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

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.

Moving too fast

Photos above are anything and everything food related from my phone, as the camera is at my Mum's - a peril of being without permanent abode I'm afraid!

Once again I find myself compelled to start with an apology for a gap in writing. It's not that I've not been cooking, far from it - but circumstances seem to conspire against me being settled, and able to cook, write and post on a regular basis.

To explain further, shortly after mine and Jess' enchilada extravaganza, my ex-flatmate decided that she wanted to live by herself. Which is fine. But put me under pressure to find somewhere new to live in my local area at a time when there was (and is) just little movement in the rental market. Obviously as regular readers are aware, I need to balance my needs as a disabled woman with ensuring continuity for my Guides and Brownies, and of course I work in the Public Sector at a time when there is less job security than ever. Not a good combination with trying to find somewhere new to live, continuing to be productive in my job, and volunteering. So life has not been easy, I have been travelling the length and breadth of London on a regular basis, carrying my life on my back (I know! Bad plan for starters) with most of my possessions in that vague, uncertain place known as 'storage'. My favourite roasters, utensils, plates and cups, all packed away in copies of the Metro and taken away in a lorry.

Anyway, I haven't been as unfortunate as that suggests, I have a lovely boyfriend, who puts up with my need to completely take over his kitchen on a regular basis, and who in actual fact reminded me this morning that I needed to write something for here. My mum has turned a blind eye (and surprisingly, eaten) much of what I've turned out in her (far nicer than anything I'm used to) kitchen, including encouraging me to make the trifle for the Christmas dinner - more on this later too. Hopefully.

So, with support and help I'm getting along. As with many people with a long term condition my health has been seriously affected by the uncertainty and change I've been coping with. Regular seizures, a horrible bout of flu, and sinusitis have kept me indoors and largely aleep since November. Whilst I live in eternal hope of healthy stability, I'm also developing some patience (anyone who follows me on twitter and who is party to my frequent rages/ grumps/ whining about my health can roll their eyes here) with my health and trying to expect less of myself, and judge myself less harshly. Interestingly, with support I'm learning to rest more, to let other people pick up things and not try to do everything myself. It's hard to admit that as a young woman you need support but I'm getting there. It's interesting the lack of support that is available from the Public and Voluntary sectors in these economic times, and the expectation from Adult Social Care that friends and family will act as unpaid, unsupported carers just because one's needs are 'moderate. Although how 'moderate' and homeless sit together I will never understand!

Anyway, before I get up on my soapbox - naturally an adapted one ;-) - I'll tell you a little bit about my foodie exploits these past months. If that's OK?

Well we've had 2 pack holidays with the Brownies, and have done lots of cooking - the usual baking, but also from scratch meals as well. The girls universally enjoyed cooking 'normal' meals as well as fairy cakes, caramel shortbread, and 'armpit' fudge. I'm without camera at the moment but will endeavour to add that post later this week.

I've been involved with Sainsburys a little as a part of the launch of their Christmas freefrom range - I was invited to Christmas dinner with some lovely other bloggers and had the pleasure of sampling some lovely gluten and dairy free recipes and products. As well as the Taste the Difference wines and traditional lemonade. Both of which were gorgeous. The evening itself (and the tiramisu I made with the Gluten Free Mrs D were lots of fun, and one of my aims for 2011 is definitely to get involved more in the blogger community.

Sainsburys also sent me some of their Taste the Difference mincemeat to test early in December and I duly made mince pies for my boyfriend's father's birthday. I have to say these went down a treat, and I used up some pastry cases I had lying around after catering my sister's hen do as well as making my own pastry (top tip for pastry for mince pies - use orange juice instead of water to bind). Which does mean my dear readers that I have finally beaten my pastry demons. I am so proud!

Just before Christmas Kavey of Kavey Eats asked on twitter for our Christmas loves and hates, I very honestly admitted that my mother's 70's tastic trifle was a big hate for me, but that I didn't know how to broach that with her. Now I'm pretty sure that my mum doesn't read this (or twitter) but oddly enough she asked me to make the trifle this year, and I was allowed to deter from the typical tinned fruit in jelly, set custard with dream topping affair and make a spiced fruit trifle that wasn't dissimilar to my summer fruit fools last year.

What else is there? Mabel has been sorely neglected of late, so I'm going to give her a good feed tomorrow night, and with any luck (cross your fingers for me that she hasn't expired) and hopefully introduce my boyfriend to the world of leavened bread next weekend.

My skills with leftovers continue - this Christmas my turkey and ham pie spawned a recreation with chicken and leeks that has become a firm favourite in the repertoire. Oh and the addition of a slow cooker to the boyfriend's kitchen equipment has meant that I am casseroling with aplomb and an alarming frequency.

So that's where I am and what I've been up to of late, I hope it doesn't make for too dull reading. I'm hoping that 2011 has some stability in store for me, not least as I have a kind of plan in my head that would allow me to extend my cooking adventures out to a wider audience , but I'm not sure how one goes about making a job/ business out of what we love. Advice, mentoring and guidance is gladly received at this stage as my capacity for thought in a head that's full of flatshares, what's in my rucksack, and planning a Guide holiday that I've faithfully promised them yet utterly failed to organise!