My Story

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 run the challenge Time Out and have a super Design Team and so many loyal players. I love running Time Out-it helps 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! 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








15 comments:

  1. You brave and wonderful soul to struggle yet continue in the face of adversity. It seems to me you have a wonderful support network and long may it continue. Take each day as it comes, continue to be strong and mostly importantly at present... Stay safe and well from viruses x

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  2. Hi Sandie! Love that you talk about Epilepsy and also have a challenge about it. I also suffer from Epilepsy but not as much as you do. But I can relate to everythink you descibes here and I think we have wrote to each other about this many years ago (but my memory isn´t good so maybe I´m mixing things up here). I will for sure participate in your purple challenge and I hope it is ok if I "borrow" some of your images you posted here. Thanks so much for talking about this!!! <3
    Hugs Åsa

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  3. My eyes swelled up as I read your story, Sandie. I remember that night when I witnessed a girl having seizures and no one around knew how to help her! From that night to today, I think I am better human, more responsible and of some use, after I read about it and when you helped me understand that seizures can be of various type too. Your kindness and love has touched so many of us, I can't even tell you! I hope that I get to meet you some day soon. May be I'll plan a trip, just so that I can meet you and Callum. Thank you for all that you do, watching you run TO, I have learnt to manage my things better than I did before and am so thankful for that. You are an angel that God sent for us, to spread love and learn from. Love you loads 💜

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  4. What a powerful story and powerful post. Heartbreaking also. You are so very strong and brave, and I feel I am a better person for knowing you. Thank you for sharing your story. XOXO

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  5. Thank you for sharing your story, Sandie. I applaud you for your courage and your strength to go through this every day and still be upbeat and so thoughtful when you comment on people's cards, including mine. I pray that you will continue to live your best life, whatever that may look like, and that you stay safe and well. Love and Hugs.

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  6. Sandie, as I read your story, I think you are stronger than most of us. When you said you get each day to refuse epilepsy beat you, i know it comes from a passionate courageous woman. Salute!! It is definitely not easy but you are very kind to encourage the young crafters like me ❤️ thank you for spreading love.. Wish you all the best, hope to meet you someday.. 😊 😊 This challenge is very special to me..

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  7. You are a woman of strength, and grace, and beauty. I admire your spirit and determination beyond words, and I am very extremely grateful that our paths crossed in this world of creativity. It is an honor and a joy to know you. Much love, S.

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  8. Bravo, my brave friend! Sandie, you continue to inspire us all daily! Thank you so much for all the kindness you've sent my way! Keep on Keepin' on, girlfriend!
    love and hugs...
    =] M

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  9. What a great post! You are a very strong person Sandie! My heart goes out to you! My sister has Epilepsy so I understand a fraction of what you are dealing with. She has had it nearly her entire life. My childhood memories of her having grandma seizures are etched vividly in my memory. Thanks for opening your life to us! Big Big hugs!

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  10. My eyes filled with tears after reading your story Sandie... You are definitely a woman of strength. I have witnessed my cousin sister having seizures , I was quite young at that time and it was really painful for her and as a kid I was totally scared. I have no words to explain my feelings.. my heart goes for you.. A big super big panda hug to you. You are a Gem.

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  11. Prayers being sent for you, and blessings because that's what you do for us! We are fortunate to know you and blessed to be in your circle. I have experienced seizures, not me but someone close so I know the fear, confusion, tiredness and the fact that they are different.

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  12. Thanks for sharing your story..you are an inspiration! It was helpful to know a little more about your condition! My niece has had seizures but blessedly hers have been controlled by medication. She learned the hard way when she didn't take it! God bless and I hope you continue to be a champion for your illness and thank you for your creativity!

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  13. WOW! Thanks for sharing, this is so great to understand your condition and what you are living with on the daily. How awesome are you for being able to craft and run a challenge with all that is going on with you. Cx

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  14. Oh Sandie, I didn't realise the half of it. I'm so sorry you're having to deal with this every day but I certainly admire your spirit. You are an inspiring, courageous superstar. I'm beyond impressed that you run this challenge with such a big heart. Your personality shines out of Blogland and it's a privilege to be able to join in and feel a part of it. Sending hugs, Vicky x

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  15. Dear Sandy, I had no idea how serious your health issues are. You are truly an amazing person with dignity, courage and kindness. You are always so kind and supportive of my work and I have enjoyed out interactions. I love joining in your fun challenges. Please take care. Sending lots of love and hugs. Helen xx

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