My Story-edited March 2022

I suffer from the 'invisible disability' Epilepsy!

My epilepsy is caused by lesions on the brain called cavernomas. These are inherited so other members of my family are also epileptic. 

I had my first seizures at 21 and for 20 years my medication controlled my seizures.....apart from when I decided to go out and party, drink, not sleep and still go to work!! Then I would wake up in a hospital bed after many seizures! But when I behaved I was mainly o.k. At this time I had one cavernoma. 

At 40 my seizures increased and changed and each year more cavernomas were found and at last count I had over 20 and have had 3 bleeds from them.

They are all in different areas of my brain so I have all types of seizures and many of them you would not notice but.......I sure feel them!

I have now been told by neurologists that they can't control my seizures but are just working to improve the quality of my life.

I have roughly 10 seizures a day now and memory loss, tiredness are all part of my day. 

My life has become so restricted and I haven't worked for years. I now don't travel alone and my life is controlled around medication and recovery from seizures.

However....I get up each day and refuse to let them beat me! I do what I can, when I can.

Although this condition has taken much from me, it has also given me the chance to meet friends through this wonderful crafting community. I have friends I talk to each day from India, America, Europe etc....actually talk to via Whatsapp....we record messages and then we can all reply when we want...time zones make no difference when you can do this!

I find it hard to write long emails so this is a great way to keep in touch.

I have friends within this community I have met IRL and been to visit too....very, very special.

I ran the challenge Time Out for over 7 years and had a super Design Team and so many loyal players. I loved running Time Out-it helped me keep my ' Manager, business, organisation' brain satisfied....I had never done anything creative before. It was my dear cousin Lynn who introduced me to card making and here I am now-thank you Lynn! 

Over the last year my seizures have got worse and therefore my memory loss, concentration etc and I had to hand over Time Out but it still is going strong!

 I started off as a Teacher but was a Manager for most of my career. I loved seeing and nurturing the potential of the people I taught and those who I managed.

And just to visit your blogs and you to visit me, means the world to me.

So Epilepsy has changed my life but through it I have met you all and so there is a silver lining to everything!

Here are a few images that I think help to explain.

Thank you for reading this, it means a lot.

    

   

And to my dear, dear husband:

And to me as I tend not to follow this advice but perhaps seeing it here....I might!

This also goes to all of you are struggling in anyway and just need to breathe today and start over tomorrow x