Wednesday 8 January 2014

Poem I wrote to help me rise above.

Freedom comes at a price,
My illness is my cage,
My tormentor, abuser. 
Looming over always ready to strike. 

It's hard to comprehend,
With the darkness in clear sight,
I want to be me...I want to fight. 
Tiredness beyond words,still searching for light. 

I look at them,at him...they are my light. 
My reason for being. 
My reason to fight. 

So life has changed forever more,
But for them I would always endure. 

Keep focused,keep strong,you're not alone...even at your darkest. Remember YOU are still YOU 
Your fight defines you...make it through. 

Love always. 


Sunday 5 January 2014

Most wonderful time of the year!

Happy new year!!!!

This Christmas has made me realise whilst others are celebrating and spending time with their loved ones-lots are suffering much more with this time of year...it's party season. Yet it can be an isolating time. I know with new year gone I have been left with an empty feeling in my tummy. 

Reach out and know you're not alone...I've put my energy into positive things like setting up fundraising pages for African Pygmy hedgehogs (animals close to my heart). 

In terms of my epilepsy,not much has changed. I'm still sat here waiting to hear and feel let down by a system with waiting lists and no priorities. 
I have been told some seizures are happening because of stress and fear-how is this meant to change?! When life IS stressful! You're made to feel like you're crazy when I fully believe this a natural human response to the condition. I mean who wants a seizure in public or in front of their small children. 

Sadly I had some cluster seizures in December witnessed by my son. He thought I was dead. This hurt me deep inside. Trying to explain to five year old about a health issue isn't easy. 

Seizures two night ago. Whilst I slept...contacting the epilepsy nurse and hoping to see a neurologist privately. 
Also find out when my pacemaker can be fitted to be MRI compatible. 

The main thing is-I've realised I'm not alone. I have the support network. I'm lucky to have a wonderful carer and partner. A wonderful family and my big sis is getting married in February. So finding joy in lots and leaving the negative in a box,tucked safely away. 

2014 will be the year I finally fight epilepsy. 

Good luck to you all.