Injection time ~ and a chance to build a few life skills!

I had been thinking a lot about the best way to give Riley her MMR and preschool boosters as to me giving a baby two injections at once seems quite mean but at least they don’t remember it after.  But take a three year old who is just developing her own strong opinions on how things in her life should work and it seems to me like a recipe for disaster.  Added to that the fact that I know vaccinations can make you feel a bit rough I decided it would be better to have them done separately.
 

Then I realised I could time Riley’s MMR with my whooping cough vaccine, it seemed like the perfect situation.  We discussed what would happen at home when I had made the appointment and that we would both be getting injections in a few weeks which might hurt a little bit at the time but would make sure we didn’t get ill.  Riley seemed happy with this and after asking a few more questions went back to playing happily.
 

So yesterday was the day and it was pouring with rain, so after a 45 minute walk to the doctors I was soaked and feeling a bit fed up (it’s days like yesterday when I really miss being able to drive).  As we entered the nurses room the nurse said, ‘did you get my message?’ I said ‘no’ and she explained most people get the two vaccinations done together as it can be quite traumatic for the child.  Riley can’t have her pre-school booster for another few months so the nurse suggested we waited.
 

I explained we had talked about what was going to happen and I wanted her to have her MMR now and pre-school next year (as in a couple of months we would be a bit busy with a new baby) and Riley then said ‘Mummy’s going to have her whooping cough injection first and then I am going to have my injection, I’m a big girl, I’m three’.  I think the nurse was quite surprised that Riley was so clued up on what was about to happen and yet not making a fuss at all.
 

Riley sat on my lap while I had my injection and then snuggled into me for hers.  She then turned to the nurse and said ‘that didn’t hurt and that she didn’t want a plaster because mummy didn’t have one’ and then she chose a sticker with a dinosaur on and explained it looked like Dub (her imaginary dinosaur) and skipped out of the room saying a cheery ‘thank you, bye’.  The nurse smiled and said if only they were all that easy!  Riley then walked home skipping in all the puddles as she went.
 

We’ve always tried to be open and honest with Riley about everything, explaining things to her in as simple a way as possible but without hiding things from her.  I think sometimes people don’t give young children enough credit for what they can deal with and maybe we shelter them too much.  It’s all about giving them the tools and support to be able to deal with what might happen in life – life’s not perfect and does have good and bad bits and part of our role as parents is to equip our children to deal with this and make sure they know they are loved and cared for no matter what happens.

For us my epilepsy means we have no choice but to talk about some difficult situations.  Things like injections are a good exercise for doing this too and I am so proud of how brave and grown up Riley was yesterday. 

Epilepsy & Me ~ BBC Three

Last night BBC Three showed a fantastic documentary as part of their ‘Defying the Label’ season.

The documentary looked at what it was like to live as young person with epilepsy.  It particularly addressed the hidden nature of epilepsy.  Something which I think can be difficult for us to come to terms with but also those around us.

What happens when people can’t see your disability? It’s hidden and can strike at any time, without warning – when you’re walking down the street, in a classroom, at a party or on a date.

The programme looked at four young people with epilepsy and covered a wide range of topics in a short time.

It was also filmed mainly at Young Epilepsy, a place which I know very well from working there for two years and so it brought back a lot of memories of that time of my life too.

Loss of independence

One of the biggest things for me was how closely supervised these young people are.  How can you grow up and lead an independent life when you can never be left alone?

I feel blessed my family have never been overprotective of me.  Even when my seizures were new and much more regular they still allowed me to go off to university.  They must have worried about me, but they never let that show and I am forever thankful to them for that.  I think sometimes we don’t give the people around us the benefit they so much deserve.

I also think we should encourage family and friends to speak out more about their own experiences of the person’s epilepsy.  So many of the problems for people with epilepsy is being limited from doing things because people don’t think it’s safe or don’t know how to reduce the risks. How can we ever change this if the amazing people who support us don’t feel they have a way to talk about how they allow the person they love so much to live life to the full.

Big decisions

The programme also looked at 14-year-old Thomas who was having tests to see if his epilepsy was due to a newly discovered brain tumour.  After many tests it appeared that the tumour was the most probable cause of his seizures – he now has to decide whether to go for the brain surgery which has a 70% chance of curing his epilepsy but risks leaving him with speech and memory problems or to live with his seizures.  

These are big decisions for people so young to face and part of me feels lucky that surgery has never been an option for me – could I make a decision that big?

Stress, anxiety and excitement as triggers

One of the people I related to most was 24 year old Amy, she obviously had no idea when she had had a seizure, the way she was when she came round from her seizures rung true for me, that being confused but not sure why.

She was desperate to live an independent life and was looking for a long term placement, she found The Meath in Godalming and set her heart on it.  Her seizures then got worse so her supervision increased… somehow I could relate to her, doctors put her increased seizures down to her medications but I’m not so sure, I think often the emotional triggers of seizures are overlooked because we can’t fully understand them.  But I know my focal seizures are triggered by stress, anxiety, excitement, it’s a hard thing to accept because all those feelings are part of life, we need to feel them but what do we do if by feeling these intense emotions we end up triggering a seizure?

Driving

The only area I felt the programme didn't do justice too was the issue of driving.  And that is a biggy for so many people with epilepsy.

21 year old Olivia hadn't had a seizure for four years and wanted to learn to drive.  I really felt for her as it seemed like a lot of the people around her weren't supportive of her learning to drive. 

They repeatedly said you needed to be seizure free for three years before you could learn to drive and I think they needed to be clearer about his as the general rule is one year seizure free.  I don’t know whether it was her family who had told her 3 years or apparently there are rare cases where due to being on controlled medication you can’t drive but it was a little misleading and I think will lead members of the public to question people with epilepsy driving after only a year, something we really don’t need.

I really felt for Olivia because it seemed like her family didn't have much faith in her abilities.  It made me feel so blessed to have always had my family fighting for my independence, be it carrying on with the activities I loved so much, horse riding, skiing and swimming to getting married and having a baby.  

It’s a scary thing letting a person you care about so much take risks, part of you wants to keep the safe and as a parent now I can understand that all the more.  But for my family it's always been a case of how can we do this but with the least risk, be it wearing a helmet and body protector riding or getting an alarm when I had our baby.  I can’t thank my family enough for their attitude towards my epilepsy, they are amazing.

If you are looking for information on driving rules Epilepsy Action has some great information here.

You can also watch the programme on BBC iplayer here until 10th September 2015.  Definitely well worth a watch - inspirational young people showing us how to live life to the full with epilepsy.

Would you like to share your pregnancy story and your experiences of being a parent with epilepsy?

Epilepsy Action is building on the Pregnancy Diaries which Riley and me were involved in.  They’d love to hear from new people.

It was an amazing project for me to be involved in.  Nicole who put the whole thing together is so approachable and it really helped me to feel that I was helping making a difference to other women.  I felt very alone during my pregnancy and I didn’t want anyone else to feel like that if I could help it.

You can read the pregnancy diaries here.

So now it’s your chance to get involved.  Drop Nicole an email to find out more campaigns@epilepsy.org.uk

And watch this space, I’ll keep everyone updated as the project moves forward in 2015.

Tap2Tag

One of the people who was presenting at the Epilepsy Action weekend was tap2tag.

Tap2Tag is a new way to carry your emergency medical information.  It uses NFC technology which most new phones now have.  All you have to do is tap your mobile phone against the bracelet or keyring and it will bring up the persons name and an emergency message on the mobile phone.

This simple video says it all:

This is a fantastic product which could make a huge difference to people with epilepsy.  They are also about to release a young child's size wrist band which I will get for Riley so she can wear one in case I have seizure and she runs off.

Epilepsy Weekend For All

I feel really bad as I haven't got round to writing about the Epilepsy Action Weekend for All which I went to last weekend.

The last week has been a bit of a blur, I have just had so much going on, from adoption to seizures, potty training to just being really tired... I have just got so much to blog about but just haven't had the time to get it all down on paper.  So here goes... I will be writing individual posts about some of the topics which were brought up over the weekend so I want this blog to be a short overview of the weekend.

The main thing about the weekend is that it is such an opportunity to talk to others with epilepsy.  It's a chance to catch up with old friends and make new ones.  In day to day life you just have to get on with things, epilepsy affects so many areas of our lives but you just have to knuckle down and get on with things as best you can.

The weekend gave me a chance to hear what other people both struggle with and are achieving.  It made me feel less alone, gave me inspiration to really go for the things I want and also gave me a chance to reflect on some aspects of living with epilepsy.

There was a girl there who has a lot of seizures, but she really inspired me, she doesn't let it stop her from doing so many things, from traveling on her own to riding her horses, it made me realise I need to really go for my dreams.  So the two things I really want to go for this year... training for the marathon and trying to adopt.

It also made me think about the way I treat the people around me, it made me think about the impact my epilepsy has on my Mum and Rich.  I think sometimes I don't think about them enough, I don't realise how hard it is for them.  Talking to people who don't have epilepsy themselves but their loved one does made me think about things a bit more from their point of view.  I think it is something I need to work on.

But generally it was a weekend full of lots of information and fun :)

Finally a buggy with a dead break :)

So it's a bit late for me but finally a buggy manufacturer has done it... produced a buggy which has a dead break built in and the buggy looks fantastic.  Well done Phil and Ted's :)

Here's the key features:

• auto stop braking system: safe & convenient
• 26 riding options to accommodate 1 or 2 newborn babies up to 2 toddlers
• rear facing double kit option
• attach 1 or 2 car seats
• cleverly engineered 'kerb pop' for ultra light handling
• lightweight at just 12.5kg and 59cm narrow
• one hand fast fold & automatic frame lock
• easy adjust tail-free 5 point safety harness with shoulder pads for comfort
• multi height adjustable handle with comfort foam grip
• premium fabric
• deeper, taller & easily removed main seat
• seat back length: 64cm 
• multiple seat positions from lie flat for a newborn baby to fully upright
• follow-the-sun hood with handy storage pockets
• one hand double kit recline
• moldable neck support on double kit (sold separately) for a younger baby
• large shopping basket
• 12” air filled tyres
• durable & easy clean plastic footwell 
• 2-mode front wheel for multi terrain: swivel or lock straight

Here's the Phil and Ted's video... 

now I can see what they are getting at but checking your phone as you push your buggy towards a railway track or adjusting your sunglasses as you walk along a sea wall... seems like irresponsible parenting to me... sort of highlights that any parent can have an accident with their child and actually because we have epilepsy we are more aware of these risks and plan better...

Anyway I'm getting away from the point... this looks like a fantastic buggy and at £449 it isn't ridiculously expensive either compared to other buggies.

And here's the link to the online shop:

http://philandteds.com/uk/Buy/push/navigator-Buggy#.VC2u4PmwL-s

Epilepsy Weekend for All - Southend-on-Sea, Essex 2014

Yeap it's that time of year again!  I am so excited.  Really really looking forward to this :)

So what's happening this year?

Through workshops and discussion sessions, we will be looking at some of the many ways epilepsy can affect daily life. There will also be opportunities to chat with epilepsy professionals over a coffee. Topics will include:

• Planning a family – pregnancy and parenting
• Parents and carers – the challenges and joys of living with epilepsy
• Adults – diagnosis and treatment, relationships, social life, achieving potential and managing risk
• Ketogenic diet – find out more about this epilepsy treatment
• Managing epilepsy – memory, mindfulness, coping with stress, sleeping well and medication issues

There's also loads going on for young people this year:

The challenge for young people over the weekend is to work together and support each other to create films, graphics, music and drama. Working with multi-media professionals you will learn new skills as you share your thoughts and feelings about epilepsy. You can choose from these options:

• Drama – exploring living with epilepsy through performance
• Podcasting – interviewing and recording
• Graphics – designing and printing
• Photography and videography – capturing your imagination
• Editing for audio and video
• DJ – mixing your choice of sounds

Information and discussion sessions:

• For teenagers – relationships, alcohol, getting out and about safely, education, work...and play
• Siblings – a chance to share experiences

Also happening:

• Relax and enjoy a clothed massage
• Family disco and karaoke (and we all know who the stars will be hehe!)
• Keep in touch – photo wall and contact envelopes
• Halloween fun – apple bobbing and snap apple
• Creche
• Face painting

This year the weekend is taking place at the Park Inn by Radisson Palace at Southend-on-Sea. Our special price includes your accommodation, meals and all of the Epilepsy Weekend for All activities. We hope you will join us - book today to be sure of your place!

Prices:

Adult (18yrs and over): £60 each (day pass £25)

16yrs and 17yrs: £30 each (day pass £15)

Under 16yrs:  Free

Twin, double and family rooms are available. We also have a limited number of accessible rooms for those with mobility requirements. Single rooms are not available but we will pair single guests with another delegate of the same gender, or feel free to bring a friend.

Car parking is free but permits must be arranged in advance (residents only). There are excellent rail links, with Southend Victoria and Southend Central stations close by.

For more info and to book your place visit the Epilepsy Action website here

The ups and downs of epilepsy awareness talks

Giving epilepsy presentations is a strange thing sometimes.  I get quite nervous when I do them, but I think they usually go quite well.  But it is amazing how the audience makes such a huge difference. Sometimes the room is filled with people who would rather not be there but have been made to go by a manager!

But this afternoon I went to a really inspiring school who truly wanted to do as much as they can to support a little boy who had what sounded like quite severe epilepsy.   They were working so hard to give him as much independence as possible while keeping him safe considering everything from reading time (where he often fell asleep) to going to the toilet.

I always find it easier to answer people’s questions rather than just talk at them and they asked so many questions mainly about how what they had heard could impact on the boy himself.  They are in contact with the little boy’s consultant it gives them a huge opportunity to help him and I think the training left them with 2 key points which I think are important for everyone:

•         Know what it normal for the person so you know when to seek help
•         Know what’s important to monitor both from a seizure point of view and also the medication side effects.

It really gave me hope that trying to raise awareness of epilepsy is making the world better for people facing its challenges even if it is just one person at a time.

The Crash Reel

I watched The Crash Reel yesterday...

The dramatic story of one unforgettable athlete, Kevin Pearce; one eye-popping sport, snowboarding; and one explosive issue, Traumatic Brain Injury.  A comeback story with a difference.

This eye-popping film seamlessly combines twenty years of stunning action footage with new specially-shot verité footage and interviews as it follows U.S. champion snowboarder Kevin Pearce and exposes the irresistible but potentially fatal appeal of extreme sports. 

An escalating rivalry between Kevin and his nemesis Shaun White in the run-up to the 2010 Olympics leaves Shaun on top of the Olympic podium and Kevin in a coma following a training accident in Park City, Utah.  Kevin's tight-knit Vermont family flies to his side and helps him rebuild his life as a brain injury survivor.  But when he insists he wants to return to the sport he still loves, his family intervenes with his eloquent brother David speaking for all of them when he says, “I just don’t want you to die.” Kevin’s doctors caution him that even a small blow to the head could be enough to kill him. Will Kevin defy them and insist on pursuing his passion?  With his now impaired skills, what other options does he have?  How much risk is too much? 

It is an amazing film which portrays brain injury in a very real way.  It is filled with amazing stunts and highlights the sacrifices behind them.

It really got me thinking... do I think about the risks enough?  Am I so intent on not letting epilepsy stop me from doing anything that I can't accept that there are things that I just can't do.  Like my job, I felt like I'd failed because I couldn't do the job I wanted, but am I too focused on succeeding in everything that I can't accept when there are things I just can't do.  Like running the marathon... it's something I could have done, before my epilepsy started... but my epilepsy may mean I just can't do it and I shouldn't see it as I have failed.  But at the same time maybe I need to think about my family, how hard am I going to push myself? I can't do it in a year, I'm not like I was before and I need to accept that.

I guess what I'm saying is maybe I shouldn't get so obsessed about not letting epilepsy stop me doing anything and then feel I've failed if something doesn't work out.  I think part of me doesn't want to look at the risks, just keep going without thinking about the possible consequences, but maybe there are things which I have to say no too, I think I need to learn to accept that.

It is definitely a film everyone should watch, it will really make you think...

http://thecrashreel.com/home.php

Please everyone read this :)

So I went to the Epilepsy Action ‘Weekend For All’ last year and I know I said at the time how amazing it was. Well the 2014 dates have been revealed:

31st October 2014 - 2nd November 2014

It’s going to be in Southend this year (apparently at a pretty nice hotel!).

Marie is looking for speakers at the moment, so I’m calling all health professionals with an interest in Epilepsy, could you give a few hours of your time to share your knowledge with people affected by epilepsy?  It would make a huge difference to so many.

It also needs at least 120 people to attend to make it possible so if you would like to come along please also contact Marie.  For a very reasonable price (I think £50, possibly a bit more) you get accommodation for 2 nights, food, the chance to speak to specialists and socialise with other with epilepsy.  It really is so so cheap for such an incredible event.

So what are you waiting for? Email Marie now and I'll see you there!  medgar@epilepsy.org.uk

Changes to your right to have BRANDED epilepsy medicines

Some worrying new guidelines have been recently given by Medicines and Healthcare Products Regulatory Agency which are not in line with the NICE guidelines which state:

“Consistent supply to the child, young person or adult with epilepsy of a particular manufacturer’s AED [epilepsy medicine] preparation is recommended, unless the prescriber, in consultation with the child, young person, adult and their family and/or carers as appropriate, considers that this is not a concern.”

The Medicines and Healthcare Products Regulatory Agency have put AEDs into 3 categories as to the importance of having the same brand each time…

Category 1 – Phenytoin, carbamazepine, phenobarbital, primidone 

For these drugs, doctors are advised to ensure that their patient is maintained on a specific manufacturer’s product.

Category 2 – Valproate, lamotrigine, perampanel, retigabine, rufinamide, clobazam, clonazepam, oxcarbazepine, eslicarbazepine, zonisamide, topiramate 

For these drugs the need for continued supply of a particular manufacturer’s product should be based on clinical judgement and consultation with patient and/or carer taking into account factors such as seizure frequency and treatment history.

Category 3 – Levetiracetam, lacosamide, tiagabine, gabapentin, pregabalin, ethosuximide, vigabatrin 

For these drugs it is usually unnecessary to ensure that patients are maintained on a specific manufacturer’s product unless there are specific concerns such as patient anxiety, and risk of confusion or dosing errors.

If your take an epilepsy medicine that is in category 2 or 3 of the MHRA guidelines, your doctor might not want to prescribe you the same brand. However, you could ask your doctor if you could stay on the same version if:

• The thought of changing makes you feel anxious or confused, or
• You think you have had side-effects eizures because you have been prescribed a different version of your epilepsy medicine

You can ask your doctor to write ‘no parallel imports’ on your prescription, but the pharmacist doesn’t have to take any notice of this.

The most reliable way to get the same version is to ask your doctor to write the brand name on your prescriptions. If the brand is written on your prescription, the pharmacist must give you that specific brand, by law.

Buggi Lights

It was just the other day when I was crossing the road after getting the bus home, it was pitch black and there was me with Riley in her black buggy waiting to cross the road.  Suddenly I felt very vulnerable, I realised no-one could see us. Even if I didn't have epilepsy that would have made me think twice, but then I thought what if I had a seizure right now... no-one would see the buggy...

Then a couple of days later I saw a couple of these buggi lights on the table at work.  They seemed perfect.  I had thought about getting some bike lights for the buggy but they are such a hassle to attach.  These you just stretch the strap round part of the buggy and they are on, if you have 2 buggies you can swap them over in seconds, they can fit any sized buggy.

The lights are really bright and they have 3 settings.  They also look fantastic, really child friendly and so many colours to match any buggy.

Basically I love them, I think anyone who has a buggy should have lights on them whether or not they have epilepsy but it gives me added peace of mind that if I were to have a seizure people would see the buggy.

And if that wasn't enough they give 25p from each sale to The Children's Trust who provide rehabilitation, education and care to children across the UK who have suffered a brain injury.

You can get your set at:

www.buggilights.com

Brain Injury books launched this week!

They're available now!  The books which my work have been working so hard on are now available to buy on The Children's Trust website.  They are free with just a £3.50 postage and packing (£1.50 for each additional book). 

www.thechildrenstrust.org.uk/books

Once upon a time there was a little robot called Tim-Tron...

I thought I'd write a bit about a new book which will be available from The Children's Trust (where I work) from next week... it is called Heads Up Tim-Tron and is about a little robot who bangs his head.  The aim is to help explain brain injury to younger children in a colourful and interesting way.

The story was written by my manager Ian and has beautiful illustrations :) there is also an audio read along track by Richard Hammond.  It will be available for just the cost of postage and packing so hopefully it will reach as many families as possible.

You can read more about how Tim-Tron was created in a blog written by Scope:

http://blog.scope.org.uk/2014/01/03/creating-tim-tron-the-robot-with-a-brain-injury/

It is one of 3 publications that The Children's Trust are releasing next week, the second one is a Medi-Kidz comic book which aims to explain acquired brain injury to older children.

There is an epilepsy Medi-Kidz comic already which is available for free from Epilepsy Action (click on the comic to order a copy)...

The final book is a parents handbook which will be packed full of all the most key information about childhood brain injury.

All the books will be available on Monday and I'll post the link to the site when it's up and running :)

Epilepsy Awareness Training with a twist!

Today I went to Maidstone to do the Epilepsy Awareness training.  It was a very different situation to any of the other presentations I have done. It was a bit of a mission getting there!  A good test for my bus and train skills!  I had to get the bus to drop Riley at nursery (she screamed when I left her - think the break for Christmas got her out of the routine - but she did have a good day in the end!).  Then luckily a family friend dropped me at Redhill station, then got the train from Redhill to Tonbridge, Tonbridge to Maidstone, then a bus to the school (and the bus before broke down so the bus was packed!)... but it's good proof you can be independent without a driving licence, just a bit more of a challenge!

The training was at a special school for children and young people with additional behavioural and learning needs.  I did a couple of sessions talking to some of the kids at the school, it was a very different audience to what I'm used to giving presentations to... I know the second one I did was much better than the first which I was a bit frustrated with myself over, I think it just took me a little while to put the information into a 10 minute easy to understand talk.  The kids asked some really great questions which was a good sign and one girl talked really openly to me about her brother who has epilepsy, so if nothing else I know I helped her.

I then did the usual awareness training with 70 members of staff... that is by far the biggest group I have ever spoken too!!!  I think it went quite well, I was a little nervous but not as much as I thought I would be.

I think it all went ok and the main thing is I hope today I have been able to raise a bit more awareness of epilepsy :)

Bone Health in Epilepsy

Ok, Vitamin D has been an issue for me since I was first refered to London.  I found out I had a vitamin D deficency and started on a supplement which I just didn't get on with and didn't help anyway.  But then no-one knew what to do, my GPs would always say go out in the sun more... I would say I do but it's my epilepsy meds which cause it... they would just say oh and do very little.

So now I just take an over the counter vitamin D supplement and hope it's enough, so hearing from a consultant about it was brilliant.  So in a nutshell...

The main issue in bone health is Genetics, so something you really can't change.  But it is some of the other factors are what can be effected by some epilepsy medication... those factors are:

• increases the rate vitamin D is metabolised by your body
• reduces calcium uptake from the gut
• can effect hormones
• interfer with vitamin K metabolism
• direct effects on bone cell function
• increased risk of falls from seizures

But the most important thing is that the issue of epilepsy medication doesn't really increase your risk of oseteoprosis until later in life.

So basically what you can do is

• eat a healthy balanced diet
• don't drink too much or smoke
• exercise
• reduce your risk of falls e.g. lighting, regular eye checks
• take at least 400IU a day (blood levels should be above 50 in people with epilepsy)

So it answered quite a few of my questions and turns out I'm pretty much doing all I can.  Another interesting thing is that people with epilepsy do tend to be more aware of bone health and so do look after themselves better than much of the general population.

Epilepsy and Memory

Memory problems are common in people with epilepsy... the first question is why?

• caused by the epilepsy
• side effect of seizures
• side effect of drugs
• mood and anxiety

As I said in my earlier post about the weekend... my memory seems to be ok and my memory book at work picks up any of my weaknesses.  It is only remembering names that I struggle with but even that I get anxious over.  Today while working I'd stopped using my memory book, I thought maybe I could work without it.  But then everything got muddled up in my mind, I felt myself start to panic so I opened the book and wrote everything down and suddenly calmed down as I knew I wasn't going to forget the important things I needed to do.

But my memory problems are nothing compared to the amazing person I met at the epilepsy weekend for all.  Her name is Kate and it was great to meet someone who I just got along with so easily and understood the challenges which epilepsy can cause.  We had so much fun at the weekend, our rendition of Grease Summer Loving I think topped the whole weekend for everyone hehe!

But the most incredible thing about her was how bubbley and positive she was even though she had real memory challenges.  She wrote the following to help a parent on the forum that I work on but I wanted to share it on here as I think she is an amazing person and we could all learn a lot from her about living for today :)

My head injury happened in 1999 so I've had almost 15 years to develop them. God, it feels so strange seeing it written there - almost 15 years since the accident. They've flown by but at the same time I've changed so much in them. Acceptance has been a part of that. Accepting that it had happened, that it wasn't going to go away and drinking alcohol certainly wasn't going to make it go away. It would only make it worse. But it took 10 years and getting epilepsy because of it to finally make me realise that.

So in terms of the strategies using the grid method has been the most recent and useful addition. I have a diary which I keep on me at all times (attached to my bag with a lanyard because I'm always panicking that I've lost something!) I'm probably one of the most organised people when it comes to the contents of my bag but I panic something could have fallen out in the time since I last checked.

-I keep a ruled piece of paper in the middle of the week which I divide into 4 squares: Urgent, Important, Not Urgent, Not Importan and slot each thing I need to do into one of thoset. Like I'm sure i said, the things I need to do, or people have told me to do, get in such a tangle in my mind or get lost completely. It's also very difficult to prioritise what should come first. Using the grid really helps and I feel such a sense of accomplishment when everything from the lists has been crossed out - done!

Medication reminders. I learnt the hard way that keeping the drug levels in your blood stream consistent IS important. By that I mean it's important to take your medication at regular intervals. I take mine 3 times a day. Even when I want a lie in my reminder alarm's set for 7am. I wake (just about!) up, take the morning dose and go back to sleep.

I don't remember events after a certain point. I can't put an exact time on that but it's usually a couple of weeks. Photos help. Not that they'll necessarily bring back the memory of me actually being there but it's nice to have a record once the memory's gone. 

And also getting involved, going to events like this one. Accepting that you have the condition and not being ashamed of it. It's through that that I've met people like you. It's great to meet people who you've immediately got that epilepsy experience in common with. It's so important to hold your head up high as opposed to wallowing in pity you might feel. You can also share tips and really reassuring advice like I've had from you.

Epilepsy ~ Depression and Anxiety

I thought I would start my sum up of the more information based side of the Epilepsy Action weekend by looking at Depression and Anxiety in Epilepsy.

Up to 40% of people with epilepsy will suffer from either depression or anxiety (or both) which is much higher than in the rest of the population...

So what could the causes be?

• Biological e.g. type of epilepsy, temperal or focal
• Personality
• Social issues e.g. impact on driving, work and family support
• Percieved stigma

I guess if I think about myself I don't think I suffer from depression but I think maybe I do suffer from anxiety to some extent.  I worry a lot and sometimes I can feel myself becoming paniced... but I have found if I just breath and then write a list of all the things I need to do it calms me down. 

I don't tend to panic about having a seizure but sometimes I worry about it, I think there is a slight difference between the two, worry I think you can live with and still function with, panic I think just takes over...

Epilepsy Weekend ~ Mixed Feelings

Well it's the Epilepsy Action weekend for all in 2 days time.  I'm really looking forward to it but at the same time I'm a little bit nervous...

I've written something for the 15minute presentation I'm giving on my experiences and that's the bit I think I'm most nervous about, but hopefully it will go well.  I think I'm also a bit nervous about spending the weekend away from Riley, it will be the first night I have spent away from her and that comes with mixed feelings, it will be nice to have a whole 2 days doing something for me but at the same time I know I will miss her...

But the most exciting bit is that hopefully I'll meet lots of women thinking of being mum's, women who are pregnant and new mum's and will be able to start up some sort of network for mum's to support each other.  That's the plan but even just meeting a few women will be fantastic and I think I'm going to learn a lot from the midwife, consultant and epilepsy nurse, so that is exciting too.

I'm also going to be representing Youth Health Talk (which I have spoken about in one of my recent posts) but also the Brain Injury Hub which is the information resource which I am involved in at work.  I have never really talked much about the specifics of my job but I work for a charity called The Children's Trust which is supports children with brain injury and their families.  One of the services they provide is the Brain Injury Hub, an online parents resource, and I am the online community coordinator for that.

www.braininjuryhub.co.uk

There are workshops for young people with epilepsy and a creche at the weekend and so there maybe parents whose child has had a brain injury and suffers from epilepsy because of it. If premoting the hub there only helps one parent it is worth taking the information and talking to people about it.

This will be my last post before the weekend so I will let you know how it goes next week.  Hopefully I might meet a few of you who have been reading my blog.  The one thing I can't believe is how many people want to read my story and hear what I have to say on Twitter and I just want to say thank you so much for all your support and helping to spread information and support to as many women as possible.