We Met On the Internet

Once upon a time, meeting this way was considered scandalous, even dangerous!  But, just as the early days of internet dating required certain intrepid desperation; my own desperation sent me online in search of people like me. It is so easy to feel isolated when you have an odd illness.  And when the illness carries on for years that loneliness looks for others.  Here is how I found the rare birds in New Zealand who are like me…

When I was first diagnosed, Dysautonomia is not the name I was given for what was wrong with me. Back then, I was mostly having problems with dizziness and fainting, things were to progress but I didn’t know that then.  Investigations showed that my heart was stopping, so they put in a pacemaker.  I was told there were very few people with my particular problem in New Zealand.  When I asked if I could get in contact with the ‘very few’ I was told that privacy laws prevented me from having their contact details. Which is perfectly logical, but not helpful.  It sounded like a job for the internet.

Let me explain a little first, about my odd condition. Dysautonomia is an umbrella term used to describe several different medical conditions  which all feature autonomic nervous system dysfunction.  The autonomic nervous system controls the ‘automatic’ functions of the body that we don’t think about.  Pupil constriction, tears, saliva, heart rate, blood pressure, digestion, bladder and bowel function, temperature regulation and the body’s ability to compensate for changes in posture.  Patients often feel dizzy and nauseous. They may not sweat properly, be able to pee and poop normally. Headaches can be a feature.  Fast and slow heart rates, labile blood pressure. They can experience brain fog and horrible pain related to various dysfunctional aspects of their autonomic function.  All the while looking perfectly normal.

Our bodies themselves are usually structurally fine; it is the dysfunctional nerve conduction that creates our problems. Our bloodwork and other tests can be fine. Yet we are not. Dysautonomia is often referred to as an ‘Invisible’ illness because it is hard to see the debilitating effects by looking at a person’s appearance.  Spend some time in the company of someone with Dysautonomia and you will see that it isn’t really invisible at all.  Our quality of life has been compared in the literature to patients with congestive heart failure. Functional disability is often a feature of patient’s experience. In short, Dysautonomia is really hard to diagnose and really hard to live with.  We all wish that more people understood that. We run marathons every day, just doing simple daily tasks.   And before we even got to this stage, we ran the marathon of searching for answers to our medical oddities.

Patients with Dysautonomia typically wait years for diagnosis, often suffering wrong diagnoses and medications along the way.

In my early search to understand more about my condition, treatment options and prognosis, I looked for medical information and support groups online.  Even my doctors couldn’t help me with more information. I was desperate to know more, to connect with others like me. People choose whether they want to be online, so my chances of meeting others like me who would want to meet in person was much better. To start with, the groups were all American. Then, occasionally a new Australian member would appear.  I posted messages, I scoured the boards, but New Zealanders were nowhere to be found.  Years passed and I gave up looking online for people like me.  It was too disheartening.

Then, a neurologist explained that I had Pandysautonomia.  It is a rarer, widespread, progressive form of Dysautonomia, the cause is still unknown.  There is no cure without a cause so the symptoms are treated as they occur.  The medication and treatment regime can be almost as debilitating as the condition itself. Armed with a new name for what was wrong with me, I hit the internet again.  The neurologist said he knew of one other patient like me, in Wellington. I was determined to find her.

How much the internet had sprouted in the time I had been absent! There was a new, large not-for-profit organisation in the States, raising  awareness, funding research and hosting conferences for people with Autonomic Dysfunction.  They pointed me in the direction of a popular Australian Dysautonomia blogger.  She pointed me in the direction of and Australian/New Zealand support group.  And there, at last, I found my ‘birds of a feather’.

There were already Aucklanders there!  And the girl I had heard about from Wellington! I was beyond surprised!  I cried. As nice as it is to wave across the digital divide to one another, it’s all kinds of wonderful to meet up.  I’ll never forget our first time. The relief of being around people who really got it! I talked so fast I could barely get a breath in. We laughed. We shared stories of doctors, discussed the differences in our treatment plans. We call ourselves ‘The Horizontalists’, because our meetings are usually in a park, lying on blankets and pillows. We commiserated with each other and our eye contact spoke volumes of unsaid words, unshed tears.  We continue to meet, our group has swollen in recent months as new patients are diagnosed and find us online.

Our kiwi group is 16 strong. Kathleen, Janette, Renee, Zen, Kirsty, Carolyn, Andrea, Sarah, Hailee, Rosie, Felicia, Hayley, Sarah, Rebecca, Rachel and little Emi (see a pattern there? 80% of people diagnosed with Dysautonomia are female). If there are more of you out there, shout out!  We’d love to find you.

Every person in that group is a crucial part of their family and friendship groups; each of them languishing with a diagnosis that lacks adequate research or effective treatment. Awareness is slowly increasing in the medical community, so diagnosis is more common now.  The thing is, the many forms of Dysautonomia is not as rare as you would think (more than 11 million people worldwide), but they are rarely diagnosed in New Zealand.  Some of the forms of Dysautonomia are Postural Orthostatic Tachycardia Syndrome, Multiple System Atrophy, Pure Autonomic Failure, Autoimmune Autonomic Ganglionopathy, Pandysautonomia & Familial Dysautonomia.

Finding others like me has brought me a community and comfort that is unparalleled.  But there is still so much to do. October is International Dysautonomia Awareness Month. It’s a tough gig pushing awareness when our numbers are so few.  We are generally too sick to do all the usual methods for getting the word out there.  But we are driven. We know that out there are more people like us, and people with autonomic problems which have yet to be diagnosed.  People struggling through each day, invisible in their communities, simply because no one knows about what they are going through. We really want to change that. Our community of patients might be small, but so is New Zealand.  We know our wider community will open their minds and hearts to people with invisible illness, as soon as they know we exist.

Dysautonomia = Dys (dysfunction) Autonomia (of the autonomic nervous system).
Dysautonomiacs = Regular people afflicted with this debilitating, sometimes invisible, chronic dysfunction of the autonomic nervous system.

Good sorts to meet on the internet.  🙂

 

October is(5)

 

Dysautonomia or Something Else?

Something new is growing in my mind garden.
It’s just a little shoot, but every time I look at it, it’s bigger, greener and more vigorous.  It makes me want to shout with happiness!

seedling

I’ve been growing some hope.

I’m not sure if it was a bad idea to plant this seed or not.  I am nervous about sharing. I’ve been a bit mind boggled by all the science and my arts brain is struggling to take it all in.  But here is the story.  It’s got a lot to do with blogging, doctors who never really retire (!) and the fact that sharing and connecting via social media is really incredibly powerful.

I know there will be some of you in the Dysautonomia community for whom this information might be significant.  You’ll find further information at the bottom of this page.

seedling2

In May, I started this blog.  I started it because I wanted to yell my story out into the world.  I wanted a platform.  And a big megaphone.  Somewhere I could shout out loud:

“This is crazy!  This weird thing is happening to me but people can’t see it, they don’t know… and I am not coping, it’s getting worse all the time,  my doctors aren’t helping me, and I am afraid… and I need someone, somewhere to hear my voice!  Are you like me, too?  Can you hear me?”  

And you did.  The relief of knowing you care is bigger than I can express.  I can’t fully comprehend the strangeness of knowing I have had 70,000 page views, from people even as far away as Latvia… and I am so glad each and every one of you are here!  New Zealand is such a small country in a big world; we’re so far from everywhere.  But not when we connect on the internet.

It’s a small world after all.

I am particularly glad for two recent happenings.  The first was that my lovely friend Caroline from Wellington (who also has Dysautonomia)  suggested I submit some of my writing to Stuff’s Online series on ‘Invisible Illness’.  I did and they published it, here. That article was read by a retired Swedish doctor living in Christchurch.  She linked to my blog from there.  She looked over my medical history and saw some things she recognised.  And then she took the time to email me.  These important words were the crux of that letter:

“…your description of your Dysautonomia, your long QT, your hyper mobile joints, your gastric dysmotility and muscular weakness just makes me wonder if another aetiology has been considered…”

 

She went on to explain that she herself is diagnosed with a rare condition that could possibly explain a lot of what was going on with me. She suggested I make some enquiries.  That led me to seek the help of an endocrinologist.  He mentioned the word channelopathy before I did.  And so we have begun the process of looking in to this as a possibility.  Channelopathies fall under the umbrella of Muscular Dystrophy. There are a few variations of these ‘periodic paralyses’ associated with mutations in calcium, sodium, or potassium channels, causing muscle dysfunction. Skeletal, cardiac, smooth, gastrointestinal, respiratory, facial and/or eye muscles can weaken or stop working periodically.  I can’t help but think, if I am one of these patients, it would explain my problems with my heart, my digestive tract, my bladder, my bowel, my eyes and the intermittent problems I have with my gait and leg weakness. Wouldn’t that be something?  A completely different tangent to consider!

Patients can have blood results within the normal range (as I do) and still have problems with these ion channels.  It is notoriously hard to pick up in routine tests and is best investigated by genetic screening.  This test is available in Australia.  Not all genetic mutations responsible for channelopathies have been identified, but many have (80%).  Treatment for patients with these channelopathies seems a lot more effective than the regime I am currently on for my Dysautonomia symptoms.  People with channelopathies need to dramatically amend their diet, depending on their sub-type, and take a range of medications to manage their condition. But what I have read so far suggests that it is a condition that responds to treatment.

Could it be that I don’t even have Dysautonomia?  Could this other rare condition really explain why so many aspects of my autonomic nervous system struggle to work properly?

Could my story have a happier ending than the one I currently face?

I am keen to find out.  And I am not stopping until I know for sure.  I might be barking up the wrong tree altogether.  Or barking mad.  I might have planted that seedling in the wrong place and in the wrong season.  But it is a beautiful thing to be watching my hope grow for a change.  I’ve decided that even if my hopes are dashed, it’s good to have them when I can.  Hope is powerful medicine for my wellbeing.  And I might just be growing myself a TREE!

I see my endocrinologist again in two weeks time.  So until then, I am watering my seedling and holding out for some sunshine.  Wish me luck!

Have your doctors ever considered this aetiology for you?
 Have you ever heard of muscle channelopathies before?
 Do you want to know more?
Look here first:
 Periodic Paralysis International
Then here:
 Periodic Paralysis caused by diet or exercise?
And here is the only blog I could find that wrote about correlating symptoms, if your curiosity is piqued:
http://periodicparalysis.blogspot.co.nz/2005/07/maybee-family-syndrome.html

I’d love to know your thoughts!