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.
