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.

But,

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 forms, or 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 www.reflectionsofabear.com]

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]

Michelle

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

Australian and New Zealand Dysautonomia community resources.

(source)

I am waaaaay behind in replying to emails. Time flies by and I lose days to this very inconvenient and uncooperative disorder. And the emails pile up way beyond my ability to catch up. So thought I'd do a short post regarding the three main questions I get asked.


Question 1

Number one comes from contact with Australia and New Zealand patients looking for a place to start, and doctors to see. I don't keep a list of doctors on hand and am reluctant to recommend any one in particular as one person's godsend can be another persons a'hole. But there is a place to go.

If you are from Australia or New Zealand there is a combined Facebook group which has files relating to everything from local doctors to local blogs. It's a thriving group with nearly 5OO members and is a fabulous supportive community. There are periodic catch ups in both countries and heaps of local information relating to things from Special Access medication procedures to applying for various welfare programs and mobility aides. It is a closed group so only other members can see posts and is for Australian and New Zealand residents ONLY.

The group can be found HERE

Question 2

Number two I am also asked if there is any local research. And luckily the answer is YES and they are often recruiting.

The Baker IDI Heart and Diabetes Institute has a lab where Dysautonomia research is undertaken, from drug trials (eg Droxidopa) to underlying mechanisms. A number of the doctors undertaking research also run clinical practices and see patients.


Question 3

Number three is there a local Dysautonomia charity. Again the answer is yes.

There is The Greg Page Fund For Orthostatic Intolerance, which raises funds for a range of research. It is also the fund for which I have been raising money for the last year. As you may recall Greg Page was the Yellow Wiggle and had to stop wiggling thanks to the development of Orthostatic Intolerance.


But wait there's more

2013 I dedicated Dysautonomia Awareness Month to Australian and New Zealand stories. It was great opportunity from patients and their family members from both sides of the pond to share their stories. So whether you're from Australia or New Zealand I'm sure you'll relate to the stories told

A roundup of all the submissions can be found here.

So there you go until I can get on top of my email nightmare I hope that helps a little. There is a small but growing patient community in both countries and lots of support to be found on the Facebook group.

Michelle

The musical accompaniment had to come in the form of the Australian New Zealand powerhouse that was Crowded House. Love belting out this song



I am on the last week of my year long fundraising so still time to share or donate.

You can head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $4,300, keep donating and hopefully we can reach $10,000 (ends Dec 9th 2014).

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.)

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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.

Eligibility

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.

Interested?

If you would like to participate, or would like to know how you can help, please email us at fainting.study@bakeridi.edu.au

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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.









Don't forget to check out the other awesome guest posts:

1. Claire: The ups and downs on the journey to diagnosis.

2. Amity: Art from the heart.

3. Claire: Finding your personal treatment regime. A spoonful of this and a teaspoon of that.

4. Belinda: Coming out.

5. Damon: The husband's tale.

6. Rachel: A wee problem.

7. Zen: A day in the life. 

8. Claire: I think I can. I knew I could.

9. Liam. A son's tale.

10. Kate: Maybe I'm not as sick as I think I am.

11. Stephanie: From challenge to hope and giving back.
12. Thomas: The proud, the stubborn and the musically inconsistent.

13. Rachel: Sweet Thing.

14. Claire: My mum. The Importance of family and friends.

15. Julia: Recovery.

And because many of us hope this research leads to us all feeling better, I give you Nina Simone's version of Feeling Good.

Value for money.

(Looking kinda normal at my eldest's deb. Well apart from the hand he's using to desperately hold me up.)

Last week Hayley over at Rellacafa wrote a great post entitled What if Desperation can Transform into Temporary Strength?, and I haven't been able to get it out of my mind. Apart from the fact that she referenced The Walking Dead in the post, which of course made me love her and the post straight away, she raised some really interesting questions that are close to all of us living with chronic illness. How is it that on occasion, we can summon what for those of us in the chronic illness camp, is the equivalent of Herculean strength to make it through certain events, when at other times we struggle to simple get out of bed and make a cuppa?

It's one of those issues that makes it so difficult to convey just how hard it can be to live with our various illnesses. How can we explain to family, friends and strangers that yes we were at a party, dinner, or in Hayley's case a wedding, and seemed relatively normal, and still impress on them just how difficult our lives are. Even after seven years it can still be hard for me to understand at times. Or, to continue the theme, in the words of Merle from The Walking Dead, "I'm a damn mystery to me".

Why is it I was able to push through my son's debutante ball, even manage to do the mother-son dance with him, yet not be able to cook dinner or get out of bed some days?

Part of it is the fluctuating nature of my symptoms. Some days I can simply do more than others. Often there is no clear reason why one day I can clean a bathroom and just be fatigued, and another it will leave me bed bound and crying in my pillow as yet another bout of overwhelming nausea and low bp hits.

Stubbornness is also a great, though not always healthy, motivator in these issues. I am after all, the classic Taurean, stubborn as a bull, or as my mother likes to put it, I am known "to cut off my nose, to spite my face". This of course gets worse the sicker I am. Somehow that always transforms to "you can't beat me!" as I push myself unsuccessfully and vomit in my newly cleaned toilet bowl.

But perhaps the most important part of the equation, is the value I place on the event or activity.

Everything I do has a cost. Drive the hour into town to see my neurologist? That'll cost me at least a morning of vomiting, diarrhoea and low bp with perhaps a migraine thrown in for good measure. Only my need for a review and better pain management make that payment plan acceptable.

Do the grocery shopping? That'll cost me multiple trips to the public loos, nearly vomiting in my trolley, the stress of potentially falling or passing out in public and then usually at the minimum a day of recovery. I've now handed that task over to my eldest son and/or husband as the cost is too high to ensure I get the brand of cheese I like.

Vacuuming and mopping my house? That can land me in bed for a few days or at least being little more than a comatosed blob on the couch. I can live with dirty floors. And lets face it with a house filled with teenage boys and two Great Danes that live in the house, the floor will be in the exact same state 20 minutes later. I may not win any awards from Home Beautiful but I would rather save that energy and be able to sit and talk coherently to my kids about their day or maybe wash my hair so it's more like human hair and less like greasy straw.

When  it comes down to it, there is essentially nothing about these and other mundane daily tasks that make them worth the effort involved.

But there are some activities and events whose value far outweigh the payment demanded.

Last night my best friend came around after dinner. This is one of my hardest times of the day, only trumped by the early morning. Didn't help I'd been up since 7am (for the WEGOhealth Health Activist Awards ceremony, of course the ceremony actually started at 8am Melbourne time, and I'd cocked it up like usual, but that's another post). Normally by the end of any day I am pretty non-functioning. I am indeed the Rusty Hoe by this stage of the night and it doesn't take much for me to fall over the edge. And yet I managed to make it through. And not only make it through, but had a great chat and many many laughs. Even when the laughter ended with the inevitable excruciating vice to the back of my head and greying vision (long time readers may recall that my neurologist told me that I had to avoid laughing as it drops my bp. Only an arsehole disorder would not allow for laughter to be the best medicine) I still kept going. Even today as I sit typing and the muscles on the back of my head are still sore after losing so much blood flow, it was worth it.

You see, catching up with her is always worth any payback and is worth pushing through. Somehow that one fact allows me to summon up every last bit of energy I have. Because for me, it's worth every bit of post-event exhaustion and increased symptoms. And for the short time of the event itself I can push down or at least deal with my symptoms. (Also helps that she's one of the few people I know wont bat an eyelid if I get vague, or grey, or need to lie down. And that she can interpret my incoherent thought processes and sentence structure with ease. Removing that extra level of stress is also a huge factor as to why I can generally make it through a catch up.)

And for me that is the crucial factor. There are very few people that I would value highly enough to sit up talking late into the evening. Equally there are very few events that are worth that amount of effort. And not just the effort of the event itself but the preparation beforehand and also the inevitable crash afterwards.

There is always a price. My son's deb equalled a week's worth of preparation (eg shave my legs one day, wash my hair the next, start increasing my salt and water intake a few days beforehand, minimise doing anything bar the essentials to minimise fatigue, taking extra salt, water and meds on the day), followed by a few weeks of recovery and completely writing off the week immediately after the event. A one night event is transformed into a month long event when chronic illness comes into play. And yet there I was stumbling my way through the mother-son dance and spending 4 hrs in a noisy, hot ballroom without passing out. In comparison, the day-to-day minutia are not so worthy of my efforts.

There is also the factor that these events are one offs or intermittent. The level of effort involved combined with the payback, could never be sustained 24/7, 365 days a year. Cleaning or cooking everyday means a level of activity that in the short term may be achievable, but at a sustained, every single day level, is simply not. I would rather have dirty floors and multiplying dust bunnies and be able to blog, interact with my family or maybe catch up with a friend, than a perfectly clean house. I'd rather save my energy for showering or some days, simply breathing, than having a fully cooked meal. That's why they invented takeaways. And on the days I feel bad, cleaning, cooking or social engagements that are more obligation than enjoyment, are not worth my pushing through, and without that motivation I am simply unable to do them.

Most patients with chronic illness know The Spoon Theory by Christine Miserandino, and it continues to be one of the best explanations about the way I function (or don't function as the case may mostly be) that I've come across. I have a finite amount of energy each day. And once it's gone that's it. Sometimes, I spread it out over the day and sometimes, I use it all in one spectacular moment that I deem worthy. In those moments I can look normal, I may even dance like Hayley. I know I will most likely even surprise the hell out of myself and I will look back and think, "How the hell did I do that?" Or in the middle of the aftermath I may question, "Why did I do that?" I know there will be payback. I know that it can sometimes be bad. But now I make sure that whatever it is, that it is worth it.

I want value for money.

More bang for my buck.

I want a life punctuated by shining moments worthy of all my spoons.

The in between moments may not be great.

It may make it hard for others, or even myself, to understand my illness.

I may have a house that is more dust than decor.

But I choose to prioritise what is important for me.

What makes my life worthwhile.

And lets face it, when Nutbush City Limits inevitably comes on the playlist of every wedding, party, deb ball, or my personal iTunes collection, doing the moves is one of those times it's worth pushing through. Even if you should happen to end up face down on the floor afterwards.

Cheers
Michelle :)

If you pop over to check out Hayley's blog, and you should, tell her I sent you. She has great information about Complex Regional Pain Syndrome (CRPS) as well as being an amazing writer and having a wicked sense of humour. You can also find her on Twitter.

Now if you don't know The Nutbush dance moves, I'm not sure we can be friends.

Accessing IV Saline: A lesson in futility.

(IV Tequila is looking good right about now. Source)

Back in January my cardio finally gave the okay for regular IV saline. The idea was that it would give me a burst, and that all going to plan, I would then be able to also start a basic reconditioning program (thanks to my dodgy health and malabsorption issues I have lost a large portion of my muscle mass, I only just scrape into a BMI of 17 these days). It was something of a personal coup. IV saline, although fairly common in the US as an adjunct therapy in various Dysautonomias, is simply not done as a regular treatment here in Australia. Once you reach the fun point of complete bodily meltdown you can generally access it as a treatment in your local Emergency Department (ED). But as a regular preventative treatment, well, it simply rarely happens.

There is a large body of both anecdotal and scientific evidence that it is helpful. Hypovolemia (low blood volume) is extremely common in Dysautonomia, as is chronic dehydration. I currently take medications to both increase my deficient blood volume and stop me peeing out my precious fluids every three seconds. IV saline bypasses the dodgy parts of our bodies that refuse to absorb fluids, to directly access the veins and increase blood volume. For many this means being able to function. It also means being able to exercise and gain back some strength, which in turn helps with blood flow and general health. Bonus.

I am constantly on the threshhold of dehydration. On hot days, of which we have many, no matter how much I drink I remain dehydrated. My body simply refuses to absorb oral fluids and I might as well just pour them straight into the toilet bowl. Case in point: last week on yet another stifling day I drank nearly 5litres of fluids and still my lips peeled and my skin was lax and I could pinch the skin on my hands and it would simply stay up in that position till I rubbed it down. I felt like death. Simply put I was ridiculously dehydrated.

Whilst, the idea of being stuck with a needle on a weekly basis is not high on my list of fun things to do (a port is out due to my high infection risk) I am happy to do it as a trial for 2-3 moths over the worst of Summer. 

The risks of IV saline are minimal. Especially when compared to many of the drugs I have tried over the years whose potential side-effects include fun things such as stroke or hypokalemia (low potassium which can in turn lead to a heart attack). 

All in all it sounds like a good option. I also have the support of both my cardio (who is my primary coordinating specialist) and my GP.

Yet....

Today is the 5th of march, 2 months later, and I still haven't been able to find a way to access IV saline on a regular basis. 

Yesterday, I went back to my GP to be told yet again that she had not found a way for me to access IV saline. This is not due to any lack of diligence on her behalf. She is very supportive and has gained support from the clinic head to try and find a way for me to access this simple treatment. Only one problem, there is no where in my local area that is currently able to give me a litre of saline once a week (travel is difficult for me now and any beneficial effects of the saline would be negated by the impact of travel on my touchy body). 

My local dialysis/infusion centre is filled to overflowing. Of the local GP clinics that have a nurse on site, none have the room available to let me sit for 2-4 hours of infusion. Hospital in the Home, a program designed to keep people out of hospital, requires an admission under an in-patient hospital clinic to be eligible in the first place. Private nursing to come to my home is not financially viable. Admission to my local Private Hospital ED would cost me almost $300 for one litre of fluids. My local Public Hospital ED is a less than user friendly environment, plus the risk of picking up a bug is high. 

My GP continues to search and I am grateful she is on my side. But the fact that it is looking like I have more chance of winning the next Tattslotto jackpot than accessing IV saline, is starting to grate.

I can access expensive and potentially dangerous prescription medications with the swirl of a pen, yet I cannot get a comparatively safe and inexpensive litre of salty water shoved in my arm. The craziness of such a system is not lost on me.

I do know that the last time I had continuous fluids for 5 days in hospital my bp sat at around 120/70 for 5 days and my hr in the 60's. My GI remarked at the time that IV saline worked better than Florinef, my main medication. That five day period is the only time I have had such readings since I became sick back in 2006. I should add that was at the time my gastric system gave up the ghost and I lost 16kgs in 2wks. Those fluids worked like magic against incredible odds.

Having regular saline infusions will not cure me. It will not make me fully functional. It will not get me back to work. I not asking for a a port as I know my immune-system is toast. I am realistic in what it may or may not provide me. My health picture is complex and multi-dimensional. But IV saline has the potential to remove at least a part of the many obstacles my body faces. And lets face it the removal of any potential excess disability should be seen as a positive. 

It is hoped that the single litre of fluids will give me the boost I need to exercise and gain back some strength. But it's potential goes far beyond that one basic rehabilitative goal. It may also allow me to leave my house by myself. To pick up my son from his bus stop. Or even go to my local supermarket and buy a litre of milk. To the bureaucracy and politics that are currently stopping me from accessing IV saline that may not mean much. But for me and my family it would mean the world.

I do everything my specialists require of me. I take my meds, I follow my diet, I exercise when I can, I use all the aides they suggest, I make sure I get out and potter in my garden, or write my blogs, or cook, or paint. I don't wallow in my illness and am in no way non-compliant. All of this keeps me semi-functional, but I am at a plateau, a plateau that is slowly edging backwards. 

As I sat in my GP's office discussing the issue once more I could feel the tears forming. Not because I am sad or depressed but that I am frustrated to the point of tears. That such a simple and cheap request is being denied by obstacle after obstacle. 

I am told to take control of my health, to be informed and to seek out the care I need. I am lucky that my specialists are supportive and work with me. But their hands are as tied as mine. The insanity that I can buy bags of saline and all associated paraphernalia on ebay is not lost on me. The fact that if I was wealthy I could access this simple option with ease is not lost on me either. I don't know where else to turn, and I am at the point where I must consider that IV saline is simply not a viable option, just like Ocretrotide or IVIG before it.

It is not the physical aspects of my illness that are necessarily the hardest to bare. It is the constant battle to access and naviagte often basic health care. A battle that continually stretches my already over-stretched physical and emotional reserves to breaking point. It's hard to not become cynical and jaded in dealing with a medical system not designed for chronic and complex conditions. Part of me thinks that the system relies on people like myself and others in my position, ending up too tired to keep banging on about pursing such options. Lets face it the medical bureaucracy is a machine that just keeps ticking. It can wait me out. It'll keep on ticking long after I've collapsed from exhaustion and given up the fight. Part of me also knows that there are good doctors and other health professionals who want to help me, but simply can't. I know that must be frustrating for them too. To know there is a care option that may help their patient and yet they simply can't facilitate access to that treatment. And part of me is just completely over playing the roll of Sisyphus pushing my boulder up the bureaucratic mountain. I really don't want to play this poxy game any more.

I wont let this break me. But I may need a few more rolls of duct tape, a hot glue gun and a great deal of MacGyvering to keep holding my dodgy pieces together. 

Michelle

Highway to Hell by AC/DC just seems so appropriate right now. 

Changes: Day 22 #NHBPM

I picked the topic of Change for today as I inadvertently did a Thankful post yesterday. Good old brain fog didn't think to check the future topics.

This really is a quick post as I am sharing a video called Changes from The Dysautonomia Information Network or DINET, as it's commonly known. This video was produced a few years ago now and concentrates primarily on Postural Orthostatic Tachycardia Syndrome (POTS) but much of the information is appropriate for most forms of Dysautonomia.

It features my dear friend Autumn and the lovely Shannon, both of whom I've known for a number of years now. In a way it makes it a more personal video for me knowing both of them and how strong they are despite their varied illness paths. Also stars a rare doctor who both has POTS and treats the disorder, which provides a nice unique perspective on the disorder.

You're both Rockstars Autumn and Shannon!

Cheers
Michelle :)

Because every post should have a musical interlude I give you a video I created about my own experience with Dysautonomia back in 2010. It's accompanied by Today I'm a Daisy by the fabulous Australian artist Deborah Conway.

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.

Cheers
Michelle :)

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.

But,

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.

Invisibility is a Multi-factorial Beast

[Image: a black and white still from the Invisible Woman (1940) Image of a midcentury bedroom an invisible woman is sitting on a round tartan covered footstool. All that is visible is the pair of thigh high stockings she is putting on.]

Interpretations of the 'invisible' aspect of Invisible Illness, are as varied as the people who live with the illnesses and disorders themselves. Dysautonomia falls into the invisible camp for the most part. Patients frequently report being told they look too well, or absurdly even that they are too pretty, to be sick. Not just from those in their lives, but sadly also by far too many medical practitioners. It often seems we are all part of some bizarre masquerade ball, wearing healthy masks, whilst our insides slowly fall apart. Whilst it is the aesthetic aspects of Invisible Illness that are often the most discussed, invisibility is really much more of a multi-factored beast. From common misperceptions of what sick looks like, to the way society and the organizations we create to deal with health and illness treat the ill, invisibility is a problem that needs to be addressed at multiple levels.

The aesthetic aspect is the most obvious feature of Invisible Illness. As I've written before I think this issue is two-fold. For many the lack of visible symptoms is problematic. Common perceptions of illness involve wheelchairs, hair loss, scars, bandages, and the like. Symptoms like tachycardia, weakness, nausea and pain aren't easy to spot. And yet their impact on functioning can be just as devastating. With regard to Dysautonomia, visible symptoms such as blood pooling are often covered by compression stockings. Or patients wear long pants to hide what is often thought of as an unattractive aspect of our presentation. Many, myself included, prefer to use what energy they have to try and look our best when we leave the home, even if that is just to see the doctor, thus hiding what few visible symptoms we have. At best a patient may look tired. But for the most part, others remain unaware of the continual internal symptoms with which they may be struggling.

This is further exacerbated by the simple fact that when most ill, and symptoms far more visible, Dysautonomia patients are usually not well enough to go out in public. And, not just at a social level. The common lament of being too ill to get to the doctor or hospital, means that for many patients even their primary doctor may never see them at their worst. It is often only those closest to a patient, their immediate family, who are present to see when symptoms are truly visible. This is further compounded for those who live alone or are isolated, who may never be seen when visibly ill, by the simple fact of their living situation. 

Then, and what I see as the more pressing issue of invisibility, is the lack of knowledge about the disorder. Dysautonomia, be it POTS, NCS/NMH, OI, or any of the many and varied subtypes is poorly known and little understood. Awareness campaigns are still in their infancy and neither the umbrella term, Dysautonomia, or any of the subtypes have made their way into the common lexicon. By comparison words such as 'cancer' convey a large amount of information in a short space of time, and you do not need specialist medical knowledge to understand the concept. As a community, we know that a cancer diagnosis is serious. From that single word we have instant basic ideas of risk, treatment options, difficulties a patient may face etc. This is not the case for Dysautonomia or any of the subtypes. Without direct knowledge of a diagnosed patient, very few have heard of the disorder. 

This lack of knowledge is not confined to the lay community. Even within the medical community it remains relatively unknown. Hence patients remain undiagnosed, untreated and often misdiagnosed. Many doctors may never (knowingly or unknowingly) seen a Dysautonomia patient in their career or may only have a single patient with the disorder. Additionally, many of the drugs used in treatment are orphan or specialist drugs, known only to those who specialise in the area. Even with doctors who have knowledge of Dysautonomia, many do not understand the impact these disorders have on day-to-day functioning and patients are often told that their diagnosis won't kill them, or is nothing to worry about. Leaving patients feeling both unheard and unseen.


Society does not encourage the free discussion of the less savoury side of illness. Illnesses that have a gastric component are a case in point. Many times these issues have a major impact on a patients ability to function, or even to leave their own home. Yet free discussion of these issues is strongly discouraged by societal norms. Many patients are living with issues such as daily faecal incontinence who have never discussed this with anyone in their lives. The sheer volume of patients living with this and other 'embarrassing' issues is not well known with many even too embarrassed to discuss them with their treating doctors. Yet as I have often found when discussing these issues on the blog, they are experienced at some level by many patients. Yet these problems remain essentially invisible due to societal taboos.

And then there is the simple fact that the sick in our society are frequently made to feel less. Especially with regard to chronic conditions. Most people can understand an acute illness. There is a very clear process involved. You get sick, you have treatment, you recover. A simple A to B to C. For those with chronic illness it's not that simple and as a society we have been taught to be ashamed of 'failing' to get better and many are essentially shunned. The implication being that they have not tried hard enough to be well and are therefore somehow to blame for their predicament. We apply a work ethic to health and fail to realise that work comes in many less obvious forms. Simply, getting out of bed and brushing my hair can be work some days. Being able to attend one school concert is an exercise in logistics and planning. Managing my medications and lifestyle modifications to maximise what I can do and maintain what little health I do have. But whilst important at a personal level, these exercises are not easily quantified or understood by traditional paradigms.

Our medical system, it's funding and treatment options then reflect this societal attitude. Yet another layer of invisibility to complicate the mix. Programs for complex and chronic conditions (especially those that are rarer) are limited and often expensive. Whilst, short-term rehabilitation programs exist for things like heart attacks and hip replacements, such options for disorders that require long-term rehabilitation are limited. Disorders such as Dysautonomia do benefit from long-term physical rehabilitation, but there is no quick fix and patients may need to come back year after year as their symptoms change (It is important to remember that there are subsets for whom such programs can be harmful). These programs are few and far between and quantifiable improvements and outcomes may not be as clear as they are for more acute illnesses. Often, particularly in remote locations and small communities, there is simply no place in the medical system for the complex, chronic patient. The lack of appropriate programs means patients aren't seen. And in our highly pressured medical systems, what isn't seen on a regular basis slips from the consciousness. As a result a whole community of complex, chronic patients exists out of sight, managing as best they can on their own. Invisibility in anyone's language.

How all these factors interact for the individual colours their perspective on what invisible means for them and for many all these factors contribute to patients feeling very alone and very invisible. 

As part of that community and having had those experiences I can empathise and understand the feelings of invisibility. But the reality is that these so called Invisible Illnesses, such as Dysautonomia, aren't actually invisible for those who live with them. At a personal level Dysautonomia is very visible in the way it impacts upon my life hence my post Dysautonomia: Invisible Illness my Arse! It is seen in my lack of participation in life. When I was unable to attend my child's sporting event or school play. When I am unable to simply go to a cafe for a coffee with a friend. When I am unable to stand to make dinner. When I am unable to brush my hair or lift my head from my pillow. Invisibility and visibility coexisting in one large, complex and chronic package.

Aesthetics are but a small part of the problem of Invisibility. It is how society treats the ill at the personal and organisational level. It is how our illnesses present and impact upon our lives and how we internalise our individual experiences, that defines Invisibility. Visibility and awareness and, in turn, improved patient experiences, will only be achieved by addressing all these factors.

What does Invisible mean for you? And what can we all do to enact change?

Michelle :)

Some other of my ramblings on the topic of invisibility can be found here and here.

I thought this was an appropriate musical accompaniment as we definitely need a better way of dealing with chronic and complex illnesses. 

Remember to share if you like :)

Teen POTS and the case of the missing hand.

It's teen time here on the blog today. As all us old fogeys take our nanna naps, fellow Aussie, Rhinane, brings some of her youthful exuberance over to guest post. Okay, okay, I may be the oldest foggy here. And yes I can see 40 looming in the distance. But 15 seems very young, and 38 *cough* almost 39 *cough* correspondingly very ancient, to this old biddy, especially when my youngest is 14! Whilst I sit here sucking on my butterscotch lollies, reminiscing about "in my day..." whilst yelling at the neighbourhood kids to get off my lawn, I'll let Rhianne introduce herself.

"My name is Rhianne and I am a 15 year old with POTS, dysphagia, vasalva induced syncope and myclonic jerks. I blog over at http://keepsmilingkeeptrying.blogspot.com.au/ I try to live each day to the max because you are only a teenager once!"

Teen POTS and the case of the missing hand

One time... I lost my hand. It was the scariest minute of my entire life. Yes, it beats the lethal weapon at Movieworld.

Anyway, it was a real brainfoggy sort of day. I was doing schoolwork (I was home bound at this stage) and I was doing financial maths. I had to google there is seven days in a week. Then when I counted them and got to Friday, I freaked out. Where was my other hand?

Luckily, I eventually found my other hand. (Who ever would have guessed I was using it to count my fingers on my left hand with?) That is just one of the many situation that POTS has put me in. My constant brainfog provides me with constant entertainment.

This is me. My name is Rhianne and have been diagnosed with POTS since March of last year. I am fifteen, in year 11 and have a score of 13.8 million on temple run (just in case you're wondering). I run the blog http://keepsmilingkeeptrying.blogspot.com.au/.

Being a teen potsy isn't all doom and gloom though, I can colour coordinate my limbs with my purple converse boots.

Well I must admit, it isn't an exact match but teamed with an emerald school skirt with black full length skins, it is a great look. I should walk around with a ghetto blaster blaring LMFAOs "I'm sexy and I know it" because if anyone can rock that look, it would be me.

School also provides many more challenges (besides the whole wardrobe challenge), stairs, homework and the fact my friend love calling me Pothead. The last one is always awkward, especially when they love calling things out "like hey Pothead!" across the playground and people look around and find me the recipient is me.

After dealing with POTS symptoms for almost three years, I am learning to deal with symptoms better and better. And in the words of Elton John I'm still standing better then I ever did, looking like a true survivor, feeling like a little kid.


Rhianne

The Tale of a Garden-Variety POTSy Lass

(You know what I love more than this quote? The blog I found it on had,

 "god knows who the author is… google him?" Sad, but also highly amusing)

Today's guest poster is fellow Australian Bobette, the lovely Belinda. Luckily her love of Pride and Prejudice and Mr Darcy, outweighs her slight jibe at my beautiful Victoria, which we all know trumps Adelaide anyway. You may have lovely churches and Cold Chisel, but we have a festival named after the Aboriginal word for 'anus', Moomba. Top that, lady! But state rivalries aside, I'll let Belinda tell you a little bit about herself.

"Please allow me to introduce myself, I'm a man of wealth and taste" - Oops, hang on. Not quite accurate but if you're going to quote the Rolling Stones, concessions need to be made. I am neither a man, nor that wealthy, but I do like to think I have a little bit of taste (bad pun jokes aside). So obviously, female, 36, Adelaidean married to gorgeous cycling obsessed Victorian (won't hold that against him) and we share a house with a rabbit (Peter) who thinks he's a dog, 2 budgies who think they own the house and in recent weeks a cat, who has adopted us as its new family, mainly because whoever its owners were had stopped feeding it and it had become so skeletal that I couldn't in all good conscience let it starve to death. I am an ICU nurse despite the fact that I haven't been able to work for nearly a year and a half but technically, I am still employed by them and I refuse to be defined by my illness. I am hopelessly obsessed with the TV shows Friends and Spirited and I think that music has never been as good the alternative/Indie/grunge 90's era (having written that I've just thought of a whole stack of current bands and artists that I adore). I love to read (favourite book: Pride and Prejudice - who doesn't want a Mr Darcy?), I love to cook (when I can stand up long enough) and as something positive about this POTS thing and having to spend hours lazing around on the couch I have recently learnt to knit, so am completely prepared for the harshest of winters despite never having seen snow in my life.

The Tale of a Garden-Variety POTSy Lass

Well, here goes. A replacement post for the irreplaceable Rusty Hoe. I shall temporarily call myself The Wonky Spirit Level because that seems to be where my head space is at most days. Constantly trying to get that little bubble in my head to stay between the two black lines so I don't fall over or walk into walls ("Oh, it's nothing, I just walked into a door...").

My husband and I have both had dealings with pots. Him - when he went to the GP for vaccinations for an overseas holiday and promptly fainted at reception, fell backwards and smashed a terracotta pot with his head, earning himself an ambulance ride and a head CT. My one great regret about this is that it happened before I knew him and I missed the opportunity to laugh and mock. Turns out it's not as funny in retrospect. Me - recently diagnosed after being unwell for two years and eventually demanding a referral to a cardiologist because I was damn sure the symptoms were not all in my head as many doctors tried to tell me.

My workmates will tell you that POTS is an appropriate diagnosis for me. They will wax lyrical about how they've always known I was 'Potty' and I know to them that it must sound like a bit of a joke diagnosis. I imagine it to be wearing a red nose, big shoes and riding a tiny bike. And, like a clown, I have decided to laugh in its face (except on really bad days, because it's too much effort and quite frankly, sometime clowns just aren't that funny). Despite this I am now on a pathway of learning. Learning things about my body and my self that I never would have got the 'opportunity' to otherwise. Learning that I'm stronger than I thought. Learning that I can laugh despite being subjected to autonomic testing (Mum said she could hear my laugh drifting out across the day ward from the cardiac suite. Weird, because I don't remember it being all that jolly). Learning who my true friends are because they will stick with you through the bad times and let you know that they are thinking of you. And, not wanting to get too "Oprah" on everyone here, wondering if because of all this I will emerge a better person and, if I ever get to return to work, be a better nurse. After being healthy for 34 of my 36 years, I've never known life on "the other side". Apart from a few minor coughs and colds, I've never been a patient. I now have new insight into just how helpless and overwhelming it all can be and I look at patients now with new understanding and marvel at their bravery. Being a patient sucks and when one day I'm able to be the carer again, that's exactly what I'm going to do - care.

But above all I've that through all the sickness, tests, misdiagnoses and metaphorical kicks to the bollocks, that I still have hope. Hope that I will one day get better. Hope that my hope is not misplaced. Hope that I can once again be the wife that my husband deserves (ooh, hard to see, tearing up a bit here) and hope that I will one day see my POTS lying on the floor, smashed to pieces, like that other terracotta pot that has long since gone to Potty heaven.

The Wonky Spirit Level

Belinda