sharing.


Saturday, 27 August 2016

Disability erasure at it's finest. Thanks Brazilian Vogue.

[Image: a screen shot of a Vogue Brazil promotional photo of able-bodied models Cleo Pires and Paulo Vilhena cripping it up thanks to the miracle of photoshop. Who knew your paralympic dreams are simply a mouse click away?]

How do you celebrate paralympians without actually celebrating paralympians? By photoshopping Brazilian soap opera actors to look like they are missing limbs. Actual paralympians were there on set. To provide inspiration. Because that's what disabled athletes and disabled people in general do best. We provide inspiration. Not enough to actually be in the photos. Oh no. We couldn't have that. Not us icky confronting disabled people. Ew. Who'd want them in Vogue. It might make people uncomfortable. But we can make the disabled totally relateable and palatable by using able-bodied actors. It's not like paralympians could be worthy in their own right. They are only worthy when seen in reference to the able-bodied. Look, they're just like us. Brazilian Vogue has come out to say it wasn't their concept and that the actors involved were responsible. That they chose to run with the advertisement and can see nothing wrong with the concept. Well lets just all shift the blame and sweep that part under the carpet.

The caption runs that "We're All Paralympians", Except we're not. I'm disabled, I've got the progressive neurological condition, even a set of wheels to get around, and a disabled parking permit, and still, I'm not a paralympian. Neither are the Brazilian soap stars in question, or any other able-bodied folk. Or 99% of disabled folk. You know who are paralympians? The actual paralympians. The disabled athletes at the height of their professional sporting careers, they are the paralympians. And they are the ones who aren't good enough to be in an advertisement promoting the Rio Paralympics.

What hope do us mere mortal, boring, average, run of the mill disabled folk have, if even paralympians can't make the cut for an ad for an event in which they are the stars.

In an advertisement promoting the Paralympics. I'm probably going to keep mentioning that part as despite having first seen this advertisement a day or two ago I am still gobsmacked that they came up with this concept and it made it's way through all sorts of levels where someone could have spoken up with a gentle "Hey mate, you might just want to rethink this", or a more direct "You're being an ableist dick, dude" and simply vetoed the whole idea.

It's just the latest instalment in the very public farce that has also meant that there is a shortfall in funding for the Paralympics. That money set aside to enable disabled athletes from poorer nations to attend was instead used to clean the green pools at the Olympics. That venues are being dismantled and many sites where the paralympians will be housed are not accessible. But hey, you know, they're for disabled folks, so it doesn't matter quite as much.

Whilst this is a very public example of ableism, it is symptomatic of a wider community attitude not just in Brazil but around the world, that disabled bodies are unpalatable and that as a group we matter less. And most of us don't have the currency of being awesome athletes to offset our unpalatable disability. Though in truth while so many are all happy to claim the achievements of our paralympians, the same people are often the ones that bemoan our drain on public coffers for the National Disability Insurance Scheme (NDIS) or are indignant at the humble parking permit.

Time and again we see discussions of disability not involving the disabled people who live the consequences of those discussions. We are continually talked about or around. Others know better. Hell, an able-bodied actor can play disabled better than an actual disabled actor. It's all very "Don't back-chat me fella. I know boats!"

Time and again we see discussions of diversity that don't include those with disability. We are either not included, or the issue is not even raised. Even in discussions of feminism disability has often been seen as an after thought or inconvenience, or disabled women have been told how to express their views and even shut out by groups purporting to support all women.

Time and again we see token representation. Oh you have one person in a wheelchair on one panel in a fortnight long festival. Well you've met the quota. It's not like we could have two disabled people present. Or that there could be more than one type of disability represented. Oh no. We are a homogenous group obviously. We must all think and live the same way. Or as in the glaring case of the Perth Writers Festival earlier this year accessibility was such an after thought that a disabled person couldn't even get around to see events. Nothing like an inaccessible festival to tell you in no uncertain terms that you're not welcome.

Time and again we see claims of diversity (I'm looking at you Myer) that don't include disability (or various ages, body types etc). Whilst organisations such as Starting with Julius are making great strides when it comes to including disabled children in advertising, adult representation is still far from common. The same companies that are using disabled children in advertising aren't transferring that same diversity to their adult range. And diversity in general rarely includes disabled models. Or if it does that representation is so rare as to be heralded as suddenly representing a more accepting and inclusive fashion industry. The same fashion industry that still fails, with some exceptions, to even acknowledge that disabled people can and do enjoy fashion.

Media in general still falls into three camps when reporting disability. We are either inspirational , worthy of pity, or as is now more often politically expedient, "bludgers" or "leaners". The media continually reinforce a negative portrayal of disability though their language (eg they continue to fall back to the use of terms such as "wheelchair-bound" or "sufferer" despite clear guidelines on disability reporting being readily accessible). Not only do the wider community come to believe these categories, but as this piece by Carrie Wade examines, disabled people as members of that same community, end up internalising ideas of Good Disabled and Bad Disabled. Or really it is Good Enough. We get a pass at a certain level. Not enough to be worthy of a Vogue shoot mind you. Don't start thinking you're good enough for that little disabled person. Good Enough that we approve of your existence, but know that you can easily become Bad Disabled at any time if you don't toe the party line.

It is the combination of these beliefs and actions that lead to increased levels of violence against the disabled.

We are less than.

Not even worthy of being in a photo shoot when at the pinnacle of sporting prowess, in an advertisement promoting and celebrating the pinnacle disabled sporting event. (The sarcastic part of me wants to know if Kylie Jenner was a consultant on the concept.)

Is it any surprise that more and more disabled people are turning to social media to share their lives in writing and through selfies on platforms such as Instagram and Tumblr. We are continuously erased from the current social zeitgeist by active exclusion or pity/inspiration tripe reporting. While the Brazilian Vogue issue is a glaring example it is both a product and extra fodder for the exclusion and othering or disabled people. Be it the recent massacre in Japan where the victims remain nameless numbers with the thin veneer of cultural norms used as an excuse for this erasure, or the disturbingly high rate of violence against disabled people, in particular disabled women, around the world including here in Australia, all derive from the same base level of negative beliefs surrounding disability and the people who are part of that community.

"Other statistics indicate that 90% of women with intellectual disabilities have been sexually abused. 68% of women with an intellectual disability will be subjected to sexual abuse before they reach 18 (Frohmader, 2002)".  (‘Double the Odds’ – Domestic Violence and Women with DisabilitiesWritten by Sue Salthouse and Carolyn Frohmader. This paper was presented to the ‘Home Truths’ Conference, Sheraton Towers, Southgate, Melbourne 15 -17 September 2004. Copyright 2004.)

It is estimated that 1 in 5 people are disabled. Yet we continue on the fringe, an unpalatable reminder of the fallibility of the human body and life in general. Disability is seen as a horror to be avoided and those who live it are seen as living horrible worthless lives. How on earth could someone be disabled AND happy? We are seem as villains in movies, welfare bludgers by the politicians, poor things (stop patting me, people!) or inspirational heroes for getting out of bed or buying milk. And when we raise our voice to call out ableism we are whingy. The people we hold to account for poor behaviour or attitude assume the role of victim. We are told to be quiet. People have good intentions. They know better. And they are shocked and angry that we have the audacity to say we might actually be able to articulate the nuances of life as a disabled person better than them.

"Pires [an abassador for the Rio Paralympics and one of the models] defended the photos on Instagram saying, ‘As ambassador, we lend our images to give visibility [to a cause], and that’s what we are doing, my God.’" 

AKA Damn you ungrateful disabled people how dare you tell me I'm wrong!

Brazilian Vogue and the actors/models involved can side step all they like. For the rest of us we can see it for the BS it is. And we're over being quiet.


Monday, 8 August 2016

Wheelchairs, Walking sticks, and Wall-walking.

[Image: 8 photos of a green-haired woman varying between sitting, standing, using a walking stick or a wheelchair. Photos also include her awesome merle Great Dane and constant furry companion, Freyja. The woman is smiling and happy and frocked up in each picture.]

My mobility varies.


Sometimes hour-to-hour.

Some days I can stand unaided.

I can walk around my house, furniture and wall-walking. Using my strategically placed chairs. Or Freyja makes a handy Great Dane sized stabiliser by my side.

Some days I need my walking stick. It allows me to cover short distances. To get in and out of the car. Out in the backyard or out to the mail box. I like to use my legs when I can but some days even the best Can Do attitude wont make the muscles work.


Some days I need my wheelchair, especially if there's distance to be covered, my legs are particularly weak, the pain is too much, my blood pressure is playing up or the exhaustion overwhelming.

Some days I'll use my wheelchair to go out, say to a cafe, AND will then use my walking stick to traverse a short distance to a non accessible loo. Often further exhausting myself in the process.

Some days I'll use my wheelchair but manage to take an unaided step in and out of the car.

Some days I'll mix it up as my body decides to be finicky or I push my piddly boundaries.

Hell, some days I can't get out of bed or crawl to the loo.

And while I'm at it, 99% of the time I'll frock up because I enjoy it. Because disabled people can enjoy can enjoy fashion. And we can dress however we like and don't have to conform to a narrow and false idea of how we should look or act.

It seems to not only confuse but anger many people when they see people standing from a wheelchair or alternating the mobility devices they use. But it's really not that hard. Not everyone in a wheelchair is paralysed or uses it 100% of the time. They are a mobility aid for a whole host of disorders.

Mobility can vary for many people. We use the best tool for the task on the day.

My wheelchair allows me to leave my house and gives me independence and freedom that I would otherwise be denied.

My walking stick allows me to make my way to my car in the driveway or pick grab the eggs from my chook house.

My legs let me do, well not a lot these days, but when they decide to get their shit together for a little while I make the most of it.

Disability is diverse.

Open your eyes and your mind.


Today's musical accompaniment is dedicated to a now blocked individual on Instagram. If you see someone using multiple aides, or standing from their wheelchair, don't show yourself to be an uneducated, small-minded, judgemental arsehole. It's not really flattering for you and has to be an exhausting way to go through life.

Sing it Babs! 

Tuesday, 19 July 2016


The coffee machine squeals. Like Pavlov’s dog a strong desire for another cup of black liquid ripples through my body and I weigh up the hour and the likelihood I’ll be up all night. Not to mention the likely need to pee in the communal loo out the back of the shop. Always a pot luck adventure. Will it be bearable? Or more likely, will it resemble a scene out of a Tarantino film. Not to mention that accessible loos are rare as hens teeth. I can see the rising cloud of steam in my mind’s eye and caffeine sings it’s siren song. I throw caution to the wind and suck up my petulant bladder issues, embrace my doom and order another. To my right the sweet smell of citrus tart rises. All is well with the world. 

I’m the only customer seated at long line of otherwise empty, square, faux-marble tables. We’ve lived in this town for two and half years now and only really discovered this local bakery a few months ago. Drawn by a sudden inexplicable need for a classic meat pie which sent us in search of a proper country bakery. And here I am all these months later hoping that a change of scenery, a long black and a baked treat can prompt some coherent words out of my sluggish brain. My blog is seven years old today and I refuse to not at least attempt a post to commemorate its birth.

It’s been a rocky road this year and words haven’t come easily. But I’m on the upswing (I type before frantically reaching for the closest piece of wood). An upswing that is becoming more apparent as the days creep by. I’m getting better at pacing. At self care. At time. All things that were never my strong points long before illness and disability came calling. I still beat myself up about my failures and inefficiencies. I still lie awake trying to recall the important things that I know I have forgotten. I am still my worst enemy in many ways. But seven years since I first began tapping away on a keyboard, transferring the circumlocutions and tangential thoughts that raced thorough my mind into glyphs on a screen, most of which resembled those things called sentences and paragraphs, I am still here taping away. Hoping that the process of transference will somehow clarify my sense of self and work through the emotions that come along with a life of illness.

Next month is ten years since I first ended up in the Emergency Department at work. A decade working through not only the physical, but the emotional, social and psychological aspects of health are not really one I want to commemorate. But three years from that day I managed to pump out my first post. It wasn’t much just a basic, This is Dysautonomia, post. Pretty bland and not one that warms the cockles of my heart with sentimental pride. My next post was in truth my first. One that I had worked on encouraged by my counselor in the months proceeding my decision to blog. It was a great purging. Not my best writing but it was raw and honest and my heart burst all over the page desperate to remove the burden of those proceeding three years. To be able to breath again. Even for a moment. It was a sweet release. Until I shared those words on the public domain, they’d remained my secret. They remained my silence and my shame. Then I set them free. I stood naked in the middle of a crowded room and waited for the ridicule I told myself was a certainty. Instead I found a community of people who understood. The silence and shame so many felt was theirs alone, was shared. Baring my truth was empowering and addictive.

I can look back at my words and track the ups and downs of the last seven years. Life is catalogued.  All seeming more vital given how poor my memory these days. I look back and see the times I found the laughter and the times when it was all too much. I see all the stages of grief played out time and again. Acceptance raises it’s head more frequently these days than in the beginning. Though even it is beaten into submission by anger and fear, denial and much pouting with annoying regularity. It’s all there warts and all. The truth of my experience. I look back and see where I emerged from hospital under 50kgs and looking more wraith than human being. I see the sunken eyes and read my own words talking about fear for the future. Fear for the unknown that was taking over my body. Trying to balance living with uncertainty and an unbearable shadow dominating each and every day. Life became complex and I like to think I negotiated it well for the most part, but at times it’s been a complete balls up. I have failed in being the perfect patient, through self-sabotage (denial is a wonderful thing) and through the regular frailties of simply being human.

I want to say I know the secrets. That I can lay out the seven secrets to living well with illness, one spiffy item for each year of blogging. But the truth is I don’t think there is a set list. There are some big overarching ideas, but for the most part we all wing it. We aren’t a homogenous group to which you can apply a nice neat list. I listened to a podcast on Frame of Reference today and it reminded me of that individuality. We all come from different backgrounds and carry the baggage of our unique pasts. Even growing up with two siblings I know my recollections of our youth are very different. We interpreted and processed the events of our lives with an eight year gap in brain development and unique personalities and interactions with friends and family. All three of us have fiery tempers and are independent to fault, but beyond that our lives are incredibly different and the sum of our life experiences over the past 43 and 51 years respectively, have made us who we are today.

And so it is with illness. I see it even in the forums where two patients will see the same doctor, receive the same information but walk out feeling that they have had very different interactions. We walk into every encounter in the medical system with a set frame of reference that helps to determine our path from that time. We walk in carrying ideas about illness and disabiltiy, self-identity, and religion. We walk in with differing social and familial support, balanced against the social and familial responsibilities we all bare. Introvert or extrovert. In light of that it can be hard to say what the tricks are to making it through the world of chronic illness and living a full and happy life.

I do know that we can do it. I see the resilience in the friends I have made over the last seven years. I see it in my own words on this blog. I need to read them more often. To remind myself of where I’ve been and where I’m going. This life of mine hasn’t turned out as I once expected, but it is a good life none the less. I read a great piece somewhere, at some point in time, my befuddled memory wont tell me where, that life is flux. It is change. And that is what the last seven years of blogging and ten years of illness have taught me. (Well held me down and screamed in my face with relentless regularity may be more accurate.) The flux and change are natural even if they haven’t always felt that way. My life isn’t like other lives, but then again neither is anyone else’s. We all tread our own paths, even all those other 43-year-old, Australian women with green hair living with Dysautonomia. We share snippets of each others lives, but our unique parts are what determine our life experience and outlook. And equally what make us fabulous.

I can say there have been bonuses along the way. Friends I’ve made and strength I’ve found. There is a whole community of amazing people out there in the ether that I would never have been lucky enough to meet if I’d never become ill. My outlook on life that was really in it’s infancy back in 2006 has been honed and refined. Blogging has become an act of defiance. Breaking free of the lessons of my youth that said that illness was shameful and weak and that you should never speak up and share. The importance, and more than that, the power of one’s voice is one thing I have come to embrace. There are still those who don’t understand why I choose to share. There are those who mock social media. But for myself and others like me, embracing social media has become empowering. We don’t have to wait on the gatekeepers to allow us to speak. We don’t have to ask permission or sanitize our lives to be palatable to the powers that be. The power of our voices can lead to conflict as existing power structures are challenged. Not just in direct means through activism and advocacy, but by means of their growing irrelevance in an age where we side-step them entirely. We create our own communities. We share our stories and no longer wait for someone else to tell us about our experience. In the time it takes a monolithic media outlet to write an op ed on the passing fad of social media, our voices have been heard all over the world a thousand times over and we grow in strength.

Illness has been freeing. I have learnt more about myself over the last 10 years than I have in any other period of life. I care less for the opinions of others, be it what a woman over a certain age should wear, or how I should react to illness. If I listened to the words of those who talk about approaching illness in a dignified manner, I’d never have written a word. And I’d be the poorer for it. Such opinions seek to silence us least we make them uncomfortable. Because having to hear the reality of our experience is so challenging. Illness is messy. But in hiding the truth we do a disservice to all those who find themselves thrown into the new world of broken and decaying bodies. Illness is hard. I have cried myself to sleep more times than I can count. I’ve had to give myself enemas and puked and passed out in foul public toilets. But I have also had a life of joy and love. I am disabled and I’m happy. I live my life and embrace my weirdness. These are the stories that need to be shared. Not the dichotomized sanitized inspirational meme version of illness and disability, nor the pity worthy, “I’d rather be dead than live like that”, alternative. Life is a roller coaster of good, bad, and mind numbingly boring ordinary. It’s pretty damn beautiful when you look at it.

So I sit here seven years on, 43, bright emerald hair, haphazard clothing choices in my wheelchair tapping away at a keyboard in front of a fuscia wall in a small bakery in country Australia, realizing that life isn’t that bad and no matter what I’ll be okay. And so will you, dear reader. No matter what life or illness throws at you, you’ll be okay.

“Those first days and months are hard and scary and lonely. But you'll make it through. You think you wont. You'll want to throw in the towel and scream "No more!", but you'll make it out the otherside. And you'll do it again and again. I can't predict how your symptoms will pan out overtime. We are all very individual. Some will get better, some will have symptoms that wax and wane, some will have a chronic but stable process and some, like myself, will progress. Your body may still be broken, but your ability to deal with it, will get better.  You will find your stride. You will find the things and people in your life that matter and make you happy.  You'll be able to breathe,even when it's bad. It wont be easy but you'll find that your ability to cope and your acceptance will grow. Your spirit will heal and you'll find direction you never imagined. You are filled with possibilities and, if you give yourself permission, you'll find them.Being ill can give you a freedom to explore yourself in ways you never thought possible. Life with Dysautonomia or any chronic illness, is a life changed, but sometimes that change is a wonderful thing....

.... Just know, it gets better. Not in the Disneyesque sense of shooting stars and rainbow-farting unicorns. But in the real world sense  where you're battered and bruised but you're stronger than you thought and more at ease with your life. It takes time, and there will be tears and disappointment and setbacks.But one day you'll turn around and realise that somehow you made it through, and no matter what your body is or isn't doing, you're okay.”
(I realised all this back in 2012, but sometimes I need to remind myself of own words)

That is what seven years of processing my life, my thoughts and emotions, though this blog have given me. So I’ll keep tapping away. Purging my brain. Quality and quantity waxing and waning, breathing in time to the pulse of my body and life. 

Thank you to all who keep reading. You are the rockstars. And your support, encouragement and friendship are what make every hard wraught letter worth it.


We float

Take life as it comes
We float
Take life as it comes
(We Float, PJ Harvey)