And all shall know, the song of Purple summer: International Epilepsy Day

Photo credit: Mark Reader

Or Purple day as it's also known (hence the somewhat tenuous link to a song title) Although, Lauren Pritchard who originated the role of Ilse on Broadway, and I both have Epilepsy, so not so random. For once. 


Yes folks it's that time already (are the years getting shorter or am I getting older) Today in International Epilepsy Day, where we try to raise awareness of Epilepsy as a condition without focusing on the limitations, but instead on what those of us with epilepsy can, and do achieve. 


For me, epilepsy is referred to as Brian. My very own, personal Gorilla. As written about here  and also on the BBC Ouch/ Disability forum. I won't reproduce all of The Gorilla in my house here as you can read about it on Batsgirl's blog, but every time I read it, this paragraph resounds particularly pertinently to me:

"The gorilla in your house will cause problems in every part of your life. Your spouse may decide that (s)he can't deal with the gorilla, and leave. Your boss may get upset that you've brought the gorilla to work with you and it's disrupting your colleagues, who don't know how to deal with gorillas. You're arriving for work wearing a suit the gorilla has slept on. Some days you don't turn up at all because at the last minute, the gorilla has decided to barricade you into the bathroom or sit on you so you can't get out of bed. Your friends will get cheesed off because when you see them - which isn't often, because they don't want to come to your house for fear of the gorilla and the gorilla won't always let you out - your only topic of conversation is this darn gorilla and the devastation it is causing."

 Brian does have a tendency to sit on my head. 


However, as I posted last year, that doesn't stop me achieving. Sometimes I do need alterations and adaptations to ensure I'm on a level playing field with everyone else, but I manage. I achieve:

• GCSEs
• A Levels
• A degree in English & Drama (2:1)
• CTP in Learning & Development (distinction)
• GirlGuiding UK's Adult Leader Qualification for Brownies
• I can ride a bike
• I can run
• I can swim
• I can sing (I was a Bishop's Chorister don't you know)

All achievements I am hugely proud of. I have also been asked to be Godmother to one of my dearest friends' son. I am so proud as to me that is a huge honour. I also work full-time, blog part-time, volunteer. I live, I laugh, I love. I do the same as you, except I occasionally have a gorilla who sits on my head. And bounces. 

Epilepsy doesn't stop me achieving. I firmly believe that if I set my mind to something I will get there. Take this blog. Last year I started to really take this seriously, to post regularly, to work hard, to take up PR offers to make it better. To really get the message out there that cooking is accessible, using good quality ingredients doesn't cost the earth, and that home baked cake is just better. In return I've seen my readership escalate steadily, my rating on the wikio and most recently the Foodies 100 do the same. And I've done most of that with a chronic migraine (thank God for Dragon)

You might not know anyone with epilepsy, but you might. Do you know how to support that person if they have a seizure? Do you know about the different types of epilepsy? If not, have a look at the Epilepsy Society's website. I'm treated by them and the difference it has made to my life is immense. 

So this year I'm building on that with your Top ten first aid tips when someone has a seizure:

1. Stay Calm
2. Look around - is the person somewhere dangerous? If not, don't move them. Move furniture or similar objects away from them
3. Note the time the seizure starts
4. Stay with them. If they don't collapse, but seem blank or confused. Gently guide them away from any danger. Speak quietly and calmly
5. Cushion their head with something soft if they have collapsed
6. Don't hold them down
7. Don't put anything in their mouth
8. Check the time again - if a seizure where someone is shaking (convulsing) hasn't stopped after five minutes, call an ambulance
9. After the seizure has stopped, put the person in the recovery position and check their breathing is normal. Check their airway isn't blocked. If their breathing sounds difficult - call an ambulance
10. Stay with them until they are fully recovered. If they are injured, or have another seizure soon after the first. Call for an ambulance

Epilepsy Awareness week: Information & empowerment

Sorry all, no food here. Safe to say I'm posting with a coffee and a bun though, and I'll see if I can find some gratuitous cake shots for you at the end.

This week is Epilepsy Awareness week, the Epilepsy Society where I am lucky enough to be treated have set the themes as education and empowerment. I am lucky these days, in that I am well controlled, I am compliant and I have an amazing Epileptoligist at the Epilepsy. Doctor Koeppe is my hero - is unfailing faith that I will be totally controlled, the beam when I said I was thinking about starting a family in a year or so. In his eyes nothing is impossible. Epilepsy is not a barrier to me achieving. Sometimes I need reminding of this.

I work, full time.  I am good at my job.
I take medication
I am a Guide and Brownie leader.
I swim
I do yoga
I love to bake (as well you know)
I walk.
I have annoyingly frizzy hair
I love nail polish
I wear glasses
I can do the clapping to Eidleweiss with my eyes shut
I have climbed the Sydney Harbour Bridge
I sleep a bit more than your average bear
I hate ironing

Epilepsy doesn't stop me living a perfectly normal life. I just adapt things occaisionally to help that happen. At home I have a non slip mat in the shower. Chairs that I can sit on at the cooker, I don't have a gas cooker, my hob has a safety setting to switch itself off. I have non slip grips under my rug. At work, I sometimes have a rest at lunchtime if the day is stressful or I am not sleeping. I ask for support when I need it. In Guiding I try to have an extra leader for ratios so I can have a sit down or a nap if I need one.

My friends are amazing. None judge me, treat me any differently for having a fluctuating health condition. At school this wasn't always the case, but with love and support y'know I eventually got through that. Being diagnosed was a slow and difficult process for me, but that was about 20 years ago, be demanding, ask for second opinions, and push. If you know something is wrong then keep asking questions.

Keep a seizure diary. What, when, how long, if you suspect there was a trigger what was it?

Some things I would say - please know what to do if someone around you has a seizure:

http://www.epilepsysociety.org.uk/AboutEpilepsy/Firstaid/10firstaidstepswhensomeonehasaseizure

1. Stay calm.
2. Look around - is the person in a dangerous place? If not, don't move them. Move objects like furniture away from them.
3. Note the time the seizure starts.
4. Stay with them. If they don't collapse but seem blank or confused, gently guide them away from any danger. Speak quietly and calmly.
5. Cushion their head with something soft if they have collapsed to the ground.
6. Don't hold them down.
7. Don't put anything in their mouth.
8. Check the time again.
If a convulsive (shaking) seizure doesn't stop after 5 minutes, call for an ambulance.
9. After the seizure has stopped, put them into the Recovery position and check that their breathing is returning to normal. Gently check their mouth to see that nothing is blocking their airway such as food or false teeth.
If their breathing sounds difficult after the seizure has stopped, call for an ambulance.
10. Stay with them until they are fully recovered.
If they are injured, or they have another seizure without recovering fully from the first seizure, call for an ambulance.

If you want to know more about epilepsy - have a look at the Epilepsy Society's website.

My final thoughts are, that if you have epilepsy, adapt your life to live it as normally as possible. If you want to do something, work through how you can do it, don't dismiss it straight off. Be open with those around you, Epilepsy isn't something to be ashamed of. The more we talk about it, the more it's normalised. Don't be afraid of your condition, control it.