National Epilepsy week: Everyone knows someone

There seems to be a week for everything these days doesn't there? According to our local bakery it was doughnut week last week (how did I miss this?) Other bloggers are doing National vegetarian week posts this week, and I'm personally championing National I've lost my flip flops and driving M mad by turning the house upside down in search of them week. Although with any luck that'll draw to a fairly early close.

Seriously though, it's National Epilepsy week - this year's theme is Everyone knows someone - One in a hundred people in the UK have a diagnosis of epilepsy so whether you measure your life in a friends list or an address book it's likely that there's someone in there with the condition.

Epilepsy isn't something I feel I 'suffer' with - it's certainly something I live with and affects many aspects of my day to day life - from bathing to birth plans and everything in between. It's frustrating for me and those around me when I'm limited by the condition and at the same time wonderful when it doesn't stand in the way of many many wonderful days (see photo above)

I do wonder however, if everyone knows someone, why is there so much stigma around epilepsy? Why do people think it's OK to suggest 'throwing your medication away' or that supporting you is too much like hard work? Why do people ask the First Aider supporting you if 'she's on drugs?' All these small minded judgements hurt us - and everyone I know with epilepsy has their own tale to tell, of discrimination, being sidelined, overlooked, misjudged, hurt and ignored. I would ask that if you're reading (and please do share) this post that you look at those around you and consider the sensitivity with which they approach the person they know. Have you ever talked to them about how they would like you to support them if they had a seizure? Do you know what's important to that person? Why not make it your mission to find out - make a pot of tea, crack open the chocolate digestives and ask.

Working on that 'everyone knows someone' basis - would you know what to do if that person had a seizure? Do you know what their seizures look like? Remember that not everyone has the stereotypical seizure we see on the tv or in films where they fall to the floor, and have jerks. For those tonic clonic seizures (or any where someone loses consciousness) here are the current guidelines for how to support someone (taken from the Epilepsy society):

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 (dial 999).
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.

Importantly, that person you know may not have seizures where they lose consciousness - here is the guidance for First Aid for other seizure types.

Today more than ever I'd appreicate it if you would share this post - National Epilepsy week is understandably close to my heart, but with epilepsy affecting 1 in 100 of the population, it's not just me - let's see what change we can affect by increasing awareness, reducing stigma and just being a bit kinder to each other.

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