March 26th marks Purple Day, a day to spread awareness and shine light on the condition I spend everyday living with…Epilepsy. For me this year it has double meaning as it is also Mothers Day in the UK, so I will be spending my second mother’s day with my precious baby Boy. To mark the occasion myself and other epilepsy bloggers that I know have decided to write a series between us titled “Don’t Fear the Purple” looking at how epilepsy has shaped our lives and the positives we can draw from it. If you enjoy the blog look for #PurpleTogether to read others inspiring journeys.
In all honesty as I sit here writing this I struggled, mainly because my hip and shoulder are in quite a bit of pain after a seizure last Sunday and I am still really tired, but it is something I have spent a lot of time thinking about, so I am splitting this into two areas, what epilepsy has taught me and the things it has made me thankful for.
What has epilepsy taught me?
Strength – hell has epilepsy taught me about strength, not just my own but my purple family and my own family and friends. Somehow living with epilepsy has taught me to dig deep time and time again, hold on when the ride gets rough and pick myself up when it’s done. It’s not easy but I do it as do my purple friends. Its taught me about my own family and loved one’s strength. This condition affects them all too, and at the times they are the most scared their primary concern is me and only me. I’m blessed to know such amazing people. And as Chris sits and watches the boxing I’ve been picking his brains as to what to write. Chris said that if there’s anything I should take personally as a positive from my epilepsy is that it’s made me the strong woman I am today (his words…). That he is proud of the strength that I show on a daily basis when I get up and do all the things that everyone deems “normal” even when I’ve had a wobble or in the case of last weekend a full-blown seizure. He also told me that my strength from the epilepsy comes across in other parts of my life and personality. He’s reminded me of how determined I am, that when I get something in my mind I’m like a dog with a bone and won’t rest until it’s done.
Weakness – This is a funny one but Epilepsy has taught me itsok not to be ok, and not to give myself such a hard time when I don’t feel amazing. That as much as at the time it doesn’t seem it, those moments always teach me something, and again they show me how utterly blessed I am to have the friends and family I do. Its taught me that even though Epilepsy is my weakness I can still live the life I want (within reason) that a weakness doesn’t mean you have to stop, you just change the plan slightly :)
Honesty – It taught me to be honest not only with myself but with my friends and family, that I can say “Ok I need to stop now.” This one took a while but slowly I am learning to say sorry I need to cancel plans because to be honest I just don’t feel that great. I’ve learnt its best to be honest with people about epilepsy because not only does that mean I am safer, it means spreading awareness and educating people which can only ever be a good thing!
Compassion – I’d like to think that I would have been a fairly compassionate person even without epilepsy, but I think that having epilepsy has given me the insight that you never really know what someone is going through, to be kind because it costs nothing to do so.
About my body – I have read more than I ever thought I would on this condition, more than that I have learned the vital signs my body will give me to warn me to slow down, that a seizure is coming. Our bodies are incredible and I am finally in tune with mine.
What am I thankful for?
This was a hard one, but there are 4 things that I am thankful for that I probably wouldn’t have done or got if it wasn’t for epilepsy
My blog – so as you know I started this blog to tell my story whilst pregnant with epilepsy. So if it wasn’t for the epilepsy I would never have started my blog, met all the people I had and have this wonderful documentation of my time carrying Noah.
Running – I started running as a release, to show myself and my epilepsy that I wasn’t controlled by the condition that was back in 2011 after the worst period with my epilepsy up to then. The running allowed me to feel free and not trapped by my epilepsy. What started as a few “short” runs turned into me running two marathons (three by the end of April!!!) and finding something that has turned into one of my biggest passions. It completes me, and I may never had started had it not been for the epilepsy or my friend (who I knew via the epilepsy) suggesting it.
My Purple Family – The biggest positive for me from my epilepsy is 100% the friends I’ve made because of it; I take my hats off to the guys I have met via the epilepsy, they have become my virtual friends and real life friends, from those in the early days at ESUK right through to the girls I admin The Seizure and Epilepsy Support Group with (https://www.facebook.com/groups/324889234525834/) come and join us if you need support and The Epilepsy Bloggers Network (https://www.facebook.com/groups/182278502175837/) join us if you blog. The girls are my lifeline so often now, My “E” friends are there for when I need an insider view, one that Chris or Steph could never give me. You guys help me be strong in the face of my epilepsy, you show me compassion which in turn builds mine for others, you’re honest with me with again makes me be more honest with myself and others, you are all special to me and help me in ways you will never truly understand. And to Clair who gives me the glimmer of hope that Noah wont be an only child – I thank you for your time and understanding on a subject so personal.
Alex – Last but by no means least, who I would never have met if it wasn’t for epilepsy. If there’s one thing I’m truly thankful for because of my epilepsy it is her. She has been my rock and my anchor, my release and my wings, picked me up when I hit the ground and so many times stopped me before I sunk that low. You’ve believed in me when I didn’t believe in myself and you’ve kept me in check when I’ve needed it (keppra rage – enough said!) I couldn’t imagine my life without you but I’d give you up in an instant if it meant you didn’t go through what you did that brought us together in the first place.
So please guys take a moment and read up a little and read the stories of the guys who share their lives in blogs too, they are all awesome!
My names Faye, mostly known for being a tea addict and keen runner and swimmer. I'm 32, married and I had my 1st child in June 2015, oh and I also happen to have epilepsy. This is my story of Pregnancy, Motherhood & Epilepsy.