Rain + sunshine = a rainbow

Reading The Narcoleptic's wife blog made me feel a multitude of emotions.  The sadness came first.  Sad that it took me 10 years+ of having the internet to find someone who understood, especially when I consider myself pretty computer savvy.  Sad that life events had spiralled to the point where I was clinging on to my sanity and had somehow lost sight of my husband's daily fight.  And sad because I suddenly realised that our life had travelled along in limbo for the last 3 years without me even realising.

It made me feel frustration.  Frustration that his supposed sleep specialist knew less about narcolepsy and cataplexy than I did.  Frustrated at the N.H.S. dragging their feet to prescribe him Xyrem while people were being funded tummy tucks and breast enlargements.  Frustration at the missing support network within the UK.

But most importantly it gave me renewed hope to fight.  The knock on reading made me realise that yeah, life is tough, but there are narcoleptics out there who don't have access to the N.H.S.  Narcoleptics here, who have had a long hard fight to be diagnosed (12 years is the average time in the UK of a diagnsis from the first symptoms) People who have no choice but to live med free because their insurance doesn't cover it.  I can't begin to imagine my hubby without medication.  Every day.  Religously at the same time. Every day.  I'm such a bad time keeper.

So I began to look at groups which had been set up on Facebook.  The first one was full of vitriolic shpeel (maybe the angry members had no meds that day?), the second way more friendly.  The more I read though, the madder I got.  Mad at the stories I read about the hurdles within the N.H.S and the benefit system that narcoleptics had to jump over.  A lady called Lily told her story. She was going for an overnight sleep study.  Lily's tale grabbed my attention, mainly because I realised that she lived in the same catchment area as my hubby. 

Initially I was excited when she told me she was going to a different hospital than my hubby's but the catchment area still concerned me.  I can't remember the amount of times his 'specialist' has referred to my hubby's cataplexy attacks as cataleptic attacks.  Hmmmmmm they sound the same vaguely but are totally different things.  I was faced with a sudden dilemma.  In my off-line life I'm not the most sociable person you'll ever meet.  Lily has suffered from EDS since she was a child, her symptons became markedly worse 12 years ago and this was to be her first encounter with a 'sleep specialist' in this catchment area.  If I made contact, that would mean fighting her corner.  If I didn't then I knew she was likely going into a lions den, unarmed.

I had no choice.