Sunday 11 December 2016

Saying Yes

"Sit down drink some wine. You are going to be fine". A little out take from date night a couple of days ago. I couldn't drink wine for a lot of years when I first became ill. The last year of two I started having a glass again and it's been okay. I figure if I'm going to be ill anyway why not at least have a bit of a fun reason for feeling so crap. Sometimes you have to balance up life and decide what's important. What brings you joy. And what things are worth the price of payback. And there is always payback. But there's something satisfying when payback is something you enter into willingly rather than it being foistered on you. It's a bit of a "Fuck you!" to the universe, my body and life in general. And it feels damn fine. I do love this old @asos_au dress for its pop of colour. #dysautonomia #upanddressed #dysautonomia#chronicillness#fashion #frockingup #fashionblogger #ootd #wiwt #everydaystyle #40plusstyle #disabledfashion #disabledstyle #ruraldisability #ruralstyle #ruralfashion #Australia #gippsland #greenhair #Spring #chronicstyle #chronicfashion #365dayswithdisability
A photo posted by Michelle Roger (@michelle_roger) on

It's been a huge few months. I look back and I realise I've squished a lot in. I've pushed myself. Gone with my life motto of "Fuck it!" and said yes to things and put myself out there. It's been exhausting and exciting. I want to say it means I've been riding a good patch. But I haven't. Not even remotely. But I've done things. And that is rather glorious.

If I wait for the good patch  I'd never do a thing. I'd still be lying here in bed like I am today. Waiting to get to that point where I feel well enough, or at least on that even keel for a bit, where I feel up to doing something, anything.

Instead here I am. Typing on my dog drool stained laptop, lying in my darkened bedroom, swallowing down vomit, and writing a long overdue blog post. I want to say I've worked out pacing but the last four days of pushing way past my safe physical limits in Melbourne put paid to that that lie. In reality I hate pacing. Hate it with a passion.

I try. I really do. I tell myself I'm going to do it. I write blog posts about it. And then I fall back into old habits. Why after 10 years of illness and increasing disability, and my psychologist training, do I still fail to follow what I know are the recommended ways to manage energy in a life of chronic illness?

Time and again I fall back to spontaneous leaps of frantic action, followed by spectacular falls. But that can occur because I decided to sit on a couch or pot a plant, so I might as well push it, get dressed up and sit in a bar on a Friday night and have a glass of wine with my husband.

Payback is an unavoidable consequence of living.

No matter if I pace, or embrace my inner Mayfly, payback is there to greet me. And I'd rather embrace "Fuck it!" and go out in a blaze of glory aka fall flat on my face as I lose my tenuous grip on bodily control and am once more reduced to a messy, weakened pile of symptomatic sludge.

Because if I wait it'll never happen.

'No', is easy is some ways. Just like excuses.  And I have an extensive list of very valid ones. 'No' can be a really healthy option. When I first became ill my inability to say no was a burden. I put myself last and kept trying to be the woman I was before my body reached the point of no return. I became sicker as a result. Everything I did was half-arsed (actually one eighth-arsed might be more realistic). And I beat myself up for my failures, while simultaneously trying to meet yet another now unattainable role. Because I was conditioned to always say 'yes'. Because I was the go to. The confidant. The one who could always be counted on in a crisis or to pick up the slack. I was the solver of problems and completer of tasks. 'No' wasn't in my repertoire. But now? That useful purpose is lost and mired in unhelpful behaviours.

No is best friends with my anxiety. No is my easy out. When my self doubt rises to choke me or when I lose sight of myself, no reigns supreme. At times the sheer overwhelming nature of illness means 'no' continues to be a survival mechanism, a route to self care. But more often than not, it is also the path that stops me from being part of life. It allows me to crawl up in a space that has the dual process of safety and respite, whilst holding me tight in a really unhealthy frenemy trap.

I walk a fine line with no, with pacing, with "Fuck it!" I make many mistakes along the way. But I am finding that when I embrace the "Fuck it!" side of the ledger I am happier.

Every scrap of payback becomes bearable because it is an issue of my own making. 

And every time I try to force myself down the sensible road of pacing I am more uneasy with myself and my world. Sure there are times where it makes sense. I'll give my old professional self and all the professional and personal advisers a nod and say, yes, pacing helps. It is part of my recovery process when I hit the really bad patches. The patches where a flare is measured in months rather than days. When I think I'm managing things and my body sees that as a "challenge accepted" moment. Those are the times that pacing help. But outside of that?

For me it is not a salve to pain and malaise. It binds me tight and sits uneasily on my shoulders alongside all the other burdens of illness. So I continue to tread, shuffle, stumble, and crawl my way through life with spontaneous short-lived moments of glory.

I drink the glass of wine. I say yes to a talk. I stay up until midnight and roll around the streets of Melbourne. Or eat all the things I shouldn't at a Korean BBQ because it tastes so so nice.

And damn it feels good.


Three things I am glad I said yes to are linked below.

Firstly, I agreed to be part of the Fully Sick Podcast with Jenny O'Keefe. I'd listened to earlier interviews Jenny had done and loved, a) that it was all Australian stories, and b) that it was far more conversational than a regular Q and A. Jenny is such a lovely person and so easy to talk to. I probably said too much and I know I wish I'd rephrased or expanded in certain parts. But hey if I didn't beat myself up and over analyse my actions and words after everything I do it wouldn't be me. Plus, I blame the fatigue and brainfog.

Secondly, I agreed to be part of the Digital Writers Festival 2016. I was part of a panel with Anna Barnes and Katerina Bryant discussing Chronic Illnesses Online. I will say that pushed me. I was exhausted, had some family dramas going on and that disconnect of talking via the net, vs in person is still really hard for me. Not talking on the phone hard, but still a struggle and quite exhausting. But both Anna and Katerina were lovely and I'm glad I had the opportunity to share the time with them.

Thirdly, I agreed to be part of the Her Words interview series. And not only agreed, but put myself forward, which is so far from my normal behaviour I still don't quite believe it happened. It was an exhausting and long process, plus I'd spent the night before and that morning, wrapped around the toilet bowl in our hotel room. But the women involved were amazing and encouraging. It was a safe space and a space where their dedication to diversity and supporting women's voices was clearly evident. I ended up feeling like death not even slightly warmed up by the end, but also energised and excited. Nothing like being in a room of people who all just get it. I spoke about Self Love especially rediscovering it after becoming chronically ill.

My first reaction for each of them was to say no. But I said yes. I pushed through, crashed after, and was glad that I ignored that first reaction.

Friday 2 December 2016

A path to nowhere.

[Image: A concrete path stops sharply ending in green grass and worn dirt. A woman's lilac compression stockings knees and edge of black and white skirt are seen alongside the joystick controls of her electric wheelchair.]

Once upon a time there was a disabled woman who lived in a medium-sized country town. After years of dependence and isolation she was finally bequeathed a magical wheelchair. This wheelchair had the power to bring back her independence and allow her to access the world around her in her own time and without a man servant/husband/son to push her. She would no longer be bound to the whims of time off, or after hours, or being propped where her man servants decided to prop her instead of where she wanted to be.

The disabled woman was excited to receive her chair. She promptly hopped in and took her first ride to freedom. She rode around her housing estate and promptly stopped as the foot path ended in a pile of dirt and stones and a busy country road. Undeterred she tried for another path only to find that too ended in grass and little more than a foot worn dirt track two hands span across. Undeterred she once more took off only to find all other exits leading to the main road between her town and the next. Dirt and gravel or thick potholed grass instead of foot path. Trucks carry livestock and farming goods thundered towards her at speed. The woman could not leave her housing estate. She was once more at the whim of a single car that could carry her chair or a public carriage service that could be employed to lug her for a substantial price where she wished to go. If it was available. And she wasn't in a hurry. Or knew the day before what she needed to do and had booked in advance. The disabled woman was frustrated and sad, and full of expletives and rising anger.

Earlier this year a path was proposed that would lead from the housing estate I live in to the rest of the town. I was excited. Such a path would mean that I could finally leave my house unaccompanied and go for a coffee, to the library, local gallery or take a turn in the park. I filled out the surveys and attended the community consultation sessions. My husband spent time on the phone and filled in the same surveys. I went to the council meeting and had my say, as did my husband. Whilst I was not happy with the eventual route the path would take due to it's isolation, I resigned myself to the fact that this path would still at least allow me to access town and I could always invest in a tasar or add a battering ram to my chair. It was supposed to start being built by the end of 2016. But week after week went by and none of the usual signs of an upcoming infrastructure build eventuated. So I contacted my council. I was informed that not only would construction not be starting by the end of this year but that tenders would only be sent out early 2017 for the first half of the path only. First half. Not even the whole path. Not to build. But for the tender process. Which will take, well who knows. The second section. Well at present it is supposed to be completed at some point within the 2017/18 financial period. But there'll be a first half. At some point. I'll get to roll along to another edge. Another slab of concrete ending in grass, gravel and frustrated access.

At the council meeting I tried to impress on the councillors that this path was not just about an alternate way to walk kids to school or a pretty walk to run with your dog, that for people like myself it is about a lifeline to the rest of the town. That this path represents the removal of a financial impost (the use of an accessible taxi service to carry me and my wheelchair) that other members of the community need not pay thanks to the choices that come from being able-bodied or being able to drive. That at present to simply go into town independently to have a coffee I am already slugged with $30 long before I consider a long black at my local cafe, or head to the library to check out a book. That a need for the hospital or medical centre would also attract the same fee. That this path represented an independence that has been lacking in my life since moving to this town nearly three years ago. That as much as I want to participate in my community I am bound by costs with no alternative offered up. That dependence is foistered upon me by the lack of a path. And that I am not alone. There are disabled people, frail people, people who at present are not disabled but could become so at any point in time. And that all of these people required a path for the most basic of needs, access.

Image: an empty council chamber. Blue-grey carpet and a circular wooden table set up with microphones, coloured water bottles and name tags sit in front of a lectern for community members to speak. A lectern as I found out not set up for members of the community who may be in a wheelchair and unable to stand.]

I am resigned to my concerns about safety being wiped away by “there'll be lights” (how that helps in the day I'm not sure) or that there was a reliance on the presence of other users (which will primarily be early morning or after work, not at all during the day). That the path is now to run through an isolated park situated next to open farm land and behind an industrial area and stock yards, because this is a “prettier location” a supposedly safer location. I am not resigned to the fact that this path is not seen as a form of accessibility rather than a nice place to walk the dog or kids to school.

I received this email on the same week as the council was celebrating Social Inclusion Week 2016 with events on all week. None of which I could attend without paying the roughly $30 for a round trip to town. And I sit here with International Day of People with Disability coming up on the 3rd of Dec trying not to get angry about access, (or that after contacting my local council again I am told that there are no events planned for IDPWD on the 3rd. )

To add insult to injury this story about the giant sink hole in the Japanese town of Fukuoka. A giant sink hole involving significant engineering filled in a week. A week. That such a large and important project could be rectified in such a short turn around and my local council can't build a path for two plus years.

Do I hassle my council again? A tiring process that involves large walls of red tape to beat my head against. Should I attend another meeting to be say my piece, when I know I will be ignored or patronised (eg last time I was there a councillor suggested that I and a member of council who was also a wheelchair user could race together at the opening of the path). Should I see them go wow I hadn't considered that, but I'll ignore that factor anyway. Should I have to? Should I or any other disabled person living in this large and expanding section of town have to fork out even more money to do the most basic of activities such as going to the doctor, to buy some milk, or have a cup of coffee? All activities which support local businesses.

1 in 5 people live with disability. 1 in 5 people rely on basic things such as pathways to access their community. Don't talk about social inclusion when you are delaying pathways that would increase inclusion. Don't talk about social inclusion if I and others in other sections of the town without paths, pay $35 for the privilege of a coffee at a local cafe by virtue of my disability. Or are left to stay home yet again doing loops of a housing estate trying not to go stir crazy.



Sunday 30 October 2016

Dysautonomia Awareness Month 2016 Guest Posts. Devon. Living with Dysautonomia in Rural Kentucky.

Next up for Dysautonomia Awareness Month 2016 is Devon who lives in a rural part of Kentucky in the US. It's been really lovely to share a lot rural voices this year. Whether it be here in Australia the US or any area of the world patients living in rural areas experience a lot of similar issues. Things like distance, lack of facilities etc can make life difficult when you're not ill, but add in chronic illness and it ups the ante. Thanks for sharing your story Devon. 

My name is Devon McCormick. I am a 33 year old female preschool teacher from southern Kentucky. I am not married, but I have a boyfriend of nearly two years. I was diagnosed 6 months after we started dating.
I live in a very rural area. We have a Wal-Mart, three red lights, and a Taco Bell. I live alone, but I have a very close relationship with my family. I was diagnosed in April 2016 with hyper POTS at Vanderbilt by Dr. Biaggioni. I was misdiagnosed prior to that. I also have asthma, chronic allergies, and NCS. I have been sick since March 2015. I have had NCS since I was 5.

[Devon pre-sick is pictured above. 
The picture at the beginning is of the is Devon once month after becoming ill.]

I am a rural Southern Kentucky girl through and through. I wear my pearls to my teaching job Monday through Thursday and Friday through Saturday its school colors or UK blue. Sunday is church wear. We say ya’ll and bless your heart as both a term of endearment and insult without batting an eye. Life was good and simple.
My town was so rural that the biggest event was the new Taco Bell opening up. The nearest mall was 70 miles away. I had big dreams but never wanted to leave. I am highly educated with a bachelor’s and double master’s degrees in education. The ability to drive and leave this town gave me the ability to become educated. I was happy to teach in the elementary school I attended. I wanted to be the best at what I did.
Life was moving along well. My career was going well, my family life was fine, and I was Miss Independent. My biggest dream was to attend Vanderbilt and get my PhD. One day, I fainted. No big deal, people faint all the time. I hit the floor. Something wasn’t right. I just couldn’t seem to rally back from this. It was the first time in my life I wasn’t able to come back from something. I have always overcame every hardship and yet something as simple as standing would knock me down. I had hit the wall.
Suddenly, I couldn’t work anymore. I couldn’t drive. My mom had to move in with me. She helped me shower, dress, feed myself, and even use the bathroom. I was fainting 20-30x a day. A simple tilt test would have revealed the answer. However, it wasn’t done correctly. My grandmother worked for an amazing cardiologist who saw through the misdiagnosis and gave me some medication that helped some. Thankfully I returned to work and my mom was able to return home. I was still weak and having seizures.
Finally, I saw a top notch neurologist at Vanderbilt. He then referred me to the autonomic clinic there. The correct tilt table revealed I had hyper POTS. A simple beta blocker taken three times a day and lifestyle changes began making such dramatic differences. After 13 months, I was able to drive again. I also started getting my strength back. I always said I wanted to go to Vanderbilt. I should have been more specific and said as a student and not a patient!

It’s been 15 months since POTS entered my life. I am not the person I was before. In some ways I am better! I am stronger. Nothing will stop me. I will push on and persevere when others will quit. I teach preschool full time. It’s exhausting for a healthy person, let alone a chronically ill one. There are days when I am so tired I can barely stand and am angry and sad. I question why this happened to me. However, I will not stop!

Wednesday 26 October 2016

Dysautonomia Awareness Month 2016 Guest Post Siobhan: The Need for Increased Telehealth Options for Rural Dysautonomia Patients.

Today's guest post for Dysautonomia Awareness Month 2016 comes from Siobhan. It's been great to read more submissions from rural patients this year. Living in a rural area patients face unique issues regarding access to care. As most regular readers know, like Siobhan below, I have to travel for the majority of my care as local specialists who are familiar with Dysautonomia are pretty much non-existent. Telehealth is one way we could improve this situation. I have a few doctors and allied health specialists who have been willing to conduct appointments via Skype or phone, but they are still in the minority. Having just read the stats on survival rates of rural vs metropolitan cancer patients it is clear that geography is a strong and sadly negative predictor of health across many conditions and part of that is due to access to specialist care from diagnosis to treatment. We have the technology to make the lives of rural patients easier, let's use it! (May be an area of personal passion). Thanks Siobhan for sharing your story. 

Siobhan is in her mid 20s and lives in country Victoria with her family, who act as carers. She put a promising career in psychology on hold to become a full-time sickie. She enjoys sewing and knitting to soothe her soul. You can read more from Siobhan at

Imagine a day that begins at 4.30am. You drag yourself awake, get ready and race to the station to catch the train to the Big Smoke. After a 3.5 hr+ train ride, another obstacle awaits - navigating the city. For a rural dweller who is used to services a brief car ride away, the public transport and taxi services in the city can seem overwhelming. You somehow make it to your appointment in a far flung suburb, and wait a few hours for the privilege of spending 10 minutes with a doctor who tells you nothing you couldn’t learn over the phone. Now for the long trip back home, arriving at the station at 10.30pm. You are exhausted.

This seems like a big day for anyone. Now consider how it would feel being a person with a disability. Sounds like an impossible challenge - but this is the only option for treatment for many rural and regional patients.

Healthcare in the country is patchy at best. In my home town of Warrnambool, we do not have dermatologists, endocrinologists, and are soon to be without a single gastroenterologist. There is one private psychiatrist who charges $400 a session, no rebate available. We have only just opened a regional cancer centre in the past month. Before then, patients had to travel to Geelong and live in rented units for the full course of their treatment, which could be upwards of 6 weeks. The emotional and financial strain on such patients is immense.

For those who have complex and unusual diseases, such as dysautonomia, the situation is bleaker. Good medical care requires a relationship with a team that will understands your condition and will work to coordinate your care, from GPs to specialists, surgeons and other practitioners. But if specialised care is so far flung as to be administered hours away from your home town, the chance of a well coordinated management plan is slim. This is if you can find a GP who understands your condition at all - by want of being in the country, many GPs miss out on working and sharing knowledge with specialists who would otherwise be able to bring them up to speed on their patient’s unique medical conditions.

And as for those who cannot travel for treatment? I am such a patient, and have been for 6 years. For many of these years, I was told over and over again by doctors in town that there was no one, no one, who would consult with me over the phone. I was told I had to travel the 8 hour round trip to a specialist in Melbourne. Considering most days I couldn’t leave my bed, this was an impossible ask.

Luckily, I have found specialists in Melbourne who will consult by phone and Skype, and my health is much better for it. The prevailing attitude in the city is still that country patients should and will travel for appointments. I can only hope that medical professionals will increase their understanding of rural and regional patients and offer more flexible methods of treatment, such as Skype appointments, to meet their unique needs.

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.