Thursday 31 October 2013

Round up of Dysautonomia Awareness Month Australian and New Zealand

Well it's the 31st today. The last day of October and the last day of Dysautonomia Awareness Month. It has been a fantastic month and it's been a privilege to have so many fantastic guest posts here on the blog. And I've really enjoyed having an Australian and New Zealand focus as our voice can be swamped at times. Now as my hands are playing up and weak again, I've attempted another vlog to round up the month and look at what awareness means and the need to continue it past this month.

After the fact I noticed how bad my lips are. Chronic dehydration has been a real problem of late regardless of fluid and salt intake. Can't wait until Summer when I can have regular IV Saline again.

I've also included a video I put up on Facebook the other day. It's my attempt at a "It Does Get Better" video. Now since that day when I was bemoaning the fact that I couldn't remove the black bars on the sides. I have since learnt that simply turning my phone on the side solves the issue. D'oh! Yep I am that dull some days. Well most days. Okay so the dumb is there every day, it's just the degree of dumb that varies.

For those unfamiliar, a short explanation of Dysautonomia can be found here.
One of the most famous people with a form of Dysautonomia is former Yellow Wiggle, Greg Page, who lent his name to a research fund at The Baker IDI, here in Melbourne, Australia. Donations can be made at The Greg Page fund For Orthostatic Intolerance.

The musical interlude for today is Today I'm a Daisy by Deborah Conway. This was my very first attempt to create a video and I'm still quite patrtial to it. 

Wednesday 30 October 2013

Dysautonomia Research Down Under - Baker IDI Human Neurotransmitters Laboratory. Dysautonomia Awareness Month

As Dysautonomia Awareness Month starts to wind up for another year I thought it'd be great to have a short look at some of the research that is under way here in Australia. The Baker IDI Heart and Diabetes Institute, here in Melbourne, Australia, is conducting research in a number of areas from drug trials to understanding the underlying mechanisms of various autonomic disorders. Thanks to the staff from the Human Neurotransmitters Laboratory

Researchers at the BakerIDI Human Neurotransmitters Laboratory are actively involved in investigating disorders associated with abnormalities of the sympathetic nervous system resulting in orthostatic intolerance. Their research covers both disorders associated with Autonomic Failure and the Dysautonomias. This group receives funding via The Greg Page Fund for Orthostatic Intolerance.

Recent research from the group, headed by Professor Murray Esler and Professor Gavin Lambert, has contributed significantly to our understanding of these conditions.

POTS (Postural Orthostatic Tachycardia Syndrome) and Noradrenaline transport.

Dr Richard Bayles as part of his PHD investigated patients with POTS. He found that POTS patients have lower levels of the Noradrenaline transporter –the protein that inactivates the noradrenaline signal. He then went on to see if this was due to a genetic change – this wasn’t the case, the genes were normal. What he found was a change in the proteins that chromosomes are wrapped around that effectively turned off the gene the codes for the noradrenaline transporter in patients with POTS. So the gene is normal but it has been turned off. This insight will guide further research into the biology of POTS and the development of future therapies.

Bayles R et al (Arterioscler Thromb Vasc Biol. 2012;32:1910-1916.)


Work conducted by Dr Gautam Vaddadi demonstrated impaired tightening of blood vessels in response to upright posture in patients with vasovagal syncope, with different findings in patients with low BP at rest and those with a normal BP. This understanding has lead the group to undertake a trial of the Noradrenaline prodrug L-DOPS in patients with vasovagal syncope. I have linked to the study below throughout this month. Here are some more details for those here in Australia who may be interested in participating.

Clinical and Neural Effects of L-DOPS on Low- and Normal- Supine Blood Pressure Variants of Orthostatic Intolerance.

We are looking for participants aged 18-50 who suffer from recurrent fainting or near fainting spells due to Vasovagal Syncope to participate in a trial investigating the benefit of a new medication - L-DOPS - in this condition. Participants will have either low or normal lying blood pressures. Participants will have had symptoms occurring at least weekly for ≥ 6 months. Symptoms include lightheadedness, weakness, blurred vision, fainting or near fainting.

Study details

The Human Neurotransmitters laboratory at Baker IDI has commenced a new study looking at the effect of a drug called L-DOPS in patients with Vasovagal syncope in association with either low or normal lying blood pressure. The study involves detailed examination of sympathetic nervous system function on two occasions in addition to clinical evaluations. The sympathetic nervous system, the stimulant arm of the nervous system is responsible for our "flight and fight" response to a threatening situation. The sympathetic nervous system is also crucial in the control of blood pressure and allows us to stand upright and supply blood to our vital organs, including the brain, in the face of gravity that pulls blood towards our legs. L-DOPS is a nerve transmitter precursor that is converted by the body to noradrenaline, the main nerve messenger of the sympathetic nervous system. We are studying whether increasing noradenaline by the use of L-DOPs improves physiological responses and symptoms in patients with these forms of orthostatic intolerance.


To be eligible for this study, you must:
  • be aged 18-50
  • have a disorder of Orthostatic Intolerance consistent with Vasovagal Syncope with either low or normal lying blood pressure
  • have had other conditions that could cause these symptoms excluded
  • be able to withhold medications that affect blood pressure for the duration of the study
  • be prepared to use appropriate contraception for the duration of the study
  • not be pregnant or breastfeeding
  • not be taking antidepressant medications
  • have no history of hypertension, heart disease, diabetes 
Patients with the Postural Orthostatic Tachycardia Syndrome (POTS) CANNOT be enrolled in this study.

What happens in the study?

During the study you will have two detailed assessments of your sympathetic nervous system, one at the beginning of the study and one at the end. These assessments take 4 hours each and involve invasive procedures such as the recording of nerve signals and the placement of a small tube in an artery and a vein in your arm.

Following an open label tolerability phase, the study will involve the blinded administration of the trial drug or placebo for 28 days each with clinical assessments at the end of each period. Further open label administration of L-DOPS is undertaken prior to the final assessment.
The total study duration is 4 months.

All study visits are performed at The Alfred Hospital, Commercial Rd , Melbourne.
Participants will be reimbursed for parking costs.


If you would like to participate, or would like to know how you can help, please email us at
For those unfamiliar, a short explanation of Dysautonomia can be found here.
One of the most famous people with a form of Dysautonomia is former Yellow Wiggle, Greg Page, who lent his name to a research fund at The Baker IDI, here in Melbourne, Australia. Donations can be made at The Greg Page fund For Orthostatic Intolerance.
And because many of us hope this research leads to us all feeling better, I give you Nina Simone's version of Feeling Good.

Monday 28 October 2013

Julia: Recovery. Dysautonomia Awareness Month

I've known today's guest poster Julia for a few years now. I've always been impressed by her sense of humour and determination, not to mention her amazing macaron baking skills. (Disclaimer: I may be somewhat biased by the fact that Julia rocked up to my room post-pacemaker surgery with a tin of freshly baked dark chocolate macarons. Yes, I can be bought with baked goods.) But this year Julia did something amazing, she ran 5km and raised $3,000 for POTS and OI research. As someone for whom walking to the end of my driveway is the equivalent of the Olympic marathon, I am still in awe of Julia's achievement.

Age 22, Full-time student of a Bachelor of Science
Started getting ill in 2006 but got dramatically worse 2009. Still ongoing.
Diagnoses: POTS, Migraine, Grave’s Disease, Fructose Malabsorption, Vit D Deficient and Hypermobility

I am a self confessed drug lover. I could not live without my drugs. My AFL team has been termed the drug team. I have a pill vile necklace (thanks Claire). I even have been known to study drugs in my science degree. I’ve even made drugs!!! Sure it was aspirin in a chemistry prac and I got a shocking yield AND we weren’t allowed to take any of it but I still made it!
My deep love for drugs doesn’t mean that every drug has been kind to me. I don’t think I have enough hands and feet to count the number of meds that have either done nothing, or their side effects made me worse off.

Of course, this dedication for drugs has to start somewhere though. Without my current concoction of pills I would still be Year 12 me, fainting up to 6 times a day struggling to make it to school. Now I am 22 and in my fourth year of university and recently completed the 5km RunMelbourne in a mere 38minutes 44seconds!!!! (My personal best and ONLY attempt of running 5km)

The run meant more to me than anything before. It meant more than my enter score, what uni I got into and any result since then!!

This run was my evidence of improvement.

I knew in my mind I had improved, but I never had solid evidence in a certificate and a medal to show it. Now I do!!

I signed up for RunMelbourne after my cardiologist had the idea to get a group of patients to do it and raise money for the POTS and Orthostatic Intolerance research going on (link below). I immediately agreed to do it and thought it was the perfect exercise goal. I signed up in November/Decemeber of 2012. That gave me just over 7months to get there. My original goal was to be able to run the entire way, but as I started to train my body started throwing hissy fits and so I decided it was unrealistic. My new goal was to reach the end and run across the finish line.

I started my training with the treadmill. My knees (which I have already dislocated twice) did not like this idea one bit. So there went that plan. I thought, what’s better than fresh air? So thought maybe actual running outside on cooler days could be a good idea. After only a few hundred metres of mostly walking (and maybe 3x10second bursts of running) and stopping to sit down twice I decided this was not going to work either. I consulted my exercise physiologist (EP) who suggested we try walking outside and the cross trainer for speed (as this would take the impact off my knees). This was my plan!

For the next 5months I cross trainer-ed 2-3 times a week, I walked just as much and I had EP appointments weekly to track progress and work on building a good running core and leg strength to cope with the impact of running. These EP appointments and my actual EP were more important than my drugs (which is saying a lot). The appointments kept my workout routine going by nudging that little guilt factor to keep training and my EP kept up my motivation. She knew I could do it, so I believed her and so I’d train as hard as I could, despite many ups and downs.

At the end of the 7months I raised $3000 for POTS and Orthostatic Intolerance Research at the Baker IDI and more importantly I ran at least 2km (in 200m bursts) of that 5km and got an awesome time AND didn’t actually pass out (just had to take a brief lie down at the finish line). If that’s not the start of recovery, I don’t know what is!

For those unfamiliar, a short explanation of Dysautonomia can be found here.
One of the most famous people with a form of Dysautonomia is former Yellow Wiggle, Greg Page, who lent his name to a research fund at The Baker IDI, here in Melbourne, Australia. Donations can be made at The Greg Page fund For Orthostatic Intolerance.
Information about one of the current research projects under way in Australia at The Baker IDI, can be found here.
And sorry I just couldn't resist, Julia. ONJ's, Physical was just too perfect :)

Friday 25 October 2013

Claire: My Mum - the importance of family and friends. Dysautonomia Awareness Month.

Claire is back today to discuss the importance family can play when you are dealing with a chronic illness like Dysautonomia. As the previous guest posts this month from family members have shown, illness doesn't just affect the one who's ill but the whole family. In turn for many of us we couldn't do it without the support from those nearest and dearest to us. (Special shout out to Claire who is competing in the Miss Camperdown Cruise this weekend. Good Luck, Claire!)

Age 29, Single with 3 fur kids (2 dogs, 1 bunny), nurse in previous life – currently volunteering in event first aid and dabbling in Millinery
Became ill in 2010/2011 but ill on and off for most of my life.
Diagnosis – Neurocardiogenic Syncope with Tachycardia, OI, Elhers Danlos Syndrome, chronic sinusitis, Endometriosis, asthma

Dysautonomia is a very isolating illness. Many of us had very active social lives before we got sick. Most of us were working or studying, some were playing regular sport or participating in other regular social activities. We enjoyed visiting friends and family, going shopping, going on holidays and doing whatever we felt like doing. Cue dysautonomia and it all vanishes, oh so cruelly, before our eyes. Friendships fade, family gets ignored (not on purpose), classes are missed or dropped and our physical capabilities make most sport an impossible dream.

In my belief, there are two reasons why Dysautonomia is called an invisible illness; firstly the usual meaning – there are often no outward signs of illness (we don’t look sick), but I would like to propose a second meaning – it is an invisible illness because we become invisible. We vanish from the scenes we were once part of, we drop off the map because staying there involves a huge amount of effort and stamina that we lack – we get forgotten about or overlooked. We’re all still here though, somewhere on the sidelines (often on Facebook), we’re still essentially the same person we were before we got sick, we still enjoy and appreciate the same things, we just have physical limitations now that we didn’t have before. So because of these limitations we become invisible, isolated. And because it is so isolating the importance of friends and family, care, support, persistence and understanding simply cannot be overstated - so this post is actually about my mum.

My mum is amazing. She is the second most amazing, inspiring, strong, determined woman I have ever met (after her mother, who just beat her at the determination stakes). My mum is a GP, an excellent GP, so her patients have been telling me for years and she is partly responsible for my finally getting a diagnosis. She is also a World Champion Dragon Boater, just throwing that in there!

So as you may expect, knowing all this, that she is amazingly supportive, helpful and understanding of my illness the majority of the time. It can be very hard to completely understand just what living with a chronic illness it is like if you’ve never had one but you know what? We don’t expect everyone to ‘get it’! Just making the effort to understand is more appreciated than you could know - and she tries her hardest to understand.

She has helped me in every way imaginable over the course of my illness and my long run of poor health that came before it and I can honestly say I would not be where I am without her – for starters I’d probably be living on the streets because the Disability Support Pension is embarrassingly inadequate.

Things like illness test relationships. They test people. They test faith, love, strength and character. But they are so much harder to face alone. It is said that the true test of a friendship is whether it endures the hard times as well as the good, which sucks because the hard times are when you need friends the most.

Everyone should have someone like my mum in their life, she’s awesome! But you can’t have her, she’s mine.
For those unfamiliar, a short explanation of Dysautonomia can be found here.
One of the most famous people with a form of Dysautonomia is former Yellow Wiggle, Greg Page, who lent his name to a research fund at The Baker IDI, here in Melbourne, Australia. Donations can be made at The Greg Page fund For Orthostatic Intolerance.
Information about one of the current research projects under way in Australia at The Baker IDI, can be found here.

And because Claire's mum likes Savage Garden, I give you Affirmation. Nice choice Claire.

Thursday 24 October 2013

Rachel: Sweet thing. Dysautonomia Awareness Month

Today I'm lucky enough to have another guest post from Rachel, who shall forever be known as The Wee Lady after her last fabulous post which allowed us all to find laughs in the otherwise depressing topic of urinary incontinence and/or retention. Go black humour, it's the only way to roll. Rachel articulates what many of us encounter, the gate-keepers. For better or worse, we are at the mercy of those who hold the treatments and sometimes no matter how well we play the game it doesn't always go in our favour. Or worse, hope is pulled away at the last minute due to circumstances beyond our control. For those of us with a progressive form of this disorder, "wait and see" is simply not a viable option.

(Okay so it's 'soup' and not 'lollies' but you get where I'm going, right?)

In the past couple of years, my care has been transferred from my Cardiologist, to the General Medicine department of our local hospital.  My General Physician is a specialist doctor who coordinates the other specialists who care for me and they all consult with him as the primary doctor who oversees my case.  In addition to the General Physican, I see a Neurologist, a Neural-Opthalmologist, a Gastroenterologist, a Cardiologist and a Urologist. They all see me through their out-patient clinics unless I happen to be admitted for something. I really like this model. 

Until recently, my Main Man (doctor wise, not to be confused with my Main-Squeeze, the delectable hubby) was a really lovely, really clever, experienced physician who was involved, interested and not afraid to admit that he needed to find out more. He wasn’t threatened by me, or my lists, my folders or my frequent email attachments.  He wasn’t even threatened by my six foot frame and it’s wobbly instability.  He understood that I wasn’t trying to be an annoying patient.  I was just trying not to be a patient at all. He suspected that I have AAG.  Autoimmune Autonomic Ganglionopathy.   The idea is that the immune system has turned against the Autonomic Nervous System in error.  It begins to pick off autonomic ganglia, preventing the usual messages from getting through, throwing out homeostasis. And this thinking meant that he was open to the idea of my problems being treatable.  That concept, for me, for anyone facing a progressive illness, is the equivalent of being a kid in a candy store..  It’s the nirvana of chronic illness. The delectable hope! Shiny, sweet gorgeousness!

But oh! There I was in the candy store, staring up at the jars, salivating. And it occurred to me that I couldn’t just buy what could make my dreams come true.  I didn’t have my little snap purse. The benevolent gentleperson with all the buying power was about to leave the store.  And he did.  The hospital moved him into another department and transferred my care to a new General Physician. One who hadn’t gone through the lengthy discussions with me about the candy and the possibility that maybe, I’m worthy of having a bag of bulls-eyes (plasmapheresis). My new Main Man prefers the sit-and-wait approach. Main-Squeeze and I at first, politely inferred; then, referred directly to the last doctor’s findings, suggested and finally pleaded for some more action, some attempt or nod towards trying.  He just took off his glasses, said we need to face some realities. Sat back and said that he would like to simply ‘watch’ my progression. Candy shop shut.

The research in this area shows that if indeed I have AAG, the nerve damage that continues to occur over time is unlikely to be able to be reversed.  So I don’t want to wait while he observes more progression.  I want to arrest the progression.  I need to, in point of fact.  Because, like all of my fellow sufferers, I have a life that I need to get back to. A husband who wants a partner in every sense of the word.  Children who need their Mum in ways and at times that I can’t always be there for them.  And a host of other brilliant things that are out of my reach with things the way they are.  Things that would have been, if I hadn’t got sick.  I’ve got some potential to fulfill.  And although the new Main Man doesn’t know it, I am worthy of the attempt.  Aren’t we all?  There aren’t very many of us.  It’s not like there’s going to be a mob looting that candy shop.  And we are very polite, on the whole.  Except for inside our imaginations, where occasionally, we slap people who don’t want to try to help.

I don’t have the antibodies which prove AAG.  In fact, 50% of AAG sufferers don’t.  But there is still a good chance that I would respond to immune modulation therapy.  So, I am standing in the candy store, alone.  Looking up at that candy.  Just wishing that this new doctor would come striding in and say “A bag of bulls-eyes for the little lady. Quick, now, don’t delay!  She needs them!” And maybe, you know, it could happen; he could make my dreams come true.

For those unfamiliar, a short explanation of Dysautonomia can be found here.
One of the most famous people with a form of Dysautonomia is former Yellow Wiggle, Greg Page, who lent his name to a research fund at The Baker IDI, here in Melbourne, Australia. Donations can be made at The Greg Page fund For Orthostatic Intolerance.
Information about one of the current research projects under way in Australia at The Baker IDI, can be found here.

Wednesday 23 October 2013

Thomas: The Proud, The Stubborn & The Musically Inconsistent. Dysautonomia Awareness Month

Well today's guest poster is another close to home, my eldest son Thomas. At 19 he's hitting those big milestones of moving out and starting his own life, whilst also dealing with a sick mum and the responsibilities that go with his being a carer. I am glad he can be honest about what it's like for him. The good the bad and the ugly. Chronic illness is a messy business, not just for those of us who are sick, but also for those that love us. Love my boys.

(When your son is a photography student you have the joy of surprise photos )

Mum is sick. There's no sugar coating, it basically just falls under the category of FUBAR. No matter how hard she pretends to be cheerful or optimistic, the only variant is the degree of shityness felt each day. Don't let those happy-go-lucky health ambassadors like Jim Stynes' family, or Olivia-Newton John fool you, being diagnosed with a chronic disease/disorder/illness is not fun. Its not going away and that sucks. It sucks because Dad works long hours to provide for us two and a half hours away all week and I'm left to fill his void around the house. It sucks because I become his figure to my brother, because I become the chauffeur of the family making sure that they all get to their appointments and school on time. It sucks because I have to plan my entire life around their commitments or exploits. It sucks because my friends don't really understand and don't get why I can't go out. It sucks when I'm balancing two jobs, cricket and family stuff all at once. It sucks, and I'm not fond of all the responsibility that tags along.

But I wouldn't change it for the world.

I love the fact that I am able to help out and actually be something useful. Maybe its because I've lived this way since I was 12 or 13, watched the decline in Mum's health till this day and it's now become just a way of life.

Who else is there that her or my brother can turn to for help? Who cares that my friends don't actually understand why I only get a chance to go out once or twice every month or so for a couple of hours. While they're out pissing away their nights, bitching about mundane things that are genuinely diminutive problems in the great wide world, I'm here with this more realistic approach to life that allows me to see past these "issues" due to the real problem that is Bob (the bastard), and that's not me being all snob nosed and looking down at these people because I love them with all my heart, but they've been brought up with pampering and kisses and I've never really had that.

I'm actually blessed that way.

The fact that I am able to spend so much time with my mother is something to be cherished. Kids my age view their parents as clothes washers, feeders and ATMs. Through mum's illness I have learnt how to be independent. On an off week, and yes, there are whole weeks when Bob comes in and sticks the boot in, it is up to me to make sure that the house is in order. Cooking, cleaning, washing, brothers schooling and most other domestic duties fall to me and through the beauties of being a bigger brother get delegated to the younger!

I have this habit of not telling anyone anything ever and it probably drives people insane. I keep a lid on if I'm feeling dodgy or hating something, instead, I throw on my work face (I work at a restaurant) and pretend everything is all bom diggity so there's no real "coping" that goes along with having a parent with chronic illness. It just is. Obviously I have certain vices such as music, photography and sports which offer me a slight distraction on occasion from the big, scary world but I think coping is sometimes thought of something other then just accepting a fact, because that's what I've done. Years ago I accepted that mum was chronically sick with basically no chance of recover and this responsibility of almost being a carer, had fallen to me. I don't resent it, I accept it warmly with open arms and through this, there's no issue, no worries and minimal stress.

I can be a fairly apathetic person a lot of the time so maybe that's seeping through here but I've stopped looking at mum as a sick person who needs looking after. Maybe it's because she's proud and stubborn and detests those "How's your mum doing?" "You're looking better today," comments that seem to pinch and contort every fibre in her being. I've watched her push that token help and concern away, instead, she would rather fight it and do something herself. I've watched how she and her parents interact with her illness (which is a taboo subject in their house, unless its commenting on her colour and its relative brightness.) I've watched friends of hers disappear because it's all too hard for them to deal with a sick person because they can't look past it and see that mum's still the same old gal. She doesn't want your pity or or condolences. She just wants you to understand and realise that she is not 'Dysautonomia'.

She's still a loving person. She's still a caring friend. She's still my mother. She's still a beautiful woman. She's still smart as all get out. She's still creative. She's still inspiring. She's still a dag. She's still way too obsessed with The Walking Dead. She's still got an eccentric taste in music and I'll never, ever forgive her for trying to convince me that Candy by Iggy Pop is even slightly, in any shape or form, a decent song.

Just a quick tangent, I will take this moment, to publicly apologise to her about the fact that I gave her stick about Hallelujah by Jeff Buckley for years (I know, blasphemy!) and now, have it sitting in my Most Played playlist on iTunes as well as know how to play it on guitar. Sorry for giving you grief about it mum.

But as I sit here, putting the jokes aside, typing this with The Rolling Stones playing way to loud in the background and have mum walk in and ask me to remind her she's had her Florinef today because it's one of "those" days, I sit and think about the future. In two or three months I'm out - given the boot. The folks are leaving for pastures new and I'm left to find my way on my own as I attempt to make it at university starting in March.

One thing got to me though. Through the excitement of new adventures and individuality and adult life, something I've always wanted since the totally unfair rulings and groundings I received a-plenty in my younger years, guilt started to creep through that bubble of pure, youthful excitement. Guilt that I won't be able to help out anymore. That all the responsibility I've had for all this time and grown accustomed to, will fall to my much younger, in both age and personality, brother. I am a safety net that has always been there, something mum and Liam could count on which will suddenly cease to exist in the effective blink of an eye. I feel terrible with the fact that I feel like I'm deserted them. The irony is though, mum and dad feel the exact same way about moving away from me. I told mum about it one day and watched it physical hurt her and that just added to it all. I know I'll be ok next year, they should know that. This whole year I have been saving dollars and dimes to make sure of that. But it's them I'll always think about and that won't change.

We'll just have to wait and see how it all pans out.
It'll work itself out.
It always does.

Bob is that bastard that crashes on your couch and never ever leaves. He's that buzz kill at the party who says the musics too loud. He's that guy that bombs all your photos. He's that sleaze that hits on your mum at your wedding. He's the bloke that chews with his mouth open and has phone calls on the train. He's a guy who flies in dressed up all like a union jack and says, I've won five pounds if I have his kind of detergent pack.
And he's here to stay.

But like a bad smell in the room we pretend he doesn't exist and continue existing in our own dysfunctional form of normality. I love my mother. I truly do and hope that one day she'll get better. But until then I just hope she gets a better taste in music.

Please excuse my rambling, it's been a while since I've written anything.
Peace and Love,
For those unfamiliar, a short explanation of Dysautonomia can be found here.
One of the most famous people with a form of Dysautonomia is former Yellow Wiggle, Greg Page, who lent his name to a research fund at The Baker IDI, here in Melbourne, Australia. Donations can be made at The Greg Page fund For Orthostatic Intolerance.
Information about one of the current research projects under way in Australia at The Baker IDI, can be found here.
P.S. So mum likes to end her posts with a catchy tune to reflect the mood of her piece so I'd like to do the same and dedicate it to our main man. Bob, this goes out to you.

Tuesday 22 October 2013

Stephanie: From challenge to hope and giving back. Dysautonomia Awareness Month

Today's guest poster is Stephanie. Stephanie is a woman after my own heart, having gone into counselling as a profession. I love that her journey to diagnosis has led her to a career helping others who are negotiating the same, often confronting and confusing, path. Lets face it we all need help processing living with this disorder and who better to understand than someone who has tread that path themselves. Go Stephanie. 

Well I suppose the best place to start is with my name. I'm Stephanie I'm 26 and from Melbourne. I have had Dysautonomia/POTS and Fibromyalgia for 10 years now but only diagnosed for 5 years. I can't believe it has been that long but some days it feels as though I have never lived any other way then chronically ill.

The theory is my condition developed from when I was 16 and seriously ill with viral meningitis. I spent weeks coping with the virus and was fully expected to recover without any flaws. Boy was I wrong!!!! It took my mother and I several weeks after my virus to realise that something was seriously not right. I wasn't merely exhausted from minor activities I had begun to collapse at a moments notice with palpitations, sweating, abnormal temperatures, pain, migraines and more, as you can all attest to.

Our first port of call was a man that dealt with chronic fatigue syndrome (CFS). I remember being frightened, skeptical and in an enormous amount of denial. I had never meet such a proactive doctor before and was thus convinced that my body had undergone some major trauma when fighting the meningitis. I was fully trusting and was happy to do what he suggested, as I didn't know any better. After some time I was observing that my condition wasn't moving in the right direction. I was not only collapsing but was experiencing seizures as well. I needed a new doctor. So as I am sure some of you have gone through the same path, with the ever ongoing and stressful search for a medical professional to listen, acknowledge and understand. My search was an exhausting one but I am pleased to say that I am content where I am at this point.

My diagnoses was quick, my doctor went through my history and did some basic tests and boom I was hit with the news that I was suffering from a condition called Dysautonomia and POTS. The moment was bitter sweet and a huge mixture of emotions. I was relieved, angry, sad, confused and most of all I was tired. Tired of my body and at this point my mind wasn't in a very great place either. I would probably say my mental state has been one of the biggest hurdles with this condition. It takes constant checking and realising that I am who I am and don't need to justify myself or my condition. Looking back I am not surprised at my reaction as I feel many of us have experienced similar.

I still suffer from the many symptoms that are associated with this condition and struggle to find a viable treatment so am working on Midodrine and a symptom based treatment approach for the moment along with my doctor. After 10 years and still trying to find my feet I have to say my mind set is 90% of the time positive and pulls me through, amongst other things. My spiritual and buddhist background also supports me in being content with my life and working to help and support others. So I put myself through a qualification in counselling and am now passionate about supporting our community of people living with a chronic illness physically, emotionally, psychologically and spiritually. My hope is that the future brings us closer together so we can shine even amidst our challenges.


For those unfamiliar, a short explanation of Dysautonomia can be found here.
One of the most famous people with a form of Dysautonomia is former Yellow Wiggle, Greg Page, who lent his name to a research fund at The Baker IDI, here in Melbourne, Australia. Donations can be made at The Greg Page fund For Orthostatic Intolerance.
Information about one of the current research projects under way in Australia at The Baker IDI, can be found here.

I love Katie Noonan, her voice is just liquid beauty. And this song fits Stephanie's post as we all need to breathe in now so we can shine. 

Friday 18 October 2013

Kate: Maybe I’m not as sick as I actually am? Dysautonomia Awareness Month

Today's guest poster is another from the Apple Isle, Tasmania, Australia. Kate is yet another patient with a kickarse sense of humour who I've been lucky enough to get to know. (I'm starting to detect a theme here. Could sarcasm and cracking sense of humour be another symptom of Dysautonomia? Up there with crazy blood pressure and a need to frequent foul public toilets when out?) Kate gives a great insight into the contradictory and complex thoughts we have when trying to understand our bodies and this whole illness malarkey. Thanks Kate.

Kate is a 31 year old Taswegian. She has Joint Hypermobility Syndrome (AKA Ehlers Danlos Syndrome hypermoobilty type) fibromyalgia and OI/POTS. She lives with her husband and fur and feather babies.

At first I didn’t think I was legitimately sick enough to post here. I seem to keep battling with the idea that maybe I’m not as sick as I actually am, which is nonsensical. I mean really, this whole illness is like living in Alice’s wonderland. There is a photo record, spread amongst my friends and family, of a lanky, very often sleepy, Kate. There is actually a bit of a joke that if there is a photo of me, it’s likely to either be me lying down, or looking like I’ve just been woken up. However, there is this other photo record, one of me on horses, bushwalking and traveling and nursing and volunteering in developing countries. Just when you think you know who you are and what you are capable of, and how you appear to others, it gets turned on its head and you become this pain filled, sleeping zombie.

Sleep, long, coma like, all engulfing sleep. Actually, the pain and the fatigue have always been there, but somehow the internal resources to overcome them were also there. But your body can only take so much. What was weeks of being confined to the house or short trips from the house has turned into months, nearing a year. I have managed, time and again, to crawl from my zombie lair and re-enter the world, push through the pain barrier to get to the next thing I’ve been dreaming of. But right now, for the first time, I have to put big things aside.

You start to develop a bit of a narrative about your life…and your mental health with this illness. Sure, I was a bit of a depressive teenager. I struggled in high school to concentrate and would come home from some outdoors outing and sleep for days. I had panic attacks starting in grade 12 after getting chicken pox. I knew it wasn’t in my head, that my body was failing me, but there was always that niggling thought “if you just pushed that bit further...maybe you would break through some invisible barrier and have energy, have no pain, maybe I’m not as sick as I actually am”.

The amount of times I have tried to get fit, gah, only to be doing relatively well and then step over a cliff and go into free fall. One day standing up is pleasant and easy and actually amazing, the next day you stand up and it feels like your heart is going to take off through your chest and your guts are falling through the floor. It would tie anyone’s head in knots.

The day I finally saw a doctor who explained what was happening to me, it was like my head popped out of the labyrinth and everything was clear. I could finally stop wondering around in a nightmare of questioning if I had created my own freakish reality. I can now name when my body is doing its thing, and I can call it when my head is maybe not in the best place. It makes all the difference. It might not put me on plane to Bangladesh, but it means I can wake up in the morning and be a bit more ok with whatever happens when I stand up.

For those unfamiliar, a short explanation of Dysautonomia can be found here.
One of the most famous people with a form of Dysautonomia is former Yellow Wiggle, Greg Page, who lent his name to a research fund at The Baker IDI, here in Melbourne, Australia. Donations can be made at The Greg Page fund For Orthostatic Intolerance.
Information about one of the current research projects under way in Australia at The Baker IDI, can be found here.

For many of us we are still processing this whole sick business, sometimes we get it right, sometimes not so much, and sometimes it is still all a bit perplexing and that's okay. We're all getting there. I coudn't resist this song by Sarah Blasko (particularly with the horse in the clip).