The phone rings after midnight. People aren’t meant to ring after midnight. When the only people who will phone after midnight are the local hospital where Jennie is in, it can only mean one thing. Bad news. She is having difficulty in breathing, they are rushing her to the General Hospital in town.  That was Tuesday night.  Tonight she is on life support.

A cough, a sneeze. Feeling rough but you don’t think about it.  A common cold.  It passes.

It’s a war out there. Germs and diseases, viruses and bacteria. but the body is strong. It has evolved. It has built defence mechanisms. It’s got an army of anti-bodies. Anti-bodies to fight off the the common cold. That’s why it passed.

But what happens when the army looses control? What happens when there is a coup? What happens when the anti-bodies forget to stop fighting and turn on the body itself? What happens…

Welcome to Guillain Barre Syndrome.

We’d never heard of it before either.  Who has? It affects a handful of people -1500 in the UK- each year.  We are getting to know a lot about it now.  Saturday everything was fine.  A normal existence. On Sunday Jennie had a tingling feeling in her fingers. Monday morning she work up and had no movement in her left arm.  Call NHS direct, message go to hospital.  Local Hospital.  Suspected stroke. Tuesday it is getting worse, Right arm gone now, MRI scan comes- result clear. No stroke. The doctors are at a loss.

The phone rings at midnight, she’s leaving the local hospital, bound for ICU. Intensive Care Unit.  Those three letters are going to mean a lot to us now.

Wednesday. We have a diagnosis, Guillain Barre Syndrome, GBS for short.  And hell begins.

This is new territory for us.  Jennie, wife, mother, grandmother is now on a ventilator. Her anti-bodies are fighting at her muscles. She is effectively paralyzed and cannot breathe unaided.  She is trapped in a body that isn’t working.  Her mind is active, she can currently communicate only using her eyes and basic facial expressions.  She’s had immunoglobulin – clean blood to replace the nasty blood.  It is now a waiting game.

And thus the blog starts. By all accounts it is a long haul; there’s support out there, but this is our story of making sense of it.

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