Guillain-Barré Syndrome: The Three French Words That Changed My Life.
Noun. Guillain-Barré Syndrome
Guil·lain–Bar·ré Syndrome \ˌgē-ˌlan-ˌbä-ˈrā-, ˌgē-yaⁿ-\ GEE-ann Bar-Ray
An uncommon form of polyneuritis of unknown cause characterised by rapid onset muscle weakness, loss or altered sensation, and paralysis.
Named after French Neurologists Georges Guillain and Jean Alexandre Barré in 1916.
This illness changed the course of my life, taking everything that was familiar and turning it completely on its head.
Tell me a story…
I vividly remember the moment that I realised something was seriously wrong inside my body.
November 11 2005. Remembrance Day.
I was twenty-four years old.
It was a Friday night. I was out with some friends for dinner when I suddenly started slurring my speech.
Most people wouldn’t find that unusual for a Friday night.
There is one critical difference here: I’d been drinking soda water all evening.
As I stared at my reflection in the bathroom mirror, eyes streaming, vision alternating between double and blurred, struggling to get my mouth to obey my brain’s commands, I tried to quell the rapidly rising feeling of panic.
It all went downhill from there.
Diagnosed with a life-threatening case of Guillain-Barré Syndrome, an autoimmune system disorder that attacks the peripheral nervous system, within three days I went from being a carefree twenty-four-year-old to a critically ill twenty-four-year-old, jumping into the record books with one of the worst cases of Guillain-Barré Syndrome my treating hospital had seen in 10 years.
Lying in a bed in the hospital’s critical care unit, my body systematically shutting down.
Seemingly not content with getting ‘mainstream’ Guillain-Barré Syndrome, I went for its rare cousin, the Miller Fisher Variant, aka ‘Upside Down Guillain-Barré Syndrome.’
The main difference between the two cousins is that the first nerve groups to be affected by Miller Fisher are those in the head, typically resulting in paralysis of the eye muscles, before descending the body. Paralysis in ‘mainstream’ Guillain-Barré Syndrome typically begins in the legs before ascending the body. There is also abnormal muscle coordination (tick!) and the absence of deep tendon reflexes (tick!) with the Miller Fisher Variant.
I experienced full body paralysis.
My optic nerve was (temporarily) damaged. I had light sensitivity and double vision in both eyes. My blink reflex stopped working so my eyes had to be taped shut at night to prevent them from drying out.
I was fed using a nasogastric tube. And let me just say, the formula they feed you is NASTY! Worst. Gas. Ever!
I slurred my speech, making it very difficult to understand me.
There was the night where I thought I was going to drown in my own saliva because I couldn’t swallow or spit properly.
I was in an incredible amount of pain, barely able to stand a sheet covering my body.
There were days, which morphed into weeks, of uncertainty.
Guillain-Barrè Syndrome isn’t diagnosed based on a blood test, it’s on signs and symptoms and supported by tests such as Nerve Conduction Studies (I’ve been zapped a LOT!) and examination of cerebrospinal fluid through a lumbar puncture or spinal tap.
In the first couple of days of diagnosis, the doctors were pretty sure I had Guillain-Barrè Syndrome but they weren’t 100% certain.
They decided to treat me for it anyway, knowing that if they didn’t then there was a very real possibility that I may not survive.
I had no control over what was happening. I had to trust that these doctors, these people whom I had only just met and yet essentially held my life in their hands, knew what they were doing.
I had to trust that this would all play out as they said (hoped!) it would.
I had to trust that I would eventually regain function in my body, to move again, to speak properly again.
That kind of trust, that level of reliance on another person(s) with your own life…that’s one of the scariest things you can ever experience.
And this was just the acute illness stage, never mind the recovery stage, which is still ongoing some 11 years later.
Guillain-Barrè Syndrome. Getting. Better. Slowly.
Now it’s your turn! Any other turtles in the house (aka Guillain-Barrè Syndrome fighter)? Do you know someone with Guillain-Barrè Syndrome? Share your experiences below.
May is Guillain-Barrè Syndrome Awareness Month.
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