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The Daily Mail has done it again. Yes, I realise that I should never be surprised by anything that appears in the Daily Fail, but I can’t help but be shocked that yet again they have equated epilepsy with violent behaviour.

Take this story which appeared on the website today: Epileptic plasterer who ‘killed a banker with a single punch on a night out attacked him “because he felt threatened” after one of his victim’s friends made a comment about his race

Did he punch the man while his limbs were jerking during a seizure? No. Was he dazed and confused after coming round from a period of unconsciousness? No. Does the fact that he has epilepsy have anything to do with his violent and ultimately fatal outburst? No.

He left his job after being diagnosed with epilepsy. That’s it.

He told jurors he worked as a plasterer for about four years after leaving school, but quit work after he was diagnosed with epilepsy following a seizure.

‘I haven’t been able to work. I stay at home pretty much,’ he said.

He’s 31 now, so that’s a long time not to work. Many – or indeed probably most – people with epilepsy work and lead normal, fulfilling lives. Normal, fulfilling lives which don’t involve punching people and causing their death. Epilepsy had nothing, and I repeat NOTHING, to do with that violent rage.

The Daily Mail has form for this. Back in October 2012 I was so incensed with a very similar piece – that gem was Epileptic man stabbed his noisy neighbour to death with a fish knife in row over eviction – that I wrote and complained to the paper. This is what I wrote. I didn’t get a response, of course. The chap in the piece had mental health problems which clearly contributed to the tragic outcome. Again, his epilepsy had nothing to do with it but was just a peg.

Woo, look at those crazy epileptics! They are mentally ill! Maybe they’re actually possessed by demons? We’re all going to catch it! They’re going to kill us all!

Right, people?

As I wrote in my previous complaint:

  • The term “epileptic” is used in the headline and copy as almost a justification for this man’s violent behaviour. In fact, his having epilepsy was of no relevance to the story whatsoever.
  • Relating this man’s violent crime to his epilepsy only serves to reinforce ill-informed prejudices and the unnecessary stigma which people with epilepsy incredibly still face. If he had had asthma, would the headline have been “Asthmatic plasterer […] “killed a banker””?
  • Don’t get me started on the use of the label “epileptic”. As a person with epilepsy, I refuse to be defined by the condition. It’s just a very small part of who I am – I am not “an epileptic”. In the same way that people would surely not refer to a “Downs Syndrome baby” in this day and age, it would be fantastic if people with epilepsy could be granted the same respect.

I know I shouldn’t give the Daily Mail the oxygen of publicity but this really grinds my gears.

This kind of unhelpful media representation only serves to reinforce the stigma and prejudice which sadly still exist. No one needs to be ashamed of having epilepsy.

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My 13-month-old son is currently recovering from a hypospadias repair – aka a little operation on his willy – at Birmingham Children’s Hospital. He has amazed me with his resilience and doesn’t seem to mind that he has a dressing on his privates and has been weeing through a stent for nearly a week.

I’m not going to go into it all here (I might do a bigger post on this at some point once he has fully recovered) but I just wanted to share my top tip for managing post-operative nappy changes.

You are told to put your little one in two nappies. Against their body, they wear one in their normal size with a hole cut in it for their penis, with a nappy one size larger over the top. The first catches the poo and keeps it away from the dressing and stent, and the second absorbs the urine dripping from the stent.

nappies

If you’re anything like me, your first thought is going to be “how on earth will I know where to cut the hole?” Let me tell you, the answer is Aldi Mamia nappies.

C normally wears a size 4, and it just so happens that there is a little purple elephant in exactly the right spot. Cut out the purple elephant, put some micropore tape around the hole to keep the absorbent inner of the nappy away from their willy and Bob’s your uncle.

I won’t deny that the first few nappy changes after his operation made me feel quite dizzy and peculiar, but it’s incredible how quickly the strange becomes normal, and now we just get on with it. Fortunately we’ve only had to wipe poo off the dressing once (so far!)  and we’re now dab hands at poking his willy straight through the hole without catching the stent.

No one wants their child to have to have surgery and it’s always going to be a stressful time, so I hope this tip about Aldi nappies will help other parents cross one worry off their list.

 

 

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Cara Coles bookIf you’re newly diagnosed with epilepsy and looking for medical information about your condition, this isn’t the book for you.

However, if you’d like to read an intensely personal account of how Cara Coles came to terms with her diagnosis – and eventually began to see it in a positive light – give Living and Copying with Epilepsy, My Way (2015, Soul Rocks) a shot.

Shocked by her seizures, British healthcare worker Cara decides to use the law of attraction and positive thinking to prove that she can have whatever she wants out of life, no matter what.

She writes a list of wishes, from getting her driving licence back to meeting her favourite band – I would love to know which band, and what happened on the mysterious sixth tour date that “we don’t talk about” – and publishing a book, and trusts the universe to deliver.

It’s an easy book to read, with the short chapters giving it the feel of a series of blog posts. Although this isn’t the case, it does seem a bit like a self-published vanity project, and it’s quite repetitious in places with some odd asides.

Having said that, I did enjoy reading it. I have epilepsy myself and recognised many of the stages she goes through, from the fear of having a seizure in public to the profound grief of losing your driving licence and hence your independence. I too went through a period of being afraid to go to sleep in case I had a seizure. It was a great comfort to read about the emotional impact of having epilepsy and feel that I wasn’t alone.

Given that the theme of the book was the law of attraction, I was concerned that at some point she was going to trust the universe to deliver a cure for her epilepsy. I was glad to see that she trusts her neurologist’s advice throughout and doesn’t advocate throwing away your medication and hoping for the best.

Cara’s sincerity shines throughout the book – she clearly believes in the law of attraction, that “like attracts like”, and presents a convincing case. Even this sceptical reader felt inspired to think about clearing out the spare room to release the blocked energy within.

No matter what you think about the book’s central premise, you can’t deny that it would be a better world if more people considered the power of gratitude and kindness. And this is something everyone could benefit from, with or without epilepsy.

“It’s still your life: how you live it is up to you. You are who you are; you are not who your illness says you are.” Cara Coles

* I received a free copy in exchange for an honest review.

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March 26th was Purple Day – the international day of epilepsy awareness – and I was privileged to be able to share my story in the Birmingham Mail that day.

I talked about the shock of being diagnosed with epilepsy at the age of 20 and some of the feelings I wrestled with at the time and later, as well as the precautions I took to minimise the risks to my unborn child when I was planning to become a mum.

Ever since it went to press I’ve been thinking of other things that I wish I’d said, so here are a few extras for you:

I got some positive comments on the Mail’s Facebook page, although a few people seemed to think that I couldn’t truly speak about epilepsy as my seizures are controlled. To which I say, yes, I know I am among the fortunate 52 per cent of people with epilepsy who live seizure-free – and I know that many people face daily struggles that I am lucky to avoid.

However, I hope that my story can be seen as a giving a positive take on living with epilepsy, and shining a light on an often misunderstood condition, but one which is surprisingly common (one in every 103 people in the UK has epilepsy).

Click here to read the full feature.

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The Fitbit Flex appeals to my love of statistics and has managed to get me moving

No one would ever describe me as a sporty person, so my decision to spend my birthday money on what is effectively a pricey pedometer surprised a few people.

But the Fitbit Flex is so much more than just a step counter, and has helped kickstart a more healthy lifestyle which will hopefully see me finally lose that pesky baby weight (can you still call it baby weight when your “baby” is nearly two?).

Worn on the wrist, the Flex tracks your steps, distance, calories burned and even your sleep patterns to give you a rounded picture of your daily activity levels. It displays your progress towards your chosen goal using a series of five small LED lights (20 per cent increments) which appear when you tap it.

Fitbit FlexThe Flex just looks like a plain black band which I wear on my non-dominant hand against my watch. It comes with two sizes of strap and you can buy different colours if you want to make it more of a fashion accessory.

I’ve had mine for a month or so now and the first thing that struck me was just how inactive I am on some days. On my working days I can sometimes sit at my desk for hours with barely a break. I was shocked. Seeing the harsh truth displayed there on the Fitbit iPhone app (it syncs with its app via Bluetooth) made me think twice about how I spend my time.

On the flipside I was excited to see that I walked more than 21 miles during a two-day visit to Oxford. I was so proud of the first day that I took a screen shot of the grand total for posterity.

Fitbit record day

Some days I even find myself walking round the house unnecessarily to get my steps up and feel that joyful little buzz that it gives when I reach my target. It’s definitely a great motivator.

The Flex has a silent alarm function to wake you without disturbing your bed-mate, but I haven’t tried this out as I have a child who already does this.

It is interesting to see how much sleep I actually get (you put it into sleep mode when you turn out your light and wake it in the morning), although I’m not sure what to do with the information that it takes me an average of six minutes to fall asleep. I’m quite happy to have information for information’s sake though and I enjoy taking a look at the charts on the Fitbit website’s dashboard. I wish you could access a bit more of that via the iPhone app.

The battery lasts for almost a week and charges fully via USB while I have long soak in the bath – no step counting required for that activity.

My one bugbear is that I am not sure how accurately it logs all those steps that I take while pushing a pushchair. I’ll be walking into town without the pushchair tomorrow though so I’ll be able to compare it with the results I normally get.

I’m not sure whether it would really meet the needs of a more serious fitness fan, but since spending my £79.99 on the Fitbit Flex I have definitely paid more attention to my activity levels. I’ve even started jogging regularly and am thinking of entering a 5K. And that would have been completely unheard of just a few weeks ago. Thanks, Fitbit.

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