How to get the best out of this blog...

All blogs post are more recent first, if you want to read about Ellie's Journey I'd suggest starting from the first post back in September 2011 (October Posts) and read on Chronologically from there. It will make more sense and you'll get to meet the little girl who gave my life purpose.
Thank You for reading - every new reader shows that she has met another person and in her short life made such an impact. x

Thursday, 19 January 2012

The Dark Side of the Moon

I've been quiet. I've felt quiet,  intoverted and sad after hiding away at Christmas and then starting the New Year  with a miserable failed return to work. I am still 'coping' with my grief, I believe. Panic attacks, tingling sensations in my hands, short breaths, hot sweats, dizziness, disturbed sleep, anxiety, are these anti-depressant side effects or the anxiety? - like most drugs they seem to emulate the problem. 
But it's ok, as specialists and friends, who have read the right kind of books tell me, these things are normal. How come I don't feel normal? I feel almost paranormal - like I'm not in my own body sometimes and that  I'm detached from my brain. Ok, so now I sound a bit crazy.  
My thoughts are never detached from me - they follow me around like shadows. This is the dark side of the moon - the bit people never really see but it lurks there. The horrible stuff - when people probably think 'surely they are getting over things now' I wonder sometimes if this is just the beginning all over again.

While I am still reeling from the loss that Peroxisomal Biogenisis Disorders have taken from me I was further devastated to hear this week of three more children dying from this condition. 
My thoughts go out to my Facebook friend in the UK, Zila Grant who's little boy Khian passed away last night and also another UK family, The Clarks have lost their little girl Emilia only 9 months old, and an American family, The Castaneda's who's little girl Gabriela  just over 2 years of age.

This is such a horrible sad, sad thing. There has to be something that can be done - this condition comes without warning and is the most cruelest of things - people say that it is rare but each individual case may be rare in itself but the condition is all too familiar.
I am dumbfounded - I still just don't get it - how our genetics can screw us over like this. It makes me so mad.