Sunday, 2 October 2016

Exotic Particles.


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

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

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

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

It makes for a weird midlands of diagnosis and membership.

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

It doesn't make for easier management.

My Autonomic Nervous System in still shot.

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

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

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

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

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

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

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

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

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 formsor that no matter how many times I have written that I have a form of Dysautonomia that doesn't fit anywhere over the last seven years, people still think that means I have a form of POTS. POTS and Dysautonomia have somehow morphed into one entity, leaving many feeling as if, despite living with a form of Dysautonomia, they have no place in the discourse.


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

13 comments:

  1. Oh boy, I think I'm definitely an exotic particle of the ME/CFS variety. People like myself who are severely affected seem a world away from mild sufferers in symptoms and how it affects their life. I still manage to baffle my doctors with my crazy, horrendous symptoms, and how debilitated I am - I almost wouldn't believe it myself if I didn't know there were other similarly severely affected sufferers out there. The internet is such a blessing for we exotic particles.

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    1. I think there are a lot more exotic particles around than people realise. Even in awareness raising there are some narrowly defined parameters that get the most airtime and the outliers don't have as much of a voice. We can connect online as you say, but sadly I receive so many messages from people afraid to share their story. We (as in society as a whole and our various illness communities) need to be open to, and to facilitate, more and more voices in all disorders.

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  2. You're awesome, Michelle! And your timing is impeccable��

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  3. So much this! Even as someone who has both NCS and POTS, it's still so frustrating that people read up on Dysautonomia and decide to tell me that the reason why I'm not getting relief is that I'm not fully availing myself of treatment. I see a freaking specialist, a top guy in the field and even his office is scratching their heads trying to figure out how to help me. We just had to get rid of one medication that simply never worked for me. And even though I've been extremely POTSie lately, my most recent episode was NCS. Literally only one of my friends understood me when this happened. I read things like this blog post and realize that I'm actually one of the lucky ones. I also console myself that I'm somewhere on the periphery of belonging to a group that houses such cool people as you. (Seriously, you're all kinds of eloquent awesomeness.)

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    1. Thanks Suzanne. I don't know if I'd say you're one of the lucky ones, having any form of this kinda wipes away the lucky part. I think there is a lot of grey even for those who are diagnosed with a specific form or two. It is great that there is more awareness these days, I'd (and from the messages I receive many others) just like it to expand. For people like myself with no subtype to hang our hat on we sort of float in the wind, and there are a lot of people feeling very isolated. I can at least share my voice on the topic but it'd be nice to see it picked up by others
      xx

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  4. Like you, I don't have POTS. My Cardiologist tells me he has never known anyone with so many co-morbidities, a family doctor I went to called me 'fascinating'!
    I don't want to be fascinating, I want to be healthy, failing that, I want a straight forward diagnosis and treatment. Like you, it isn't going to happen anytime soon.
    I don't fit into any box. As frustrating as this is for diagnosis and treatment it is also frustrating when you try to explain to family/friends just what is wrong. Just why you have to withdraw from another social function, just why you cannot ....
    Once again, I appreciate your work, your using the little energy you have to advocate and encourage those who share that space under the umbrella and who feel 'lost in space and time' battling against an ignorant medical profession, all feeling our way in the dark dabbing the bruises and bandaging the breaks but not being able to get to the root cause.

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    1. Fascinating, interesting, medical mystery, ugh they are all horrid labels when you're on the receiving end. What may be fascinating for the doctor, can be hell when you are living it. Explanations are so difficult when you don't quite fit anywhere. You can't even direct someone to a website for an easy explanation. There are many of us sort of floating around under this umbrella. A big family of misfits xx

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  5. Me too. All the specialists that I have seen (and it's ALOT) have all said that I am the only patient they have ever seen with my symptoms. A zebra. A diagnostic dilemma. These are the names I am called by my specialists. But while reading this post I was thinking....well maybe that's because all the specialists I have seen haven't seen all of you too. Where I veer off from alot of people with dysautonomia is that I don't have POTS but I have severe atrial fibrillation....and a few heart surgeries later it is no better. The medical establishment has successfullly worn me down to a level I honestly didn't even know existed. Sometimes though I don't mind thinking about how angry I am about the doctors because I can feel it raising my blood pressure. lol Linda

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  6. Omg. You get it. I'm a fellow weirdo. I am not against the studies of POTS, at all. But the disappointment when people get a diagnosis other than POTS, the misinformation being spread because of promotion of one form over the others, drives me up the wall. Thank you for your post.

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  7. You have no idea how well timed this article is on the facebook page post for me. The doctors are not interested in not helping if you do not fit into the box. Neurologist: "I am thinking that I will just refer you back to your Primary Care doctor" Me: "But, Doctor, if I told my PCP that I had pins and needles in my legs and arms and had trouble walking straight line, she would refer me to a neurologist, wouldn't she?" Neurologist: "Oh, we let's do this (fill in the blank) test." At the same time he was prepared to take away my license due to my fainting spells. I told him that I don't drive anyway because I am not safe on the road when the dizziness hits. Time for a new doctor, eh? Thanks for leading this wonderful group of weirdos. I am proud to be in your company. Rainbow and glitters to all out there dealing with his.

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    1. Weirdos unite :D I'm sorry you are stuck in the position where no one is willing to take responsibility for your care (I'm stuck in a similar position painwise) I'm not sure what we are supposed to do in situations like this. It is why some fantastic doctors end up swamped and closing their books, because there are so many average or substandard docs who either find us too difficult or too tiresome. I know we are complex but we still deserve care. I hope you can find a doctor who can help you navigate your care. :)

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All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx