Tuesday 30 October 2012

Golden Girls for the Win!

I grew up watching the Golden Girls in the 80's and was always drawn to the sharp and dry sense of humour, of Dorothy, played by Bea Arthur. So it seems rather apt that the character of Dorothy should should have a story line that would mimic my life nearly 20 years later.

This video has been making the rounds again on the chronic illness boards and with good reason. Although this episode of the Golden Girls screened way back in 1987, it continues to be relevant and representation of what many of us go through in the search for answers today*. Whilst Dorothy is eventually diagnosed with Chronic Fatigue Syndrome, this video is for anyone with a complex and poorly understood disorder.

I think that last cathartic scene in particular, is what many of us want to have. Maybe I should send this to Dr Arsehole who first told me it was all in my head? Dorothy is far more articulate, and uses less expletives than I probably would in the same circumstances.

Michelle :)

*Susan Harris the creator of The Golden Girls, was diagnosed with Chronic Fatigue Syndrome whilst writing the series. That personal experience definitely shines through in this episode and explains the authenticity and timelessness of this piece. Something which is often missing in other depictions of illnesses on the big and small screen.

Sunday 28 October 2012

Dysautonomia: What do you need to know in five minutes or less?

Like a lot of other patients I spend most of my life explaining Dysautonomia and correcting inaccuracies. It seems like an endless chore. From how to spell it, to what the hell is it, I have explained it more times than I can count. After a particularly whingey, "why don't people understand?" type of day, Mr Grumpy pointed out that I should simply do a Dysautonomia for Dummies post that clarifies some of the major points in less that five minutes. So here goes:

What is Dysautonomia?

Dysautonomia is an umbrella term for a collection of disorders that affect the Autonomic Nervous System (ANS). The term 'Dysautonomia' is akin to the word 'Cancer'. There are many forms of cancer eg breast, brain, ovarian. Similarly there are a many forms of Dysautonomia, for example:

Neurocardiogenic Syncope/Neurally Mediated Hypotension (NCS/NMH)
Postural Orthostatic Tachycardia Syndrome (POTS)
Orthostatic Intolerance (OI)
Orthostatic Hypotension (OH)
Pure Autonomic Failure (PAF)
Multiple Systems Atrophy (MSA)
Baroreflex Failure (BF)
Then there are those like myself with clear autonomic dysfunction who don't quite fit into any single subgroup.

Terms and diagnostic criteria change as knowledge evolves. The latest criteria for POTS, IST and VVS (2015 Expert Consensus Statement by the Heart Rhythm Society) can be downloaded from here.

Familial Dysautonomia (FD): this is the only form of Dysautonomia with a clear genetic origin and is almost exclusively seen within the Ashkinazi Jewish populations.

There are also many other disorders that may have autonomic involvement eg Parkinson's disease.

Dysautonomia can also develop following traumatic brain injury.

The two words that may best describe Dysautonomia would be variable and unpredictable.

What is the Autonomic Nervous System (ANS)?

The ANS is the body's autopilot and is responsible for maintaining homeostasis, or simply put, keeping our body stable. It controls all the unconscious bodily functions such as, heart rate, blood pressure, breathing, digestion, temperature regulation and even how our pupils react to light. When this system malfunctions or fails you develop Dysautonomia. It is further separated into the Sympathetic (excitory) and Parasympathetic (inhibitory) Nervous Systems, which at their simplest work in opposition to each other to maintain homeostasis, although there are times that they work together. The Enteric (gastric) Nervous System is also sometimes included as part of the ANS. For a more in-depth explanation of the ANS, click here.

No two patients experience Dysautonomia the same. 

Even when two patients have the same diagnosis eg POTS, their experiences may differ greatly. Some patients have very mild symptoms and can continue their daily life as normal. Yet others may be totally housebound and reliant on others for aide with daily tasks eg showering.

The combination of symptoms a patient experiences can also differ. The ANS controls a wide variety of bodily functions. As a result one patient may have issues with heart rate and temperature regulation, another may have additional issues with blood pressure and digestion. Depending on what areas are affected and to what degree, this will influence the symptoms that a patient presents with.

What medications work well for one patient may do nothing, or cause horrendous side-effects for another. There are a core group of medications that are commonly used in Dysautonomia patients, however it is often a case of trial and error to see what works for each patient. Not only with type of medication, but also dosage.

What causes Dysatuonomia?

Causes are varied and include: viral, mitochodrial diseases, connective tissue disorders, neuropathies, autoimmune disorders, genetic disorders, neurotransmitter dysfunction. It is important for patients to attempt to uncover their underlying disorder as if treated they may reverse, slow, or control the autonomic symptoms. In many cases an underlying aetiology may remain elusive despite extensive testing.

Many patients also have a variety of comorbid medical conditions eg diabetes or thyroid issues which complicate both diagnosis and treatment. These may be pre-existing or develop over time.


There is no single treatment that will work for every patient. In general, treatment involves an individually tailored program which may include variations of medications, lifestyle changes and diet, and a graduated exercise program.

This program will generally be dictated by the symptoms a patient experiences. For example, if a patient has tachycardia (fast heart rate) they may be prescribed a beta-blocker, which slows down the heart rate. If a patient has low blood pressure they may be prescribed fludrocortisone, which increases blood volume.

In general, patients require an increase in both their salt and water intake. A change to eating patterns in the form of small, frequent meals, are also recommended to prevent blood pooling in the gut. Patient's may also require aides such as medical compression stockings to prevent blood pooling in their legs, and items such as shower chairs to help prevent fainting in the shower. Graduated exercise, particularly reclining exercises and lower limb strengthening, are also necessary as deconditioning can occur rapidly in most patients.


Like symptoms and causes, long term outcomes vary. Some patients will recover, especially if younger and if their symptoms began after a virus. Some patients, will have a stable but chronic pattern. Some will have a relapsing remitting profile similar to MS. And yet others will progress over time.

There is currently no cure for Dysautonomia, although in some cases if the underlying cause is discovered, treatment of that condition may alleviate the autonomic symptoms.

It is important for family members and friends to understand that a patient's symptoms may vary day-to-day and hour-to-hour. As such, what they may be able to do one day, is impossible the next. For example, going to a cafe with friends may be possible for a couple of hours one day, but the patient may be unable to do it another, or have to cancel at the last minute. Additionally, that simple outing may place some patients in bed for the next week.

Patients aren't crazy or lazy (just two of the terms that are frequently thrown at patients), they are just dealing with a complex, often scary, and frequently unpredictable illness that most people, both in the medical field and wider community, have little to no knowledge.

What's it like to live with day-to-day?

This blog is a history of my experience with Dysautonomia over the past ten years. From diagnosis to treatment, coping with change and the medical system, you can get an idea of the day-to-day by clicking any of the tabs above. But for a short glimpse into life with this illness you can check out

Dysautonomia. Invisible Illness My Arse!

Links for more information.

DINET (US site)

Vanderbilt Autonomic Dysfunction Centre (US Site)

Syncope Trust And Reflex Anoxic Seizures (STARS: UK site)

Dysautonomia International (US site)

Dysautonomia Information Network (DINET: US site)

Dysautonomia Advocacy Foundation (US site)

The Dysautonomia Project (US site)

General Information on Orthostatic Intolerance

Michelle :)

You'll find most patients develop a rather warped sense of humour as it's far better to laugh than dwell on the difficulties we face. In that vein, I give you my life motto as sung by Monty Python.

Thursday 25 October 2012

I don't 'heart' my body, but I do 'heart' me.

My body sucks. It really does and I don't see anything wrong in saying that. It's broken and it continues to break. It has very few redeeming qualities, and really needs either a good kick up the arse or to be put out of it's misery. But I'm pretty okay with that. It is what it is, and nothing I do is going to change it. My body will continue to be an arse, because really it is the one thing it does well. But I'll be buggered if I am going to love it.

I am over being told I must 'heart' my body. That I must focus all my energy on this lump of flesh, that has arisen thanks to the crap shoot that is genetics and life. Of being told how I must relate to it. Of how I must embrace my wrinkles, my love handles, my saggy boobs etc. I am over being told what a real woman is. Real women have curves? Well shit, I'm obviously not a real woman with my minuscule mammaries and underweight body. Big boobs are in. Big boobs are out. It's about the bum, legs, ears, eyelashes, blah blah blah blah. Accept your body and all it's flaws. Love those flaws. Be a 'real' woman. Love your body, Dammnit! Love it NOW.

Bite Me! 

I don't love my body, but that's quite okay as I am not my body. 

I am not what you can see, or with the joy of chronic illness, what you can't see. My worth doesn't come from this broken lump of flesh. I don't care whether anyone thinks I'm sexy or hot. Whether I meet some continually changing ideal of a perfect or imperfect aesthetic. I don't care how you think I should feel about my body. My physical body doesn't rate highly on my personal schema. It is part of me, but it is not all of me, and it sure as hell doesn't define me.

This body of mine, healthy or not, is going to change with time. 

It will never look like what is shown in the magazines. 

It will never look like The Real Women campaigns.

It will just be.

And that is okay.

I reserve the right to hate my continually breaking body and the real world consequences of what happens each time it breaks in a new and frequently, disturbing way.

Because my value is not defined by this corporeal form.

I quite like the 'Me' that exists within this dodgy packaging.

Not despite of it. And not because of it.

What matters is how I treat others and how I interact in the world. My body has nothing to do with that.

What matters is whether or not I leave this world a better place when this dysfunctional lump of muscle and bone finally expires.

What matters is whether I can find joy and laughs no matter what this arse of a body throws my way.

What matters is compassion and tolerance and being in the world in a way that brings even a moment of light to others.

What matters is my spirit, or my soul, or whatever you want to call those intangible bits that make up the true essence of you.

What matters is being a decent human being. And that sure as hell is not dependent on whether I love or don't love my body.

I am not my body.

I will not limit myself and my possibilities, by focusing on a lump of flesh and bone.

I am me, and I heart me. 

My body on the otherhand can go self-fornicate.


I may or may have not been a little inspired just a tad by the fabulous and straight talking, Kelley of Magnetoboldtoo.

Friday 12 October 2012

Everybody Needs A Team.

Like most patients it took me a long time to get from my first symptoms to a diagnosis. I saw multiple doctors, had multiple delightful tests, and gave my body weight many times over in blood and pee samples. I thought once I found the right doctor and had a diagnosis, I would find a quick treatment and be back to normal. Oh to be that naive again. Even after diagnosis the increasing complexity and changing nature of my symptoms has made my treatment difficult. A quick review of any patient forum shows I am not alone. We are a complex bunch and for many, effective treatment remains elusive.

The Autonomic Nervous System is spread out throughout the body from head to toe. It innervates multiple body systems and multiple organs, which in turn means we can have many and varied complex symptoms, which can change on a daily basis. Add in that many patients are contending with multiple other illnesses on top of Dysautonomia and we are one complex and puzzling mess to manage.

Five minutes in any Dysautonomia support group and you'll find clusters of illnesses and disorders: Ehlers Danlos Syndrome, Mast Cell Activation Disorder, Degenerative Disc Disease, Rheumatoid Arthritis, Endometriosis, Complex Regional Pain Syndrome, variations of neuropathy, diabetes, thyroid issues, migraines, the list goes on and on.

Between the diagnoses directly related to autonomic dysfunction and the many comorbid conditions that seem to cluster with Dysautonomia, diagnosis and treatment can be confusing. As patients we need to move from the idea of a single doctor to treat us, and each develop our own team of doctors and other health professionals, specific to our individual needs.

Often we hope that once we find a Dysautonomia specialist we will find someone who can treat all our various issues. The reality is that one doctor, whatever their speciality, is highly unlikely to be able to deal with all our complex and confusing symptoms. Specialisation means that doctors are experts in discreet fields with only a cursory or general knowledge of other specializations. Even within speciality, most will specialise in specific diagnoses or areas of treatment. Eg one neurologist may specialise in movement disorders, another in stroke, yet another in epilepsy. As such, unless your presentation is simple or symptoms mild, a single doctor is unlikely to be able to cover all your care needs. Instead you need to turn your mind to developing your own specific team to manage your care.

As patient's we need to advocate for ourselves and assemble a team of health professionals to meet our specific and often changing needs. This is not always an easy process and can take months or even years, before you finally create a team with which you are happy. There may be team members who are only needed on a one off, or infrequent basis, and others that are more central to your team who you will see on a regular basis. You may also need to introduce new team members as new symptoms appear, or remove members as symptoms stabailise, or resolve.

Finding that one doctor who not only believes you, but understands the condition, can be the hardest step. I saw a large number of doctors before finding my current Cardiologist, who is both my primary specialist and coordinator of my care. I had many disappointing appointments and wasted much in the way of time, money and sanity, in dealing with a system that failed to recognise my symptoms or place them in the correct diagnostic category.  However, I was lucky that I had a fantastic General Practitioner (GP) at the time and she not only believed me, but was willing to work with me to find out what was going wrong with my body.

I cannot stress enough the need to find a GP that you can work with and trust. In many ways this one doctor will be central to your ongoing care and well being. Your GP will be your first point of call for many aspects of your day-to-day healthcare. They can coordinate referrals and help manage your medications, blood tests and investigations as well as regular health needs. When you have a complex condition it is important to have a regular GP who is familiar with your condition and all it's quirks. When you have Dysautonomia, your normal is quite abnormal to that of regular patients eg I frequently have no discernible peripheral pulse. Concerning in a normal patient, but a cause for a shared laugh with me. Having to explain this to multiple doctors unfamiliar with your condition can be exhausting and distressing. For example, a regular cold can exacerbate autonomic symptoms, and a reduced immune system can lead to secondary opportunistic bacterial infections developing rapidly. Without fail my simple cold will turn to a chest infection, my GP knows this and a quick antibiotics prescription, rather than a wait and see approach, has avoided much in the way of hospital visits. A GP unfamiliar with my history would be unlikely to be so proactive, something I have discovered in the past and led to a worse infection and longer recovery.

The likelihood of finding a GP who is familiar with any forms of Dysautonomia is highly unlikely. However, if you find a GP who you are comfortable with and with whom you have rapport, you can provide them with information on Dysautonomia. Create a package of the key articles from reputable journals, that you can give to your GP to update them on the latest research and treatment options. A good GP will be willing to learn about Dysautonomia, your medications (eg Midodrine is not a regularly prescribed medication and few GPs are familiar with it's uses) and keep up to date with all your specialist letters. They will also liase with your various specialists at need, and take direction on your care. They will be willing to work with you on your care and know that in many ways you, the patient, are the expert. When you find that GP hold on and don't let go. They are like gold. I would also suggest finding a back up GP at the same practice for the times when your regular GP is away or unavailable.

Once you have a GP you need to find a Dysautonomia specialist. Depending on where you live this can be difficult. There are listings of specialists available on some websites, but these are not always comprehensive or up to date. Often it is easiest to go onto one of the many patient forums and ask if anyone knows of a good specialist in your area or country. Depending on your presentation and issues such as rapport, you may need to see a number of specialists until you find one you are comfortable to work with. Specialists also differ in their approach to treatment and theories of causality and the types of investigations they will do. It is okay to say it's not working and ask for a second or even third opinion until you find the specialist that is right for you.

Most commonly your primary treating specialist will be from one of two specialities, Neurology or Cardiology. Often the choice of primary specialist will be determined by your main presenting symptom. Eg if your primary symptom is tachycardia or bradycardia, then you will likely be sent to a Cardiologist. If you primarily have migraines, cognitive issues or changes in sensation you may be sent to a Neurologist. Whichever speciality becomes your primary, this person will coordinate the majority of your care, including testing, treatments, and referrals to other specialists.

However, the complexity of Dysautonomia and the involvement of many body systems means you may need multiple specialists. For example, if you have gastric symptoms such as gastroparesis or IBS you will need a Gastroenterologist, if you have insomnia or hypersomnia you will need a Sleep Specialist. As such every patient's team will vary according to the type of symptoms they are experiencing. Most doctors specialising in Dysautonomia will develop a team of fellow doctors from varying specialities who also have knowledge of autonomic conditions, and to whom they can refer their patients for other specialist care.

The other issue to remember is that it is easy to attribute all our weird symptoms to Dysautonomia. However, new symptoms should always be checked out as they may be unrelated to your autonomic issues and more importantly may be treatable and in turn improve your autonomic symptoms. Appropriate treatment of issues such as hay fever or even pain, are known to help manage autonomic symptoms. Appropriate management of other comorbid conditions may also lower overall disability and improve health and functioning. All of which leads to a better quality of life.

To give you an idea of what your eventual team may look like, this is my current team:
  • A regular GP 
  • A Primary Cardiologist who is a specialist in Dysautonomia and coordinates the majority of my care. We've been together since 2007.
  • A Primary Neurologist who is a specialist in neuromuscular neurology and electromyography
  • A Gastroenterologist with knowledge of autonomic conditions.
  • A Dietician to direct my diet and manage my complex food allergies and intolerances and gastric issues.
  • A continence nurse
  • A continence physiotherapist
  • Urologist
  • Neurogeneticist
(At times it has also included a back up GP (still searching for that one at the moment) a sleep specialist, a physiotherapist, an allergist, a dermatologist, physiotherapist, social worker, occupational therapist, a variety of neurologists and neurophysiologists.)

I see some members of my team regularly. Others I see on an at need basis. But I now have a group of health professionals who can manage my symptoms and address my health care needs. And most importantly I have a group of health professionals who I trust and who know my case.

Your team may look very different to mine, as it will reflect your specific health needs, but it gives you a general idea of how it may eventually look. It takes work to develop a good team, but it is worth the effort.

Michelle :)

Wednesday 10 October 2012

Recycling, Re-purposing, Reviving.

After a particularly delightful pain menage a trois, involving a three day migraine, popped jaw and zapping foot, I have been having a little trouble finding my happy place. Even I was beginning to be annoyed by my pathetic moaning and mopey self. So today I decided to say "No more!", and force myself to snap out of it.

And what do you do to snap out of a pain-filled funk? Why you finally get around to the craft project you've had in mind for months but somehow haven't managed to pull your finger out and complete.

I have a bit of an addiction to tins. I know, I know. Mr Grumpy thinks I'm nuts too, but I can't resist a cute tin. I have even been known to buy a product simply because the tin is pretty. Sometimes even when I didn't want the product inside.
Okay so these have chocolate inside, so maybe, I kinda, sorta, wanted what was in these ones.

Some tins don't need to be altered as they are already decorative.
Two of the many tins I have plans for. The red Carbonell will remain unchanged. These make perfect and lovely plant pots. Whip off the top with a can opener, hammer in a few holes in the bottom and voila! you have a decorative pot. I have a number of these on my front steps and they look fab. Bonus is they cost me $0. I buy them for the olive oil anyway. The free pot is simply a bonus.
Some like the green Bertolli tin, get the same treatment but end up painted like my red tins above. A can or two of red spray paint. Some home made stencils (I draw them on book contact, cut them out and stick them on the tin). A contrast tin of spray paint. And lo and behold, four unique and very hardy plant tins.

But today's project was much less involved and more in line with my exhausted patheticness.

My love of coffee is no secret. I start every morning with two double espressos to get my bp and hr up. This has lead to quite a collection of coffee tins, much to Mr Grumpy's annoyance. What he, my children and probably even my dogs, don't understand is that as soon as I saw these tins I had a plan. It only took me a year to get around to it.

These glossy black Vittoria tins have been sitting in the top of my pantry gathering dust, waiting for me to pull my finger out.  And finally, today, I did.

Mr Grumpy and the youngest hammered the holes and added little wire handles for me (with minimal eyerolls at my insanity), as my Muppet arms aren't quite up to that.
I have had this sad, broken, grass-infested, plastic pot of succulents sitting waiting for some TLC for some time. The succulents inside were a gift from a lovely family friend, June, who has now passed away, and I have wanted to re-plant them for ages. June had the greenest thumb of anyone I have ever known. There was nothing she couldn't grow and her garden was always glorious. She also made lovely cakes and biscuits. I'll always remember sitting as a child in her loungeroom, eating fresh ginger snap biscuits and sipping tea from proper china cups. She was a lovely lady and my mum's best friend. Miss you. June.

What started as one small plant in a little plastic dish has ended up spawning dozen of pots overflowing with tight green rosettes. These look spectacular when the tall flower stalks spring up with their handful of little orange and yellow bells.

This is an old dip tin from a farm in the area where I grew up. I have a few of these recycled around the yard and they make fabulous pots when lined with some old fly wire (we have a lot of this thanks to the dogs ripping our fly wire doors to shreds to get back into the house).
 One piece of this succulent will give me a dozen new plants.
 So pretty.
And 20 minutes later I have four new plants in black shiny tins. Recycled and re-purposed tins. Cuttings from a plant I already own. Even the potting mix is from my compost. $0 spent, apart from the tins which we would have purchased anyway for the coffee inside.
 One on the door of my famous fashion shed door.
Another three in a line down the side of the shed.

Not bad for about 30mins work. The glossy black tins look quite good against the greens and greys in the garden. And despite aggravating the migraine that I had only just managed to beat into submission, and feeling absolutely knackered, and in need of a nanna nap, I'm pretty damn happy right about now.

Michelle :)

Monday 8 October 2012

Person First. Patient Second: An Open Letter to Health Professionals

Dear Health Professional,

I am a person.

I know it's shocking to some of you, but it's true.

I was even one of you, before illness came knocking at my door.


I am not a body part.

I am not a set of test results.

I am not patient number five for the day.

I am a living breathing human being.

I have a life.

I have hopes and dreams.

I have fears.

I have a family who are equally affected by my illness.

I cannot turn it off.

I must live with the impact of illness every hour of every day.

When I step out of your office my life continues.

My piss poor health continues.

I cannot detach.

No matter how much I may wish it otherwise.

I am an informed patient.

This is my body and my life.

I am invested in finding a solution.

I am invested in understanding my body and why it is breaking.

This doesn't mean I don't value your opinion. That's why I'm here after all.

My knowledge and investment are not a threat.

They are a tool you can use.

If you are open.

I am not two and you do not need to speak to me like I am incapable of understanding what you are saying.

If it is complex, take the time to explain it in lay language. Use pictures, or at the very least give me a handout.

I know your job is difficult.

I know that some patients are complete douche bags. Being sick doesn't instantly make you Mother Teresa.

But don't treat all patients as if they are the enemy.

Douche bags, although difficult and memorable, are a minority not the majority.

I understand that you need a certain level of detachment or the sheer weight of human misery you see each day would crush you.

But please look me in the eye.

Please listen to what I say.

I came to you with hope.

I came to you with the knowledge that you are an expert in your field.

I came to you to help me.

I will respect you more if you treat me like a person.

I will be more compliant if you treat me like a person.

Be honest.

Say you don't know.

Refer me on.

Such honesty makes it highly likely that I will trust you.

Such honesty makes it highly likely I will come back to you again.

I don't want platitudes.

I don't want disdain or sarcasm.

I don't want to feel like I am an inconvenience.

That I need to be rushed out your door.

Show me that I have value.

That my health is important to you.

See me the person, and I will see you as a person too.

Respect is a two way street.

I want this to work.

I want to feel better.

Together we can do this.

I'm willing.

Are you?

Yours sincerely,

Michelle the person, who just happens to also be a patient.

Wednesday 3 October 2012

5 Tips for the Newly Diagnosed Dysautonomia Patient.

Dysautonomia has been a major part of my life for the last eight years. What I have recently realised is now the majority of my 30's (yes, I'm slow on the uptake). Those early days were scary. Even as a well educated woman, working in health care at the time, I felt alone and overwhelmed  Not a experience I would wish to repeat or wish on anyone else.

Whilst, it is now easier to get clinical information about the various subtypes, diagnostic testing and treatments, it is still the information about what actually living with Dysautonomia is like, that is still lacking. And a quick scan around the forums tells me that many of my early experiences are still being repeated with patients all around the world.

So what do I wish someone had told me right back at the beginning? So many things come to mind, but these are my top 5.
  1. You're not crazy.
If I had a dollar coin for every time a fellow patients said, "my doctor told me I was just anxious", well I'd have a really large pile of sparkly coins which are too heavy for my arms of patheticness to carry. Intellectually I knew that I wasn't imagining my symptoms, and I knew I didn't have a mood or anxiety disorder. Yet, the words "it's all in your head" said by one callous doctor, sat in the back of my mind long after I had my diagnosis. Damaging words, and it took a long time to work past that self doubt, even when I had clear test results that confirmed my diagnosis. It's hard to admit that, but it's the truth and it's taken a long time to take my power back from that one cold medico.  I've written about the conundrum that is the ANS and psychiatric diagnoses before so I wont rehash it here. But I want you to know that YOU'RE NOT CRAZY.

Dysautonomia is a difficult collection of illnesses to understand. It is unpredictable and frequently undetectable, by the standard battery of investigations. Symptoms wax and wane. We have a good day followed by a bad. What we could do one day we can't do the next. The permanent Fight or Flight response we live with, leaves our body on permanent high alert. We startle easily and over-react to any stimuli, be it anything from sound to fragrance. And the ultimate joke, is that the brain fog that plagues us thanks to poor cerebral profusion, means we are often unable to articulate exactly what we are experiencing. Search for a doctor who understands Dysautonomia and is willing to work with you, even a single doctor who is willing to learn will make all the difference. Just because a disorder isn't well know, or easy to identify, doesn't mean that you have a psychiatric or psychological problem.  Dysautonomia is a physiological malfunction through and through. I've been there, and so have the majority of patients. Trust yourself and what you are experiencing. You know the truth of your experience better than anyone.

    2.  You're not alone.

When I was first diagnosed I knew of no other patients. Even having worked in neurology I'd never really  heard of Dysautonomia or the majority of it's subtypes. Eventually, the Yellow Wiggle, Greg Page, came out to say he had Orthostatic Intolerance and bringing some awareness to the disorders, but still I had no contact with other patients. Then I discovered a support group, and with it came relief. I wasn't alone. There were other people all over the world who were going through the same issues, and they understood. They understood the stress of the diagnostic process, the absurdity of lying down in the middle of a shopping centre, or planning trips by public toilet availability. They understood the tears and the laughter and the weird thoughts you have that you could share with no one else. Accurate statistics on Dysautonomia are poor at best. It is likely there are millions of people world wide who experience some form of Dysautonomia, especially when you consider that in the USA alone it is thought that over 500,000 people have, Postural Orthostatic Tachycardia Syndrome (POTS), just one of the many subtypes. We are far from alone in this struggle. Whilst social media, such as FaceBook, Twitter and blogging has shown just how many of us there are, the medical fraternity and statisticians have yet to catch up. As my friend Claire says "Dysautonomia isn't rare, it's just rarely diagnosed". There is a whole community out there to stand by you through this, come and meet us. 

   3.  It can be scary at times.

Dysautonomia can be damn scary. I don't care who you are and how stoic you may generally be, crushing chest pain beyond anything you have ever experienced can give you pee-in-your-pants levels of fear. "Am I dying?" "Is this a heart attack?" "Oh God, I'm going to die and leave my kids and husband".  I've had that conversation in my head on more than one occasion. These days I know my normal, which is highly abnormal to regular folk, but in those early days I really didn't know what to expect. Back in 2006/2007 I was nearly blacking out when I was driving, my doctor started mentioning more serious and life threatening diagnoses I needed to rule out, more and more symptoms started developing. Fear of death was pretty high on my radar. These days it takes a hell of a lot more to worry me. Crushing chest pain? Meh. Pain radiating down my left arm? Just another day at Chateau Rusty. I still have fear at times, it's a natural reaction to living with a stressful and unpredictable illness. Most importantly, if you are feeling scared see Point 2, you're not alone, and there are many safe places to discuss your fears and understanding ears to listen.

   4. It's okay to say it sucks.

Being ill sucks. Being chronically ill sucks donkey balls. It's hard. It's unglamourous. It stops you from doing all you want to do and changes who you are as a person. I am generally a happy person. I find the funny in the most unfunny of circumstances, but there are times where I just want to look up at the sky and say "WTH Universe?" As humans we have a range of emotions for a reason. Permanently perky is just as destructive as permanently pessimistic. In both cases you are stuffing down your emotions. We are all going to have bad days. The important part is to acknowledge what you are feeling, work through it and move on. If you keep stuffing it down you will reach a point where you explode and find yourself hysterically crying and screaming at your husband because he brought the wrong toilet paper. Which is totally disproportionate to the non-issue of the toilet paper (though in my an unnamed wife's defence, some brands are like sand paper and you really don't want sandpaper going anywhere near your tender parts). But you can only stuff down those emotions so long before they begin to eat you up inside.  It sometimes takes more courage to say it's hard, than to put on a false veneer of happiness.

   5. You're going to be okay.

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

No doubt after I push publish I'll think of more tips, but these are the basics. Just know, it gets better. Not in the Disneyesque sense of shooting stars and rainbow farting unicorns. But in the real world sense  where you're battered and bruised but you're stronger than you thought and more at ease with your life. It takes time, and there will be tears and disappointment and setbacks. But one day you'll turn around and realise that somehow you made it through, and no matter what your body is or isn't doing, you're okay.

Be kind to yourself.
Michelle :)

October is Global Dysautonomia Awareness month. Take the time to raise some awareness.